tag:blogger.com,1999:blog-65463499392582995642024-03-05T11:55:53.884-06:00Hope for Holden's HeartLindseyhttp://www.blogger.com/profile/14667677024767489726noreply@blogger.comBlogger141125tag:blogger.com,1999:blog-6546349939258299564.post-69132534254650421842013-06-24T04:49:00.001-05:002013-06-24T04:49:14.437-05:00Four Blessings<br />
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Why am I drawn here on nights like tonight? Ugh. I feel like
such a raw mess sometimes. This blog that I once so faithfully updated has lost
its main character, and I still don't know what to do about that.</div>
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It’s been quite some time since my last post. Maybe that’s a
good thing. Maybe it means that I’m coping a little better these days. Or maybe
it just means that it’s hard to keep finding words to describe the insane highs
and lows of our crazy life. This post will have to include the both the highs and the
lows- it seems only fitting.</div>
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Oh, Carter. What can I say to even begin to describe our
little ray of sunshine? He’s not quite as sunshine-y as he used to be, but he’s
still the happiest baby on the planet. His Charlie Brown head is massive, and it stays decorated with bruises most days. (It must be hard to hold it up. :) ) He’s a butterball, but he’s gotten
longer and leaner since he (FINALLY) started walking. He waited almost
seventeen months to take the plunge, but he’s finally walking on his own.
Nothing is safe in our house these days, and even with two boxes overflowing
with toys, he manages to find entertainment elsewhere in the house. Things like
shoes (a favorite), the dishwasher (that he prefers to use as a recliner) and
paper (that he inexplicably loves to eat). </div>
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He LOVES Mickey Mouse Clubhouse with a passion that’s almost
comical. He has a little Mickey chair that he got for Christmas, and he’ll hand
us the remote and go sit in his chair when he decides it’s Mickey time. <span style="mso-spacerun: yes;"> </span>He also loves the Nutri-System commercial with
Terry Bradshaw. He’ll drop anything he’s doing to go grin at Terry when he’s on
the TV, saying, “ba-ba” (Bradshaw?) the whole time. If he ever gets the chance
to meet him in person, I think it would be the highlight of his life. </div>
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We still have some issues with his eating habits, since he’s
super picky about everything. The foods he still loves are string cheese,
oatmeal, macaroni and cheese, goldfish, spaghetti and pizza. The foods he still hates are…
Well, pretty much everything else. We’re working on it, but it looks like he’s
destined to be a picky eater like his Daddy. That’s hard for a Mama who loves
to feed people. </div>
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One of his favorite activities is opening and closing doors.
Cabinets, drawers, doors- he loves them all. And I really think he has bat ears.
That kid can hear a door open across the house, and he’ll make a beeline for
it, trying to get there before the door shuts. </div>
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He loves the animal sound song, still, and loves most
animals. However, if <st1:city w:st="on"><st1:place w:st="on">Trent</st1:place></st1:city>
moos at him like a cow, he’ll pucker up and cry like somebody burned him. He
has no issues with pictures of cows, or cows on his beloved Mickey cartoons,
but don’t moo around him! The kid is definitely quirky, but he didn’t stand a
chance, with parents like us. </div>
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Speaking of quirky, he can’t stand the feeling of grass in
his toes. (I think he gets that special quirk from me.) Even crawling, he keeps
his feet raised in the air behind him. It’s about the cutest thing ever. <span class="Apple-style-span" style="font-family: Wingdings;">:)</span></div>
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The girls continue to grow like beautiful little weeds.
Kaitlyn is as tall as me now, and Rylie is pretty close, too. Kaitlyn has the
sweetest heart, and she constantly amazes me. She’s one of those kids who has
it all- she excels at sports, she’s super smart, she loves to read, she is
beautiful, and she is an amazing artist. Her dream is to become a pediatric
cardiothoracic surgeon, so she can help other babies like Holden. She makes a
Mama proud, proud, proud.</div>
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Rylie bug is stuck at that age where she’s not quite a
teenager, but she’s not a little girl, either. She gets a new freckle every
day, it seems, and even though she hates them, I love each and every one of
those freckles. She is still smiley Rylie, even with the attitude that comes
along with this age. She loves animals with all of her heart, and she’s going
to be an amazing veterinarian someday. She looks so much like me, it’s scary, and
she’s going to be a full-fledged teenager before I know it. It’s a terrifying
thought, but I can’t wait to see what kind of woman she’s going to become. </div>
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I don’t know how we got so lucky, but we hit the jackpot
with our kids. We have been blessed beyond belief with all of them. </div>
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Our other sweet blessing is the reason I’m up in the middle
of the night, pouring out my rambling heart. I woke up in a cold sweat, with
tears running down my face, after another one of <i style="mso-bidi-font-style: normal;">those</i> dreams. I pray every night for one of the good dreams. I
would love the chance to relive the moments we spent here at home, rocking and
snuggling, oblivious to what would soon break us in a million little pieces.
Instead, I get the dreams of his last few days. The ones I would give anything
to never relive again. I can’t even describe the horror of holding a child
while he runs into our Father’s arms. I can’t even try. I so want to forget,
but I have solid weeks where the dreams haunt me nightly. </div>
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Sometimes it feels like the hole in my heart will never grow
smaller. </div>
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Sometimes it seems like any healing I’ve discovered in the
last two years can disappear in a heartbeat. </div>
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I’m always on the edge of panic, thinking the worst. I just
know that something horrible is going to happen- something else beyond my
control. Again. A text message from the girls’ father? Something awful must
have happened. Carter’s running a fever? I keep myself awake thinking about the
many things that could be wrong with him. We need to run labs, check all of his numbers.
We need to fix it before it’s too late. Of course, it’s usually teething or an
ear infection. And my ex-husband is usually just asking a simple question. I
know I’m being ridiculous. But I can’t stop the crazy sometimes. </div>
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It’s so hard to remember that all good things aren’t temporary.
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Everything was always beyond our control. We were so
helpless, even as we tried our best to help. Most of the time, we were running
on faith alone. You have to have faith in something when everything else is
gone. Along the way, you lose faith in everything else. In the medical system.
In the doctors, who aren’t gods. Even in ourselves as parents. </div>
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I can hold Carter when he falls down and bumps his head, and
I can tell him that everything’s going to be okay. I can promise that the pain
will go away, and his happy little life will continue as always. I never had
that chance with Holden.</div>
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<i style="mso-bidi-font-style: normal;">“You are loved”</i>.
That was the only promise I was ever able to make to him. Not, “You are safe.”
Not, “It will be okay.” Not, “Mommy will make it all better.” </div>
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<i style="mso-bidi-font-style: normal;">“You are loved.” <o:p></o:p></i></div>
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It’s not a bad promise, really, but it’s a lonely one. I
wish with all that I am that I was able to make and keep more promises to him.</div>
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I try to continue to give him purpose. To make things better
for other kids like him, even though we can’t help our Holden anymore. I know
that he’s alive in all that I do. That helps, a tiny bit, to keep him close to
me, even when he’s so very far away.</div>
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July is almost here, and while I’ve always loved the time of
barbeques, snow cones, fireworks and sunshine, those things are now shadowed
by a brave little heart we lost too soon. While most people are looking forward
to the 4<sup>th</sup> of July holiday, I’m remembering the nightmare. July is
anything but a happy month for us.</div>
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I lived close to the edge for so long, and almost two years
ago, I fell over it. I lived to tell the tale, but just barely.</div>
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As Christians, we’re supposed to celebrate when one of our
own makes it to heaven. I’m finding it really hard- impossible, really- to
celebrate Holden’s Heaven Day each year. I don’t want to celebrate. As selfish
as it may be, I want him here. </div>
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I’m dreading this coming month, and I’m praying for mercy. I’m
praying for my sweet little man to stay close to my heart these next few weeks.
July is brutal.</div>
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Many days around this time of the year, I wake up and forget
to be thankful through the pain. For another day on the planet. For three
remaining children who are happy, healthy and safe. For friends and family who
have been with us in our darkest hours, and continue to walk beside us in this
journey. For a husband who remembers that “Daddy” is his most important title
in life. I can’t promise to be better today- it’s already a rough one, and I’m pretty busy feeling sorry for myself. But tomorrow, now that’s a new day.
