It'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.)
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.
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.
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.
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.
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.
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.
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.
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 do better, because we owe that much to Holden's memory.
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:
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.
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.
3. Chapstick/ lip balm- Because dry hospital air is rough.
4. Decent soaps and lotion- Because dry hospital air is rough, and the hospital soap makes hands crack and bleed over time.
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.
6. Puzzle books- I'm partial to Sodoku, but to each his own.
7. Gift cards- We can either use these to buy specific items for the families, or give them as gifts
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.):
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.
2. General Christmas decorations- Again, please keep space limitations in mind.
3. Special ornaments- Holden has a heart ornament that Trent's mom got for him, and I love it even more now.
4. Again, gift cards that we can use to buy specific items or give to the families
Gifts and donations can be mailed to:
448 Rains County Rd. 1275
Emory, TX 75440
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.