Tomorrow, I’ll wake up and remember to be thankful. For everything.</div>
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Until then, I would really appreciate your prayers.</div>
Lindseyhttp://www.blogger.com/profile/14667677024767489726noreply@blogger.com3tag:blogger.com,1999:blog-6546349939258299564.post-65121074523357505492013-02-02T08:09:00.000-06:002013-02-02T08:09:05.645-06:00Happy 3rd Birthday, HoldenOh, my sweet Holden- Today is a hard one. I can't hold you. I can't see you. I can't kiss those sweet cheeks I loved so much. But I hope you can feel my love for you- today and every day.<br />
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I’ve been dreading this day for weeks, just like last year. I can make myself physically sick with dread and anxiety, and it never seems to get easier. February 2nd is one of the most joyful and heartbreaking days of the year. I don’t know how it can be both.<br />
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I never could have imagined what our future held when you were born three years ago. I didn’t know that your heart was so sick when I held you for the first time. All I knew was that you were perfect. When I held you for the last time, seventeen months later, I <em>still</em> thought you were perfect.<br />
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I can’t imagine my life without you in it- even if you exist only in my memories. I can't imagine my life now without those seventeen precious months.<br />
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It's such a horrible, sickening symmetry. You were mine for that long, and now it’s been almost the same amount of time since I’ve held you in my arms. Seventeen months since we returned you to our Father's arms.<br />
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Seventeen months without you, but seventeen months closer to you, too.<br />
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Thank God for the knowledge that I’ll share your birthday with you again. Someday. May the angels hold you close until you're back in my arms where you belong.<br />
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Thank you for the extraordinary pleasure of being your Mama. Thank you for being our miracle. Thank you for the legacy you left behind. Thank you for being <em>mine</em>.<br />
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Happy birthday, my sweet little man. You have <em>always</em> been loved beyond reason. Then, now and forever.Lindseyhttp://www.blogger.com/profile/14667677024767489726noreply@blogger.com2tag:blogger.com,1999:blog-6546349939258299564.post-3205519823595668942013-01-28T08:52:00.000-06:002013-01-28T08:52:34.920-06:00Carter<br />
Holden's days were documented in such detail (a fact that I'm sure would have embarrassed him greatly had he made it into his teenage years), but Carter has never had the same honor. He may not face the same journey as his brother, but it's a journey all the same. I'd hate for him to think that we didn't record anything about his first year on the planet, so here's a post all about Carter. :)<br />
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We'll start with the vitals: He is a little over twenty pounds and almost thirty inches long. His head is HUGE- above the 95th percentile. (This has earned him the nickname of Charlie Brown. :)) He has eight teeth, all in the front, and his canines and molars are on their way. <br />
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Our sweet little boy has found his voice! After months of being the quietest, sweetest baby ever, he has recently developed a mind of his own. He's still pretty sweet, but he knows what he wants now, for sure. In fact, one of his favorite words is DAT! As in, "I want DAT! Dat! Dat!" All day long, every day, he wants DAT. It would be maddening if it weren't so stinking cute. His other words include mama, dada, hot, dog and bah (bye?). <br />
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Most moms are biased, but I really think my baby is a genius. :) He will point to just about anything you ask him. He knows where my nose, ears and mouth are located, and he has already figured out the "Work smart, not hard" philosophy. Of course, that intelligence makes him a little harder to parent, since he seems to be a step ahead of us most of the time, but I hope he keeps that curiosity and quest for knowledge throughout his life.<br />
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He's taken a few faltering steps on his own, but he's still mostly content to army crawl his way through the house. He pulls up on anything that stands still, but he's scared to let go to walk. In fact, the only way he'll walk is while holding on to two adult fingers. Not one, but two. He's quite adamant about needing them both, and will plop right down on his little butt if one finger is taken away. One of these days, maybe he'll realize that he doesn't need the safety net. :) <br />
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Of course, he may not see the need to walk just yet. His army crawl is quite efficient- and pretty darn cute, too. He is crazy fast, especially if he hears a door open. One of his favorite activities is opening and closing doors.<br />
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Crawling has also given him new opportunities to stuff his face with anything he can find on the floor. He's a little Hoover! He can spot the tiniest speck of something on the floor, and it's in his mouth before I know what's happening. I've lost count of the number of times I've said, "That had <em>better</em> be a puff!"<br />
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Another favorite thing to do is play with balls. Any shape, size and color- He loves them all! He already has quite the pitch, and I'm hoping he continues to develop that into a professional baseball career. Mama can dream, right??<br />
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He's obsessed with feet- his own and everyone else's, too. (God must really have a sense of humor, because I can't stand the nasty things!) We can't keep shoes or socks on him, even when it's freezing cold outside. Somebody should invent some kind of sock that can't be pulled off by a baby's determined little fingers- that person would make a fortune!<br />
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Carter is really into Mickey Mouse Clubhouse these days. He'll crawl across the house as fast as he can move those little arms when he hears the Hot Dog Dance start playing. His other favorites include anything musical and (inexplicably) the Empire commercial- apparently, that jingle is irresistible to babies. (You just sang it in your head, too, didn't you?)<br />
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Like most babies, he loves to empty things, but isn't so much interested in putting them back where they belong. It's not unusual to find a case of soft drinks rolling around on the floor, or to find an entire stack of paper plates strewn across the kitchen. I could probably avoid the messes, but I like to pick my battles. If it's not a danger to him, I usually let him explore. <br />
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Keeping him occupied while cooped up inside has proven to be a challenge. Thankfully, living in Texas means that we occasionally get a break from freezing temperatures in January, and we take full advantage of the perfect 72 degree days. He would still live outside, if we'd let him.<br />
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Mealtimes have also become more challenging. Carter would eat anything I spooned into his mouth for his entire first year. Some switch flipped on his first birthday, and now his palate is a bit more discriminating. He continues to love oatmeal, puffs, cheese and yogurt, while new foods are met with a closed mouth. He takes after his Mama in the texture area, and won't pick up anything that has a weird texture. (This aversion does not, however, apply to things found on the floor. I don't understand how that works.) That means most finger foods are out, but we're still working on it. I might still be feeding him when he's ten, but that's okay. He's worth it. :)<br />
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All in all, Carter's first year has passed by in a joyful blur. He's mellow, happy and full of personality. If all babies were as easygoing as him, I'd have a million of them. (Or not- they're expensive little creatures!) <br />
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I'm soaking in all of the slobbery sugars I can, because I know that these days will be nothing but a memory before I know it. <br />
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I am so thankful for that hard-earned knowledge- I know that none of these days are guaranteed. I know now to treasure each and every day while we're still living in it. <br />
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We are so thankful for our Carter. Our stinkbug. Our rainbow after the storm. <br />
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God is good, all the time. :)<br />
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<br />Lindseyhttp://www.blogger.com/profile/14667677024767489726noreply@blogger.com2tag:blogger.com,1999:blog-6546349939258299564.post-65271544865695857412013-01-03T21:42:00.001-06:002013-01-03T21:42:37.617-06:00Empty StockingsHere I am, once again, ready to pour my heart out on the pages of a blog. I'm drawn here again tonight when my heart feels too fragile to do anything else. This blog is one of those tiny connections to my Holden that I can't seem to let go.<br />
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It's been a hard few weeks. Honestly, it's been a hard few years. <br />
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Some days, it's all I can do to keep the smile plastered on my face.<br />
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We bought Carter's first shoes this week, and I had no idea how much that would break my heart. It should be one of the happiest rites of passage in a child's first year, and I just want to cry because Holden never had a pair of shoes. He went into the hospital before he ever needed them, and we never thought to buy any. Just one of my many regrets, I suppose. <br />
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Holden celebrated his first birthday on the 8th floor of CMC- Carter will be celebrating his this weekend at home. Carter is already in size 4 diapers, and Holden never made it past size 3. Carter weighs more now than Holden ever did. The comparisons are endless and so unfair. These may all seem like such small, trivial things, but part of my heart is a little bit shattered knowing that Carter is already bigger than Holden ever had the chance to grow.<br />
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I'm so very thankful, yet still reeling at the unfairness of it all.<br />
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It seems harder to hold it together this time of year, because I'm constantly torn. Carter celebrated his first Christmas, and the girls were spoiled rotten by an enormous family who all love them dearly. I am overjoyed by how much love my children have surrounding them. We are all healthy and whole and loved, and I should be thankful for every one of those blessings- yet my heart aches for the blessing taken from us too soon.<br />
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This was the second Christmas celebrated without Holden. The second one was worse than the first, I think. The first was so painful, but still so new. I kept thinking I would be okay if I could just get through it all. This year has been so much harder, because it's sinking in that this is a yearly thing. This is forever. <br />
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I've been struggling this holiday season, even as my blessings seem to multiply each day. I'm crying more often. I'm not sleeping well. I'm having bad dreams- <em>those </em>dreams- almost nightly, and I wake up aching so much for a little boy who exists only in my dreams and memories now. I will always and forever want more.<br />
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Most of Holden's first and only Christmas keepsakes are packed away in his box, but I faithfully hang his stocking each year. Each year it remains empty. It's such a tangible reminder of the tremendous loss that we live with each and every day. His Christmas things should be in his stocking. Not in a box. <br />
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This isn't right. This isn't natural. This isn't the way things are supposed to be. <br />
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My heart goes out to every parent who has had to put their child's life in a box. <br />
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Lindseyhttp://www.blogger.com/profile/14667677024767489726noreply@blogger.com1tag:blogger.com,1999:blog-6546349939258299564.post-13334475780980534722012-11-01T14:31:00.000-05:002012-12-01T15:22:41.018-06:00Unfortunate AnniversariesI always second guess myself when I open up this blog to write. I seem to only feel called to write when I’m having one of those days, when my heart feels pulled to my little heart angel in Heaven. I feel guilty for not writing about the good days, about the girls or Carter. But on days like today, the need to share my grief is so strong.<br />
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Halloween and the day that follows will always be bittersweet days for our family. October 31st was the last “normal” night for our Holden. The last night his little body looked perfect from the outside. The last night his bedtime routine included a bath and snuggles instead of multiple meds and monitors. The last night he nursed to sleep instead of being hooked up to a feeding pump. I didn’t even dress him in a costume, naively believing that he would have many more years to dress up. He never saw his second Halloween.<br />
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Two years ago today, we took our brave boy in for the surgery that would alter our lives forever. I didn’t know that Halloween night would be the last of so many things, but I don’t know that we would have done anything differently. He was so loved, and I think he knew it. I so hope he knew.<br />
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I hate these morbid anniversaries that I can’t seem to forget. I hate measuring my months and years by the days they contain that break my heart. I miss him every single day- that never changes. Some days, like today, are harder than others. I can’t always predict them. Sometimes, the pain surprises me and leaves me breathless. My eyes fill constantly with tears, even as I try to keep smiling through them for the sake of everyone else. I sit and stare at his pictures, trying to imagine what our lives would be like if he were still a part of them. I stare, fixated, remembering how soft his skin was. How shiny and beautiful every scar on his body looked. How he could scrunch his little face up into the "bull face", and wrap everyone he met around his little finger. How his eyes seemed much older than his seventeen months, as if he knew so much more than we ever would. How he greeted each day with a smile, even the days he knew would bring nothing but pain. <br />
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I wanted nothing more than for God to make that pain go away- to make him all better. To heal his sick little heart. I couldn’t know, then, that healing Holden’s heart would mean breaking ours. <br />
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I miss you, little man. Beyond words. Beyond explanation. Beyond measure. Lindseyhttp://www.blogger.com/profile/14667677024767489726noreply@blogger.com1tag:blogger.com,1999:blog-6546349939258299564.post-1402950852774884732012-09-07T09:56:00.002-05:002012-09-07T09:56:58.583-05:00ChallengesWe’re still here, soaking up the heat and praying for cooler weather. We had an amazing summer with all of the kids, and we somehow made it through the July anniversary I had been dreading for most of the year. Thank God for my two amazing little (not-so-little) girls, and our near-perfect 8 month old baby. My three precious blessings can sure make me smile, even when I‘m feeling less than happy. <br />
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It’s amazing how different things are now, raising Carter. We haven’t seen a doctor in two months, and that alone is surreal after our experience with Holden. I could have told you how much Holden weighed- down to the ounce- on any given day. I could have told you all of his numbers- weight, BUN, lipase, lytes… With Carter, we just assume all is well, and it’s a wonderful feeling. <br />
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I always thought Kaitlyn was an easy, happy baby, but Carter‘s shown us what easygoing really looks like. He’s an incredibly happy baby, and he’s always smiling. I can probably count on my fingers how many times he’s actually cried. He’s a ray of sunshine, for sure.<br />
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We can instantly reverse any bad mood by singing, and almost any song will do. He’s starting to become a little more mobile, but he’s not crawling yet. I think his sweet disposition has a lot to do with him not moving around- he’s pretty much content wherever he is, even when he’s stationary. <br />
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I’m not sure if poor Carter is ever going to have enough hair to cut. By the time Holden was this age, he had already had his first haircut. For now, Carter has a Mohawk thing going on, and it’s pretty much adorable. <br />
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He babbles, claps his hands, gives sugars (kisses), runs around in his entertainment center, and eats Cheerios like it’s his job. Aside from the Blue Bell ice cream his Daddy shares daily, they’re probably his favorite food. He still loves to nurse, but sleeping has become an unwelcome chore for him. (I guess if that’s my biggest complaint, we’re pretty lucky.)<br />
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He has the most precious laugh- more of a chuckle, really. It melts my heart every time. We have been enormously blessed with this sweet little boy, and I thank God for him and his sisters each and every day. <br />
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I had never heard of a “rainbow baby“ until I was pregnant with Carter. The rainbow after the storm. A baby sent to help ease the hurt of a lost child. Carter is the first brick in the rebuilding of a family that has suffered a tremendous, unexplainable loss. He is not a replacement. The hole left by a missing sibling can't be filled, but these rainbow babies are a solid first step in a never-ending healing process.<br />
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It's easy to be joyful when the sun is shining on my perfectly healthy, happy, smiling baby boy. But sometimes it’s a conscious choice to be joyful- to choose joy- when the darkness threatens to take over. <br />
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"In Christ there are no goodbyes. In Christ there is no end." These words run through my mind quite frequently. I’ve lived by them for more than a year, and I’m clinging to them now. I silently mumble them to myself when one of those days comes along and my heart is exceptionally sensitive to grief.<br />
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Grief is a crazy thing. Just when I think I've got it all figured out, I realize that I‘ll never have it all figured out. The tears don’t spill over every day now. Sometimes I can go days without a single tear. It doesn't mean that I don't miss Holden. It doesn't mean that I don't hurt. It doesn't mean anything other than that I'm slowly learning how to function in a world that will never be right again.<br />
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Then there are the other days- days when everything catches up with me.<br />
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Days when I don't want to be strong. When I just feel defeated. When all I want is for the world to swallow me up and let me cry.<br />
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Cry because I miss my little boy. Cry because it hurts like hell. Cry because every song on the radio reminds me of him. Cry because his favorite movie (Finding Nemo) is coming out in 3D, and I think of how much he would have loved the experience. Cry because of the reality that our family will never be whole, at least not in this life. Cry because I have a million pictures of Kaitlyn and Rylie together, and I'll never have one of my boys smiling side by side. Cry because the details of that horrible day creep into my mind hundreds of times each day. Then cry some more because those details make me physically ill.<br />
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Fourteen months ago, life as we knew it came to a screeching halt. The world around us kept spinning, but we stood motionless, gasping for air and praying that we would wake up from the horrendous nightmare. I remember it all. Every detail. I can hardly remember what I wore yesterday, yet every single detail of that day in July is crystal clear. I remember the clothes we were wearing. The smells. The sounds. The fear that took over my body. The faces of everyone in the room, trying to save our little man's life. Making decisions that I never imagined myself having to make. Begging God to take anything else, to take me instead. I remember it all. I've been fighting those memories for more than a year. They sneak in and threaten to consume me when I let my guard down. They make my stomach churn, my heart ache and my whole body feel like its revolting against me. I have so many beautiful memories that I carry in my heart, but I can’t seem to shake these.<br />
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In the span of a year and a half, we went from being the parents of a heart warrior, to being the shocked, grieving parents of a heart angel, struggling to mend our own broken hearts. <br />
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The challenges we’ve been faced with in life make absolutely no sense to me. None. Why would a God who loves unconditionally bless us with a child, make us watch him fight for his life, and then take him away? I don’t understand it, but at the same time I trust. I trust God’s plan for my life, even when it breaks my heart.<br />
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Our hearts may be broken- Holden’s heart was broken, to be sure. But the hope that sustained it wasn’t lost. His hope, his heart, will never be lost. He had a rough and exhausting journey, but he sure was happy. When it comes down to it, isn’t that what matters most?<br />
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I pray that I am reminded every day of what matters most. I hope I remember to hug my babies a little tighter. To give thanks for my blessings. To take a step back and truly appreciate the gifts I’ve been given, even when life feels chaotic or overwhelming. <br />
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Each and every day is progress, even if that progress is slow. I'm still raw, and will probably always feel the same. I wake up every morning to a world that isn't right- a world where I can almost physically feel the hole in my heart. Even the happiest of days are colored black around the edges, because nothing will ever heal this particular hurt. <br />
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Being the mother of a heart angel puts me in a very confusing position. I am a heart mom without my heart child. I no longer live with the day to day stresses that once ruled my life. I don't plan my days around upcoming appointments or surgeries or therapies. I don't give medications every hour or obsessively stare at the blinking numbers on a monitor. These responsibilities were taken away from me with no warning when God decided that our little man had fulfilled his purpose here on Earth.<br />
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My heart journey changed the day that Holden earned his wings. We shifted from focusing wholly on Holden’s heart, to focusing on the impact he had on our own hearts. I am a different person. I am a better person. I am stronger. I love others more completely. I live for every moment of every day. I am a better wife to his Daddy, and a better Mama to his big sisters and his new (heart-healthy) baby brother. Holden opened my eyes to a world that I never knew existed, and he brought incredible people- doctors, nurses, other heart families- into my life. Pretty impressive accomplishments for a little boy who only lived 17 short months.<br />
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So, here I am. A heart mom who doesn't live like a traditional heart mom. I hold my new healthy baby in my arms and probably appear to be mostly happy. But appearances can be deceiving. Nobody can see the heaviness in my heart. I will always be a little broken. I will always miss my baby, and I’d do anything to have him in my arms again.<br />
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The question is, what do I do now? I can't stay in my bed and pout. I can't pretend like having Carter makes everything better. I can't forget about the heart community just because I feel like I'm somewhat of an outsider. A scary outsider, no less, to the heart families whose biggest fear is having to walk in my shoes. I remember it well, that fear. That irrational fantasy world where nothing bad would happen as long as I didn‘t acknowledge the outcomes that were less than perfect. My heart broke for those families, even as I tried to distance myself as much as possible from them- like it could be contagious. Now, we‘re those people. “There but for the grace of God go I.”<br />
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It's been 14 months since Holden earned his wings. An entire year of “firsts” without Holden. Sometimes it feels like just yesterday, and other times I feel like life is standing still. I find comfort knowing that God trusted us, and only us, to take care of him during his short stay, and I am overwhelmingly thankful for that time with him.<br />
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I'm doing my best to keep his memory strong and his story alive in people's hearts. I still believe that one day, his legacy will change the world for the better. His heart- his hope- still has a story, and it is very much alive in my heart.<br />
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<br />Lindseyhttp://www.blogger.com/profile/14667677024767489726noreply@blogger.com1tag:blogger.com,1999:blog-6546349939258299564.post-17277412420819513232012-05-24T09:09:00.001-05:002012-05-24T09:21:16.026-05:00PatienceLast May, we were right in the middle of our stolen months with Holden at home, in an unseasonably cool month that allowed our nature-loving boy to spend every waking hour in his stroller. This May, I’m still spending a lot of my time outdoors, but it’s a different baby in the stroller. It's a surreal life at times.<br />
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I keep waiting to wake up and return to normal, but normal is gone. <br />
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That sweet new baby in the stroller has done more for my spirit this year than I ever thought possible. I think the main thing I’m going to remember about Carter’s first few months is joy. He <em>radiates</em> joy. He brings so much happiness to hearts that have been filled with bitterness and regret. I call him my Stinkbug, but he has also been my saving grace. He’s healed our hearts in so many ways.<br />
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He is the happiest baby I have ever known. He is constantly smiling. When he sees my face in the morning, through diaper changes, at family, at strangers- he even smiles when we give him medicine. He smiles throughout the day, so much that it’s hard to be anything but joyful when I look at his face. <br />
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And it’s a fat, handsome little face. He joined the world as a big baby, and his growth hasn’t slowed down at all. He is over seventeen pounds, probably eighteen by now! He's wearing 9-12 month clothes already, and his head is so big that I can’t fit it through shirts that don’t include buttons. He is a monster baby, for sure, but that’s one of our blessings. As his godmother says: We prayed for healthy and strong, and God delivered!<br />
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Carter’s little body is healthy and perfect, and I thank God for that every day. Every single day.<br />
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He is already spoiled rotten, and I don’t know if I could stop myself if I tried. I don't even try. I just want to enjoy his babyhood as long as I can! I find myself wanting to memorize every little thing. The sweet smell of his baby scent and little boy sweat. The feel of his peach fuzz head on my cheek. His smile as he’s nursing and feeling playful. The way he snuggles up to his burp cloth and sings himself to sleep. I stare at him as he sleeps, letting him linger a little longer than necessary, snuggled into my body. I know that those memories will be forever etched in my mind, no matter what happens tomorrow. <br />
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He doesn’t know yet that the world can be a cruel and ugly place, and I pray he doesn’t find that truth for a very long time. <br />
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Seeing Holden's life cut so short has made me immeasurably grateful for the little moments, which I now know I am never guaranteed. But at the same time, I’m also incredibly wary. When you live every second with the knowledge that there’s no guarantee, it’s so hard to ever be truly happy in the moment. I’m trying to learn how to enjoy each moment in the moment, because there may not be another, but it's difficult.<br />
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Many people have asked about my virtual silence, and I’ve told them all the same thing: sometimes, it’s just too much. I don’t even know whose story I’m telling anymore. Is it Holden’s, or my own? It’s hard to write, it’s hard to find the words to adequately describe what I’m feeling, and it’s a struggle to describe our lives without sounding like I’m whining. <br />
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We have much to be thankful for, but I struggle daily. I struggle to be thankful, when I feel like so much has been stolen from us. I struggle to be faithful to a God who is always good when I am not. I struggle with acknowledging the little blessings that are made our own each day, while trying not to dwell on how much I don't have. I struggle with being happy in the moment. Some days, I just don’t feel like being happy.<br />
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I’ve been attempting to rejoin the world of the living, after spending much of the past year in a fog of depression. I’m trying to find my way out of that fog, but it’s sneaky. It comes back for me every time. <br />
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I’ve also been looking for a job for a while now, as part of my efforts to rejoin the world. Jobs are hard to come by in the best of circumstances, and I don’t think mine have been the best. It only adds to the fog to get turned down so many times. But I’ve been out of that world for almost three years now. I know potential employers look at my resume and wonder what I've been doing for the past three years. How do I even begin to describe what my job has been for so long? I'm sure I'm not alone in the depressing task of job searching, especially not in this job market. It’s just one more bump in the road, but I hope that it will be a small bump in the long run.<br />
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Our road is full of those small bumps. I think so much of what has gotten me through each day was simply survival- the need to get up each morning, because I didn’t have a choice. I’ve lived with daily, constant visions of what could have been- what should have been. I second guess every decision we made, and I think of everything I would have done differently had I known what the outcome would be. <br />
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We handed our brave little man over to others who were better equipped to take care of him, time after time. Surgeons, doctors, nurses. Ultimately, God. It’s funny that the safest arms for him have been the hardest for me to accept. <br />
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There’s a Holden shaped hole in our house, and I’m exhausted with trying to remember how this place felt when he was here with us. Did I appreciate each breath he took? Did I notice each time he laughed- truly notice? Did I remember to recognize each second with him as a miracle? Did I thank God enough for those seconds? I don’t know if I did any of those things, not enough. But I do them now.<br />
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Plastic containers below our bed sort clothes he’ll never wear again. The puppy sleeper he was wearing the night before his surgery. The button-up shirt that made him look like such a big boy for his one year pictures. The soft little jacket that covered him when he came home from the hospital last spring. The camo fleece outfit he wore on Christmas day. I can’t put Carter in them, but I can’t bear to get rid of them, either. <br />
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His big memory box sits in our closet, and I can only handle opening it occasionally. I read through the hundreds of cards, letters and notes from people who were touched by Holden’s journey. I’m amazed that a child who had no words spoke to the hearts of so many. <br />
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More than anything, that’s what I need to remember. He mattered. <br />
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I need his life validated. I need to know that his life and death made a difference. That he’s not forgotten. That his hope is not lost. That his legacy didn’t go unnoticed. <br />
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This part of the journey is the hardest of all. It’s challenging, and lonely at times. I’ve depended on many people to help lighten the load, and it's been really hard to be that person who needs so much. So many of you have ministered to me in the most amazing ways, and God seems to use you exactly when I need you most. <br />
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You all remind me often that nothing about Holden has been lost. I am humbled. I am grateful. And I am certain your prayers have brought untold blessings to our lives.<br />
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I try each day to grow closer to God, so I know who my baby is living with now. That has also been a struggle. It takes a mighty effort to get past the mad so that I can even try. <br />
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They say God's grace should be sufficient in seeing me through the darkest days, but honestly? Sometimes it isn’t. It’s hard to admit, but it’s the truth. Sometimes I hurt so much that nothing is sufficient. Of course, I’m mourning for my own loss, not Holden’s. I know where he is, and I do take some comfort out of that. But it doesn’t change the emptiness I feel. <br />
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My view of the world is bitter at times, even with the sweet in my life. But I hope that someday, next week or next year, my view will be a little bit different. <br />
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God’s grace is more than I deserve, and He gives it to me anyway. So today, I’m not asking Him to take the pain away. I’m just asking for His mercy. Praise God for His patience in moving my feet to a better view.Lindseyhttp://www.blogger.com/profile/14667677024767489726noreply@blogger.com4tag:blogger.com,1999:blog-6546349939258299564.post-17089143597247866442012-02-02T10:28:00.001-06:002012-02-02T10:29:17.048-06:00Happy birthday, HoldenHappy birthday, my little Braveheart. You would have been two years old today. I've been half dreading this day for some time now, while praying that God would give me the grace to celebrate your day with joy. And I'm trying- I really am. I'm struggling today, as I struggle every day, with the realization that my arms will never hold you again in this life. <br />
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It's still hard to accept that you're not coming home- That I am not your home anymore. <br />
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Are you having a good birthday? Do you even know what a special day it is? I try so hard to imagine what you're experiencing right now, but I just can't. My mind wasn't meant to comprehend something so perfectly complete. <br />
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I'm making the effort today- and it is a mighty effort- to be joyful and thankful for the time we were given, and not dwell on what we no longer have. It's harder than it sounds, to feel but not dwell.<br />
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But I am thankful, so very thankful, for the gift of you. Because of you, I have learned to believe in hope. I've learned that prayers are answered. I've learned to praise God for every day that brings me one day closer to you, while celebrating every little blessing along the way. As parents, we're supposed to teach our children, but all along you were the teacher. Thank you for teaching me what <em>grace</em> truly means.<br />
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You were always meant for bigger things than this ugly world, and I am eternally grateful for the short time you spent with us here. I thank God every day for loving me enough to let me be your Mommy.<br />
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I used to tell you all the time that I was proud of you. I am <em>still</em> so proud of you, my little man, and I always will be. <br />
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Before you, I believed in the possibility of miracles. Because of you, I <em>know</em> they're real.<br />
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Happy birthday, my sweet boy. You are so loved.<br />
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<div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/6F6t1WmCrWI?feature=player_embedded' frameborder='0'></iframe></div>Lindseyhttp://www.blogger.com/profile/14667677024767489726noreply@blogger.com3tag:blogger.com,1999:blog-6546349939258299564.post-88018812225350762992012-01-24T16:37:00.003-06:002012-01-24T16:44:11.081-06:00WelcomeWe have a new baby. I'm still recovering from the surgery and sick from some kind of infection. I have a chubby little boy attached to me 97% of the time. I haven't blogged in months... Yet somehow I felt drawn here today. I don't know why, but maybe it will happen more often. I don't have any good excuses for not updating the blog since November- I really have nothing. All I can say is it's hard to put myself here sometimes. I can't help but think of this as "Holden's blog", even now. I feel somehow wrong posting about our lives continuing here, when it seems as though time should have stopped on July 7th.<br />
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Time doesn't stop. The world doesn't stop spinning, even when it feels like the universe is upside down. God continues to bless our lives in unimaginable ways, every single day. Life is still bittersweet in so many ways, and it may be like this for the rest of my life. That makes sense in a way, since a piece of me will always be missing. <br />
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Despite the gaping hole in our hearts, we have so many reasons to be happy right now. We had a great Christmas with the girls here, and we had multiple Christmas celebrations with different groups of family. I spent most of those celebrations breathing through and timing contractions, but even that didn't take away from the joy of the season. I think we all had a rough spot Christmas morning, grieving the loss of our little man, but we had so many blessings to be thankful for that it tempered the grief a bit. Those sweet girls I am lucky enough to call my daughters are growing up so quickly. They are such incredible young ladies now, and I am so proud of them. I am reminded daily of my blessings... All four of them.<br />
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After keeping us all on our toes since the preterm labor scare and hospital stay in November, Carter decided he was quite comfortable staying put for a little while. I had constant contractions for weeks after going off all of the medications, but things would eventually slow down and stall out. I think I had the longest labor ever, but it was all worth it in the end. <br />
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We welcomed Carter William to the world on January 6th via c-section. We had some issues with the cord wrapping towards the end of my labor, and we all agreed it was necessary to get him out as quickly as possible. The surgery may have been a blessing after all, as he ended up weighing 8 lbs. 10 oz. at birth. He was a big boy, and he somehow manages to keep getting bigger every day. He's such an easygoing and happy baby! As long as he's fed, he's happy. And he manages to <em>always</em> be fed. :)<br />
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The hardest part, maybe for all of us, has been the inevitable comparisons to Holden. I love remembering Holden in all things, because one of my biggest fears is that he'll be forgotten. But I also need to remember that Carter is his own person. I need to remember to be thankful for that, for the gift of each of my children. Despite everything we've lost, we are still blessed beyond belief. God is good, all the time!<br />
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As proof of that, this is Carter. He joins big sisters Kaitlyn and Rylie, and big brother Holden. We are in love.<br />
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</div><div class="separator" style="clear: both; text-align: left;">(The picture is courtesy of our amazingly talented friend, Ren Morrison. More to come soon. :)</div>Lindseyhttp://www.blogger.com/profile/14667677024767489726noreply@blogger.com5tag:blogger.com,1999:blog-6546349939258299564.post-6482801000771675982011-11-08T16:27:00.000-06:002013-02-06T15:14:46.817-06:00PromisesIt seems I will forever be starting my blog posts with apologies. I'm so sorry, again, for the delay in updates. I know that if I updated more often it wouldn't be such a daunting task, but that never makes it any easier to get started. It's honestly just so hard to write, to put my thoughts in such a tangible format. I try so hard most days to keep it all in, and it's difficult to let it flow freely enough to write about sometimes. I hope that it gets easier as time passes, because this blog has been so useful in many ways.<br />
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My pregnancy is still progressing, right on track. I am a little over thirty weeks now, although I look like I passed forty a while back. We've had our share of hiccups and speedbumps, but overall things are going well. We were scheduled to go in for a follow-up echo on Halloween, but our cardiologist had to reschedule due to an emergency. I was pretty disappointed, but we'll schedule another appointment with her, hopefully when I go in for my next ultrasound at 32 weeks. I'll let everyone know what we find out, although I know I'm no longer reliable for timely updates. I'll try my best!<br />
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We are still collecting items, gift cards and donations for the care packages we're putting together for the families who are spending the holidays in the hospital this year. Please see my previous post for a full list of items we are looking for and the address, or send whatever you wish. Some of you have asked if monetary donations are okay, and yes, we will take anything. We can use the donations towards gift cards or any of the other items we need. I would like to have everything put together by the end of the month, so the clock is ticking. The hospital and the families there will always hold a place in our hearts, and we just want to be a part of paying the kindness forward. If you are able and willing, we would love to include you in our efforts.<br />
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We made a trip to Dallas last month to visit an old friend from CMC. While we loved all of the staff at the hospital, we became especially close to a few of the doctors and nurses. Dr. Koch is one of our favorites, and I still thank God that he was there with us for the last few days. We met him for lunch one day a few weeks ago and talked about those days. We also went over the autopsy report, because I'm one of those people who need detailed answers and explanations for everything. I won't get into all of those details here, because Holden had a lot going on in that little body of his. To make a very long story short, it was all related to his heart, as we suspected. His own heart gave out before a new heart was made available. We knew, but it still broke my own heart to see it in black and white. I guess I always thought that his angel heart would somehow arrive just in time to save him. That didn't happen, and four months later, it's still so challenging for me to accept.<br />
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This experience has shattered me, and I don't know if I'll ever be the same person. Honestly, I don't know that I want to be that person again. As much pain as I live with, I wouldn't give up the time we were given for anything.<br />
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The process of healing is so unpredictable. Even when I have good days, I feel slightly guilty. Like I don't have the right to feel normal anymore, because nothing is normal. Creating a new normal is an uncertain task, at best. The actual act of living takes a long time. Grief makes me not want to do anything but survive at times. Actually living proves much more difficult. But somehow, we always manage to make it through to another day.<br />
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My birthday is tomorrow, and it's yet another bittersweet day for me. My birthday gift last year was getting to hold my baby after his surgery, for the first time in a week. I would give anything for that same gift this year, but so much has changed.<br />
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A year ago, we were sitting in the CICU, waiting to see what would happen with Holden and his heart. Four months ago yesterday, we left that place that now holds the worst memories of my life. At least, we tried. You can't leave a place like that, memories like that, and not take some of it with you. I remember everything. The sound of the bedrails. The beep of the monitors. The smell of the soap. The hope, and the heartache in every corner of every room. <br />
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I'm sure it's not easy for any parent with empty arms to walk away from the memories, even when they torment. They're all we have. I know that others who have lost babies and children share my inability to separate sorrow from joy in life. I don't know that they'll ever be divided again, they are so tightly woven together. <br />
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I wholeheartedly believe that Holden is at peace with his Father right now. I believe, but I can't truthfully say that it always brings me peace or comfort. I know it should, and I wish it would. I would be lying if I said that I don't wish him back to me hundreds of times each day. Even knowing where he is doesn't always fill the void. I just want to hold him in my arms again, and I'm clinging tightly to the promise that one day I will. <br />
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My heart will always feel the void our Holden left behind, but another part of my heart is full of hope for the miracles of the two big sisters he left behind, and this new precious gift we never planned. Holden will always leave a place in the middle of our family that is so painfully empty, even as the rest is joyfully overflowing. That's yet another example of God's grace and mercy at it's finest... He makes my cup overflow, even as part of it is missing. <br />
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Holden will never return to me. Those words define my life right now, and I imagine they will define the rest of my life as well. He will never return to me. But one day, I'll go to him. My arms will be filled again. Not in the familiar little boy way that I remember so well and long for, but so perfectly different. Thank God for the promise of eternity. To believe in His promise in spite of our pain is a gift, and what a beautiful gift it is.Lindseyhttp://www.blogger.com/profile/14667677024767489726noreply@blogger.com2tag:blogger.com,1999:blog-6546349939258299564.post-63213157754437476562011-09-19T10:48:00.001-05:002011-09-19T10:48:46.933-05:00Long overdue, and longIt's been so long since I've updated this blog, I'm not even sure where to start. I guess the biggest news (for those of you who aren't my friends on Facebook) is that this baby is actually a boy- not a girl as we initially thought. We had our day full of appointments with the specialists a few weeks ago, and he looked perfectly healthy! The cardiologist did find one very tiny issue in his heart, but we're fairly confident that will resolve on its own. We are so relieved to know that this little boy is healthy and whole. We are painfully aware that many children aren't blessed with that gift, and we are so thankful. (On that same subject, a few of Holden's heart friends are facing surgeries, illnesses and scary unknowns this week. Please dirty your knees on behalf of these children and their families as they make it through the next few days.)<br />
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This past week has been pretty rough emotionally. I've been up and down (a phrase I overuse a lot these days), and the pregnancy hormones don't help my mental state at all. I have the highest highs and the lowest lows, and I don't know when that will get better. We're starting to get excited about meeting our newest blessing, but it's hard to reconcile that excitement with the grief we still carry. How is it possible to be so empty and overflowing at the same time? I'm not sure, but it is. I live it daily.<br />
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We needed to replace the floor in our bedroom before the baby gets here, so Trent and a friend got it done last week. I love the new and improved floor (that doesn't buckle and cave when we walk across it), but the downside to the improvement was clearing out the room and then getting it all back in. It's been a great opportunity to organize and pack away things we no longer need or use, but of course, Holden's things were included. Going through all of his stuff was very hard. Deciding what to keep out and pack away was even harder. It needed to be done, but relegating his entire short life to a box in our closet was heartbreaking. Even though his absence is so very real, it still seems very unreal at times. <br />
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One year ago today, we were on our way to Children's Medical Center in Dallas. Holden was scheduled for his first heart cath the next morning, and we were staying as guests on the 8th floor the night before his procedure. The cath was the first step on the way to his big open heart surgery, and while we dreaded the whole process, we knew it was a necessary one. It's hard to believe now that 365 days have passed since that first step.<br />
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Now, one year later, the journey has changed. It's far from over, but it's no longer the same path we started out on. We're all more than a little scarred, a little reverent about the events of the past year. Truth be told, sometimes I'd delete some of it if I could. And truth be told, I'd do it all over again- without question. I only partially understand the miracles that were made ours throughout this journey. And I'm ashamed to admit I've spent the last few months losing sight of those miracles.<br />
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I've spent a lot of time since the beginning of July feeling angry. I've been so wrapped up in the grief of what is missing in our lives, I've lost sight of the many, many miracles that have been gifted to us. I have two beautiful, healthy girls. I may not get to see them every day, but they are happy and growing into amazing little women. We have a healthy rainbow baby on the way, an unexpected blessing after the storm. We had 17 months with the strongest, most inspirational little man on the planet... My very own Braveheart. These are all miracles, and my anger has prevented me from being properly thankful for them. Being angry is exhausting. It's gotten me nowhere. Nowhere I want to be, anyway. <br />
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So I prayed, for the first time in a long time, to truly be done being angry. I prayed for understanding. For peace. I prayed to regain my vision of Holden and his purpose. Will my prayers be answered? In time, I believe they will. I don't know how much time... It isn't up to me. Getting rid of the anger won't get rid of the pain, but I hope that it will replace the bitterness in my heart with grace. <br />
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God is aware of my pain. He is aware of my anger, my hurt, my marriage, my children, my family. He is constantly, caringly, overwhelmingly aware. He holds every tear I've cried in the palm of His hand, and in the other hand, He's holding my son. Yes, God is aware.<br />
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So there it is. I need to remember one year from now and every year after that, that there is a purpose and a plan. There are miracles being worked every single day. There is still a lot of work to be done, in myself, in my faith, in the way I honor the legacy Holden left behind. But I know now it's necessary work. Work that will take us somewhere intentional, no matter the outcome. That's my goal... to live intentionally, with a purpose. To always strive to be better, and <em>do</em> better, because we owe that much to Holden's memory.<br />
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Our first act of living intentionally and paying our blessings forward will require your help. Many kind people give generously to the hospital and the children being treated. In fact, some of the friends we made while living there are collecting baby items to gift to the heart babies on their daughter's first birthday. We don't feel like there is a void in gifts and care items for the children, but we do feel like more can be done for the families who have to stay for prolonged periods of time. We would like to start making care packages/baskets to donate to the parents and families in the heart center. I know that many of my friends and family are amazingly talented and creative, and I'd love to hear your ideas. Our goal is to do the first drop-off at Christmas, and another on Holden's birthday. The items we have thought of so far are as follows:<br />
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1. Starbucks gift cards- I know it seems like a frivolous thing, but there were days when a double shot latte was all that kept me going. God bless whoever thought of putting a Starbucks in the hospital.<br />
2. Bibles and/or inspirational books- When the doctors don't always have answers, faith is the only thing left to cling to. I don't know how anybody can get through this kind of experience without it. <br />
3. Chapstick/ lip balm- Because dry hospital air is rough.<br />
4. Decent soaps and lotion- Because dry hospital air is rough, and the hospital soap makes hands crack and bleed over time.<br />
5. Soft, fuzzy blankets- I loved mine, and Trent and I fought over the one we had daily. Hospital blankets are about as comforting as the soap.<br />
6. Puzzle books- I'm partial to Sodoku, but to each his own.<br />
7. Gift cards- We can either use these to buy specific items for the families, or give them as gifts<br />
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Seasonal for Christmas (It may seem silly, but for many of these families, it is baby's first Christmas. It was really important to me to decorate and celebrate, even in the CICU. Please keep in mind that space is limited, so all items need to be small.):<br />
1. Small battery powered trees- We ended up being the only family on the floor who had a lit tree at one point, because hospital policy says no plug-ins, and ours was battery powered.<br />
2. General Christmas decorations- Again, please keep space limitations in mind. <br />
3. Special ornaments- Holden has a heart ornament that Trent's mom got for him, and I love it even more now. <br />
4. Again, gift cards that we can use to buy specific items or give to the families<br />
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Gifts and donations can be mailed to:<br />
448 Rains County Rd. 1275<br />
Emory, TX 75440 <br />
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It's past time to take the focus off our grief, and instead focus on paying forward the many kindnesses shown to us during Holden's hospital stay and beyond. We would be honored if you would join us in this effort.Lindseyhttp://www.blogger.com/profile/14667677024767489726noreply@blogger.com2tag:blogger.com,1999:blog-6546349939258299564.post-13950445698851983112011-08-15T14:01:00.004-05:002011-08-15T14:16:43.290-05:00Up and DownI decided to start this post off with the good news, since that seems to be in short supply these days. When I went to the doctor last week, the sonogram showed that I am probably closer to 16 weeks along. That's a lot further along than we had anticipated, but at least everything looks good- so far. (He also told us that he's pretty sure it's a girl this time. He's not 100% certain, but he's pretty sure. We'll see if he's right when we have the next sono.)<br />
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He started me on progesterone injections to help stop the early contractions I'm prone to, and we have an appointment next week with a specialist in Dallas for genetic counseling, a more in-depth sonogram and a fetal echo. Because of what Holden has been through, we are considered higher risk, and I don't know if I'll be able to sleep at night until we know that everything is okay. At last week's sonogram, the doctor said everything looked okay with the heart- as far as he could tell- but we'll need a closer look to be sure. I'm hoping and praying with all that I'm worth that this baby will be healthy. I want this child to have a chance... The chance Holden never had.<br />
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I still haven't shared much about the day we lost Holden. I may never be able to share the details. But I can tell you that I still hold on to so much from those hours that I have to daily lay it down in prayer, or I'd be crushed. I am forever thankful that I was able to hold my sweet boy as he let go of this world and all of the pain it held for him. I am forever thankful for the many doctors and nurses who frantically, tirelessly worked to save his life. We saw the true hearts of the people who work at Children's Medical Center that day, and we love them for that.<br />
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But that thankfulness doesn't take the pain away. I haven't found the answer for that one yet. I didn't turn to medication (as would have been so easy to do and, at one point, was heavily suggested by many people around me). I don’t want anything to numb me. The reality of it is that my son died, and I want to feel the void that he leaves in my heart. Not cover it up or medicate it, even for a little while. I want to remember every single thing about my little man. I want to remember what I miss so much.<br />
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I miss his open mouth kisses- when we were lucky enough to be on the receiving end. The way he held his mouth open like a little bird because he was too lazy to feed himself. Hearing him say "night night" with his cute little wave every time we headed towards the bedroom. Waking up to his smile inches away from my face- He woke up every single day with a smile, no matter how bad he felt or how horrible his day would be. The way he had to touch both Trent and me at all times throughout the night- one of us wasn't good enough, he wanted both. Walking behind his stroller for hours on end, guided by his grunts and squeals to let us know what direction he wanted to turn that day. His excitement about reading his books, and his love of turning the pages for me. I could keep going... There are countless things to list. <br />
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So this is my reality. It sucks, but it's mine. I think that’s why this point in time is the hardest so far…the shock has long since worn off and the harsh reality of what my life will be like for as long as I walk this earth is setting in. <br />
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What gives me hope to put one foot in front of the other is that I know my life doesn't end here. This isn't it. We have been given Eternity, where I'll be able to hold my sweet little man once again. That is what brings me hope even as I am crying. I sincerely wish everyone who mourns his loss finds that same hope. Hope is rewarded. Prayers are answered. Maybe not in the way that we ask for, but they are answered.<br />
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We prayed for a miracle and we got it. We prayed that he be healed and he was…perfectly. We're honoring His plan for Holden's life, and He will be faithful. Even when I can’t see the plan through tears and my entire body hurts with grief, He is faithful.<br />
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My devotion the other day was titled “Do you trust God’s Will for your life?” I thought about that a lot. More than I should have. If I'm going to be completely honest, I would have to say that sometimes I'm just not so sure I do. That's hard for me to admit. Nobody wants to be that “ye of little faith” person. But I'm sure that someone reading this completely understands. Some days it's just harder to find that trust.<br />
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Trust or not, our lives don't stop. We keep going, putting one foot in front of the other. Even when it hurts. And it often hurts.<br />
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We do it because it's God’s Will. And I'm learning to trust Him. Lindseyhttp://www.blogger.com/profile/14667677024767489726noreply@blogger.com5tag:blogger.com,1999:blog-6546349939258299564.post-11396235533109961522011-08-09T11:53:00.002-05:002011-08-30T15:35:22.905-05:00BittersweetI wish I could say that things around here have gotten easier, but that's not really true. Will it ever get easier? I'm not sure that this kind of hurt ever dulls or disappears. We're trying to adjust to a new version of normal, but it's a big adjustment. So much of our lives revolved around Holden, and without him holding it all together, nothing is normal anymore. We have to completely change our way of living, and that's a very slow process. Many days, I don't even want to get out of bed, so I don't. Other days, I can manage to distract myself and make it through the day with a minimum of tears and mini-breakdowns. We have many friends and family who have made distraction an easy task at times, and we are thankful for that.<br />
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We don't have the autopsy results back yet. They said it would take 4-6 weeks, and it's been a little over four. I'm not sure if knowing why will help anything, but I can't move on without knowing either. Those results are one of the last things hanging over our heads, so I'm praying we have some answers soon.<br />
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I'm still not sure I understand any of this. We prayed so many times for God to make Holden's heart whole. Well, his heart is whole now. He answered our prayers, just not in the way we had hoped for. I struggle daily trying to live with and without him. With him, because he is still very much alive here in our hearts and our home, and without him because memories are all I have left to hold now. Balancing those two realities is impossible. <br />
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Each day we had him with us was a gift, and though I wish we had more time, I have to trust that God's plan for Holden's life was fulfilled in 17 months. That kind of trust is really, really hard right now, but we know that He has a plan for our lives. <br />
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That became evident when I went to the doctor last week. Much to our surprise, we found out that I am pregnant... At least a couple of months along. (We'll have a better idea of a timeline once I have a sono to date the pregnancy.) That means that all of this happened before Holden even went into the hospital the last time, and we had no idea. Trent and I had talked about having another child, and we decided to wait for a little while because we just weren't ready yet. The best laid plans, right? Indeed, the plans we make for our lives are not our plans to make. It's like He knew that we would need a reason to face each day again. Something to plan for. Something to look forward to, even as we try to sort through our grief. This is very much a bittersweet time for us. We are thankful and so very blessed, yet it's hard to be fully excited about anything right now. We are praying, and trying to keep a strong hold on our faith. It's really the only thing that's a constant these days.<br />
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John 16:33 "I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world."<br />
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My mother uploaded the slideshow shown at Holden's service, for those of you who are interested in watching it. We had some technical difficulties at the service, so I'm glad that we can share the full show with you now. I don't know how to include the actual video in the blog, but you can follow the link <a href="http://www.youtube.com/watch?v=6F6t1WmCrWI">here</a>. <br />
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We thank you all for your continued support and prayers. I'm not as diligent about responding to every one's messages as I should be, but your encouragement is the only thing that has kept me going at times. We appreciate all of you, more than you know.<br />
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Lindseyhttp://www.blogger.com/profile/14667677024767489726noreply@blogger.com5tag:blogger.com,1999:blog-6546349939258299564.post-80899277668562184752011-07-18T12:08:00.001-05:002011-07-18T12:08:48.862-05:00TributesI'm still having trouble finding my words... I don't know that I have anything left in me to say at this point. My cousin (and Holden's godmother), Jennifer, wrote a beautiful letter about our little man. She gave me permission to share it with all of you here.<br />
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Ren Morrison, our sweet-hearted and generous friend who did Holden's one-year pictures and all of the pictures for his service, has also written a very touching blog. She has an exceptionally giving spirit, and she has been such a blessing to us. She included pictures of the service along with her sweet words, and you can find it all <a href="http://renmorrisonphotography.blogspot.com/2011/07/always-hope.html">here</a>. <br />
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We have been humbled and honored by the prayers and support from so many of you. We are so thankful. And until I find my own words, I am also thankful for our loved ones who are there to hold us up. We love you.<br />
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From Jennifer:<br />
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I'm stunned that it's been a week. It feels like 10 seconds and 10 years all at once. In some ways, it took Holden a long time to go home. In others, especially for those of us who have been with him so constantly during his 17 months among us, it seemed to happen so devastatingly fast. I'm afraid we'll be reeling for some time.<br />
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Everyone who will read this has experienced loss. Ours is no more severe or immediate than the pain of those who endure other hardships - parents gone too soon, sons or daughters deployed overseas, children who might have been. From experience, you know something of what we're going through. Jack and I had been so focused on the immediate moment, on fighting day to day, on supporting Lindsey and Trent whenever, however, and wherever they needed it, that we didn't get around to grieving for ourselves until Tuesday evening. It was then - and will be for a long while - that we grieve for the future Holden, for the child we would've helped guide through life, celebrated through birthdays and milestones and victories. The child who would say our names, spend sleepovers with us, know that his Uncle Jack was a total pushover, and his Aunt Jen would always be ready with a hug, a giggle and a snack. When we agreed to be Holden's godparents, we signed on to be constant, consistent presences in his life. And now we've signed on to honor his legacy.<br />
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One of the things that gets lost in Holden's struggles is the potential he always had for a future. Though his challenges seemed insurmountable, Holden so consistently defied medical prognosis and convention that we'd already started looking forward to his first day of school, his first caught fish. Holden knew pain that few of us will ever endure, but he also knew joy. He was a great source of joy. He loved being outside and riding on the tractor with his daddy. He loved his stuffed elephant (which was bigger than he was!), and snuggled with his soft little stuffed dog (only when he didn't think anyone was looking). He smiled with his eyes before his mouth. He was precocious, and loved teasing people with his "bull face": scrunched up nose, pursed lips, a cross between a laugh and a raspberry. He was an observer, and an excellent judge of people. And he was a charmer who hooked you almost immediately with those deep, soulful eyes. He loved things that made noise. To be read to. Music. He loved chasing bugs. He adored his sisters, and they always made their bubba smile. He put a lot of miles on his stroller, just being a boy outside in the dirt - as it should be.<br />
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We absolutely take comfort that Holden is now pain-free, that he's struggle-free. But his pain and his struggle didn't define his life. They weren't the sum total of it. When Holden's story is told, we pray that it is not a story of what Holden didn't have or of the opportunities he missed. We pray that it's the story of what he DID have, of the amazing gifts that God gave this sweet boy. Holden was born not with just a broken heart, but with a very special heart. He brought out the very best in those around him. He gave us strength, pushed us to do better and be more. He touched more lives in 17 months than many of us will touch in a lifetime. And he will continue to urge us to do more, to be better, to make a difference - so that we may live up to his legacy.<br />
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So thank you for being there for us, for sharing in this with us. Thank you for continuing to tell Holden's story. Thank you for continuing to lift up his hero parents, Lindsey and Trent, in prayer. They've never needed support quite as they do right now. Jack and I will always be Holden's godparents, and we will always stand with Lindsey and Trent. Thank you for supporting us as we support them. We couldn't do it without you.Lindseyhttp://www.blogger.com/profile/14667677024767489726noreply@blogger.com3tag:blogger.com,1999:blog-6546349939258299564.post-20543716355217575032011-07-13T20:17:00.001-05:002011-07-13T20:18:15.914-05:00Struggling for PeaceThis blog used to be cathartic for me. It started out as a way to chronicle our day-to-day lives, and as a way to keep Holden's supporters informed. It turned out that the blog was as much for me as them, and I hope that I can find some kind of peace through writing again. <br />
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I was so touched to see how many people came to honor Holden. I saw many faces that I hadn't seen in years, many faces that I had never seen at all, and many faces that I have seen often through our journey with Holden. People came from all over the state to honor our little man, and seeing the impact he had on so many lives was humbling. How many of us will go our whole lives without making that same kind of impact? He was one-of-a-kind, and irreplacable. Thank you, everyone, for knowing and honoring that yesterday.<br />
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People ask how I'm doing, and I don't know how to answer that question. Should I tell them, "Fine, thank you," and move on? If I'm going to be totally honest, I'm far from fine. We are all far from fine. I'm numb, and I'm lost, and I still don't know if it's hit me yet that he's never coming home. In fact, I'm positive that the full realization hasn't made it through my head yet. <br />
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I just never expected him to not make it through. Yes, I knew what kind of obstacles he faced. I knew how hard the journey was going to be, and I was fully prepared to walk it with him. I knew that his world was full of uncertainties, but I never prepared myself for one of those unknowns to beat him. I had actually gotten a little bit arrogant, thinking of how much he'd been through already. I was terrified for him, but it never even occured to me that this time would be different. He fought so hard in so many battles, and I just knew that he was going to fight and win again. How long will it be before I fully realize that he lost this time? I hope never... I don't know if my heart can take it. <br />
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Holden had a gift for stealing hearts. All babies are cute and loveable, but even in his worst moods, Holden could charm the pants off anyone. I wonder if deep inside somewhere, he knew he didn't have much time in this world. I wonder if he loved so much and so hard because he knew he had to fit it all in. Or maybe he really was just an exceptional spirit, sent here for the purpose of teaching us all to love, to live, to appreciate, to be more- because he was.<br />
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I can look back over the last 17 months and see so many things that God gifted to us as sacred memories. Holden's life has touched and inspired so many others, and that in itself is a gift. But I miss him. I want more than memories. I don't know why this path was chosen for us, but for reasons I'm not sure of, He chose to give us a different story to tell. I don't want to be a part of this story.<br />
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Does it ever go away? The hole in our hearts, our home, our spirits. Does it ever get better? It doesn't feel like it right now. He's everywhere here. I'm trying so hard to hold on to my faith, but honestly, it's so very hard. I want to understand the plan in all of this. I want to let go of my anger and trust that His plan is bigger than my own. But I'm human. I'm selfish. And I want my baby here, with me. I don't understand. I can't understand, and I'm really struggling with that. I try to remember that God suffered the death of His own son, and knows the pain that I feel. Somehow that doesn't make it any easier right now.<br />
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I'm not strong... I never have been. Any strength I had was pulled from my brave little man who had enough courage and heart for all of us. I feel so brittle and fragile right now, like I might shatter and break at any moment. <br />
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The only things holding me up right now are my husband, my girls, and our ever-present family and friends. We are blessed to live among such supportive, genuinely kind people whose faith, love and supportive spirits are giving us a strength that is hard to explain. I am on-my-knees grateful for all of you, every day. We wouldn't have made it without you.Lindseyhttp://www.blogger.com/profile/14667677024767489726noreply@blogger.com4tag:blogger.com,1999:blog-6546349939258299564.post-58047568696795932042011-07-08T18:10:00.000-05:002011-07-08T18:10:52.756-05:00Remembering HoldenI still haven't found words to describe what happened yesterday. I don't know if I ever will. The only comfort I have is in knowing that he's no longer in pain, and he has finally found complete healing in the arms of our Father. My little man endured more in his short life than many of us ever will, and the strength of his will still takes my breath away. He was always so much stronger than me.<br />
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He was brave, and he was tough. He was a miracle from the moment he took his first breath. He faced each day with a smile, no matter what the day had in store for him. He knew life was a gift, and that's something many of us forget. <br />
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By living each day with a broken heart, he taught the rest of us how to live with our whole hearts. I am so very proud of him, and I am eternally grateful and honored that I was allowed to be his Mommy.<br />
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Please join us in honoring his memory on Tuesday, July 12th, 3:30pm at Lake Fork Baptist Church in Alba, TX. Everyone is welcome.<br />
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If friends and family would like to make a memorial contribution, we ask that you go to <a href="http://www.organ.org/">http://www.organ.org/</a> or <a href="http://donatelife.net/">http://donatelife.net/</a> to do so in lieu of flowers. Holden was on the waiting list for a heart transplant for more than seven months. If he had gotten his gift of life sooner, he might still be with us. Raising awareness for organ donation would be a fitting tribute to honor his life. (For those of you who are uncomfortable with exchanging money online, contributions can be sent to Trent and Lindsey Sisk at 448 Rains County Rd. 1275, Emory, TX 75440. We can then make the donation in Holden's name.) <br />
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We are immeasurably thankful for all of your encouragement, support and prayers. I never fully realized how many lives Holden has touched and inspired, and it's a comfort to see it now. Thank you.Lindseyhttp://www.blogger.com/profile/14667677024767489726noreply@blogger.com4tag:blogger.com,1999:blog-6546349939258299564.post-71730819435852204222011-07-07T21:41:00.000-05:002011-07-07T21:41:00.682-05:00When Words Are Just Not Enough ...We all know Lindsey has a beautiful gift with words; she is understandably having difficulty expressing them at this time. They are thankful for all of their wonderful family and friends who have risen up and showered their family with support. They would say thank you for all the prayers and messages. Your support has meant more to them than some will ever know. <br />
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Holden was a fighter. So are Lindsey and Trent. Their job has been to care for Holden, night and day, while loving his every breath. Now their job will be to figure out how to move on, to find peace with Holden's passing over. To know he's in a much better place, happy, free of pain, free of feeling sick all the time. He's whole and with God. In the meantime, Lindsey and Trent are still here on this earth without Holden. It's going to be a difficult walk, more difficult than anyone ever imagined. They will need our prayer's for a while longer to help hold them up under their precious loss. Please keep the prayer's going for Lindsey and Trent. Holden will always be forever young. May he rest in peace and remain a part of all those he has touched. His memory will be forever treasured.Lindseyhttp://www.blogger.com/profile/14667677024767489726noreply@blogger.com9tag:blogger.com,1999:blog-6546349939258299564.post-59632795045047557682011-07-07T10:52:00.000-05:002011-07-07T10:52:45.493-05:00SurgeryHolden went into surgery about 45 minutes ago. They'll attempt to place catheters for dialysis (which he desperately needs), and also check his upper and lower bowels to make sure he doesn't have dead tissue causing the sepsis in his body. The nurse just updated me, and he's still stable so far. They are attempting to place one of the catheters now. <br />
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We are so grateful for the many, many prayers lifting our little man, and we ask that you continue them. He's in a bad place right now, but he is strong. He is a fighter, and always has been. We know that miracles have been worked through him in the past... We can only pray for one more.Lindseyhttp://www.blogger.com/profile/14667677024767489726noreply@blogger.com7tag:blogger.com,1999:blog-6546349939258299564.post-27630811727604930252011-07-07T06:13:00.000-05:002011-07-07T06:13:55.322-05:00UpdateHolden made it through the night, but his latest numbers don't look as good as expected. We're trying one last drug, and praying it makes a difference. Thank you, everyone, for your prayers. We feel them.Lindseyhttp://www.blogger.com/profile/14667677024767489726noreply@blogger.com2tag:blogger.com,1999:blog-6546349939258299564.post-661042060887807542011-07-06T22:21:00.000-05:002011-07-06T22:21:53.240-05:00Prayers NeededI don't have the energy to go into a lot of detail, but today has been the worst day for all of us. We didn't even get around to the surgery, as Holden crashed shortly before and had to be intubated. The doctors worked for hours intubating him and getting more lines in (for meds and pressure readings), and then it got worse. We came so close to losing him. Holden's heart stopped six times, but compressions were able to bring him back. They had a lot of trouble stabilizing his heart and blood pressure, and he's still not anywhere near out of the woods. He's holding his own at the moment, but they're having to increase his epinephrine drip in order to keep him "stable". The doctors weren't terribly optimistic about his ability to make it through this episode and the night, but we know that there's always a chance. If he can hold his own through the night, we'll try again for the surgery tomorrow, and hope for better results. The bottom line is very, very bad. We are in a horrible place right now, and all we can do is pray. Please say a prayer for my little man tonight... He needs them now more than ever. Lindseyhttp://www.blogger.com/profile/14667677024767489726noreply@blogger.com10tag:blogger.com,1999:blog-6546349939258299564.post-50877176288097856292011-07-05T19:58:00.000-05:002011-07-05T19:58:29.961-05:00Brief UpdateHolden went down for an echo and abdominal sonogram earlier this afternoon (neither one told us anything new), and when we came back, his blood pressures and temperature dropped really low. Given the severity of the rest of his problems, they wanted him to be in the ICU- just to be safe. <br />
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He has so many different things going on right now, nobody knows where to start. We're really concerned with both his liver and kidney numbers right now, and if he doesn't start peeing soon, the renal team is going to want to take more action. We're praying he starts peeing before then!<br />
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We originally thought that all of these problems might be stemming from dehydration from his c-diff infection, but that doesn't explain the elevated liver enzymes or the acute pain episodes. We know something more is going on with him, we just haven't figured out what it is yet. <br />
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Thankfully, Holden's napping in a morphine-induced stupor at the moment, so he's feeling no pain. Maybe we'll have it all figured out before he wakes up!Lindseyhttp://www.blogger.com/profile/14667677024767489726noreply@blogger.com1tag:blogger.com,1999:blog-6546349939258299564.post-29059185756345081522011-07-05T10:45:00.000-05:002011-07-05T10:45:00.984-05:00Here We Go AgainI don't even know where to start this time. We're back at Children's, and Holden has all kinds of crazy things going on. He hasn't really been acting right since we brought him home on Friday, and it got progressively worse through the weekend. Yesterday afternoon, he started crying and then screaming, and he didn't stop for six hours. He was clearly in a lot of pain, so we decided to bring him in to the ER. By the time we got here, he was hysterical and dripping sweat, and the pain was causing breathing issues. They got him in quickly, started an IV (not so quickly), and gave him some morphine for the pain. Thank God for the gift of morphine! He immediately calmed down and went to sleep, and the rest of the admission process went pretty well. We're on the 8th floor again, probably for a while. (And we ended up in the same room that we lived in for three months here... I don't know if I like that coincidence or not.)<br />
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They've run the full spectrum of labs on him, and the numbers are a mess. His BNP is almost 28,000 now, and we're still not sure why. He'll have another echo this afternoon to make sure his heart function hasn't deteriorated. His BUN and creatinine (kidney numbers) are both elevated- 71 and 1.0- and they've actually gotten worse since we started him on IV fluids last night. We've already talked to the renal doctors, and he'll have an abdominal ultrasound this afternoon as well. I don't know if that will show us anything, but it's worth a shot. His AST and ALT (liver enzymes) are also elevated, and we don't know why. The good news is that his electrolytes have remained fairly stable, and his amylase and lipase (pancreatic numbers) are normal. The doctors were concerned that we might be dealing with pancreatitis again, given his level of pain yesterday, but that's been ruled out. He still has the c-diff infection, and it doesn't seem to be responding to the antibiotic he's on. We'll talk to that team later today, and hopefully come up with a new plan.<br />
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So we're here again, with more questions than answers, and it's still as maddening as it's always been. We have a lot of doctors on a lot of teams working on different parts of the puzzle. I hope and pray they can find out what's going on and provide my little man with some comfort. As always, we are so grateful for your continued support and prayers.Lindseyhttp://www.blogger.com/profile/14667677024767489726noreply@blogger.com2tag:blogger.com,1999:blog-6546349939258299564.post-53655433552618985902011-07-02T19:09:00.001-05:002011-07-02T19:11:17.140-05:00Home... For NowWe're home, but I don't know if we'll be staying... When we got home yesterday evening, Holden passed out for a few hours and then woke up screaming and crying miserably. I finally got him to sleep for the night after a very traumatic bath, and he slept until 10am this morning. We thought it was just exhaustion from the hospital stay, but now I'm not so sure. <br />
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We took him to the hospital lab this morning to check his electrolytes, BUN and creatinine. All of those numbers actually looked pretty good, but now we have new issues. After giving him fluids while in the hospital, he puffed up a little bit and stopped peeing. (This seems to be a common theme with him whenever he gets IV fluids.) He was dehydrated when we started the fluids on Tuesday, he wasn't getting full feeds while admitted, and he still has diarrhea from the c-diff infection, so we thought he just didn't have anything to pee out. <br />
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Last night, we started him on a sodium supplement to bring his numbers back up (which worked beautifully, according to his labs), but the salt in it has only caused him to retain more water. He's been so tired and out-of-sorts today, and he's been acting so miserable. When his respiratory rate went up and his work of breathing got too heavy, we had to put him back on oxygen. He hasn't had to be on oxygen support since we left the hospital for the first time back in March, so this isn't a popular choice. <br />
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Until we can get some of this fluid out of him, he's going to have trouble. I feel like we've been in this exact same position before, because we have. We prayed and did the pee dance many times during his stay in the hospital. <br />
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His stomach is starting to look a little bit distended again, which we know can be the beginning of bad things for Holden. We gave him an extra dose of diuretics this afternoon, and we haven't seen anything from it yet. We're going to try another double dose this evening, along with some sodium-free formula, and hopefully that will help turn things around for him. If not, we'll be heading back up to Children's in the morning. And of course, if he gets any worse tonight, that will mean an ER visit. <br />
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So if you get the chance this evening, please say a prayer for our little man. Specifically, please pray for pee, once again.Lindseyhttp://www.blogger.com/profile/14667677024767489726noreply@blogger.com0tag:blogger.com,1999:blog-6546349939258299564.post-85934518586636837932011-07-01T12:10:00.001-05:002011-07-01T13:03:59.857-05:00Short UpdateI don't have any big news to report, and we're just kind of hanging out waiting for a definite plan at the moment. His BUN has improved, but his BNP is back up to 26,500 and his sodium levels are still really low. However, his sodium has always run low, and there isn't much we can do to help lower the BNP (especially since we still don't know why it's jumped so high to begin with). I'm not really sure what they're doing here in the hospital that we can't do at home, so we're trying to push the doctors to come up with a better plan for us. We want to go home today, and the doctors want us to stay until at least tomorrow. We're praying and doing our best to change their minds. I'll update more again when we have some news, and hopefully I'll have a chance to write a more detailed post next time. Thank you again for all of the prayers and encouragement... We are grateful for all of you!<br />
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(Updated to add: Against the doctor's better judgement, we talked her into letting us go home today. We'll have to follow up with labs over the weekend and come back in if anything changes, but we're going home!)Lindseyhttp://www.blogger.com/profile/14667677024767489726noreply@blogger.com2tag:blogger.com,1999:blog-6546349939258299564.post-18752630774493622762011-06-29T22:40:00.001-05:002011-06-29T22:45:55.201-05:00Back AgainThis is going to be a very short post, because I'm exhausted and my little man is crying for me to lay down with him. We came in yesterday for Holden's appointment with the transplant team, and they decided to keep him for a few days. None of his issues are huge deals, and he's not facing anything he can't handle, but it still just sucks to be back here. He has a few different things going on, and hopefully they can all be dealt with quickly so we can get our boy back home!<br />
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His kidney numbers (BUN) were really high, probably due to dehydration. They wanted to see what would happen with the number if we started him on IV fluids, and thankfully it's working so far. (Slowly, but the number is coming down.)<br />
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Some of his electrolytes were low as well, so they wanted to keep an eye on those numbers. It's not usually a big deal for a normal person to have low potassium, but for a heart baby it can be a bigger deal. If we can get those numbers stabilized, that will be one less thing to worry about.<br />
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When they measured his BNP (the number used to measure the severity of his heart failure), it came back showing a whopping 24,000. That's up from 5,000 last month, so it's a pretty big jump. It's down to 17,000 today, but that's still really high. I think it's confused everyone, since the echo didn't show any major changes in function. With a jump that high, we would expect to see the effects on the echo, but Holden's never played by the rules. <br />
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And since he needed one more thing on his plate today, his cultures came back positive for c-diff. It's a bacterial infection in the gut, and people who are on frequent antibiotics are more susceptible to catching it. It's treatable, but it's just another speedbump. <br />
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I've known something has been off with Holden for a while now, since he hasn't been acting like himself for at least a couple of weeks. His behaivor has probably been a combination of all of the above factors. I hate that he's back as a guest of CMC, but I'm glad we're getting to the bottom of everything so that he can finally begin to feel better. We'll be here until his labs come back looking a little more normal, and hopefully that will be sooner rather than later! Holden always manages to surprise us, so maybe it will be a pleasant surprise this time around.<br />
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I'll update more tomorrow after we've all gotten some sleep, but I've outlined the basics for those who were wondering. Thank you all so much for your kind words... I can't tell you how much they mean to us. Please don't forget to add Keegan and his family to your prayers as well... They are still struggling, and I know they can use the lift! We truly appreciate each one of you who continue to follow Holden's story, and we are so very grateful for your support and prayers.Lindseyhttp://www.blogger.com/profile/14667677024767489726noreply@blogger.com0