August 26, 2019
  • 11:37 pm Fall 2018 Pictures
  • 1:37 pm Halloween Photo Drop
  • 4:35 pm Heartiversary Celebration
  • 4:32 pm Fontan Clinical Studies
  • 4:18 pm Tomorrow is Holden’s Heartiversary

These aren’t the cake smash pictures I wanted, or the outfit, but I am so thankful Holden is alive. He’s made it through such a tough year, and we weren’t ready to say good-bye.

There are many difficult things from this weekend–so many. One of the hardest parts is seeing Holden scream in pain, and also seeing him move backwards in development. Yesterday morning I had a son who was walking all over the lobby of Ruby, pushing the end tables in front of Starbucks all over the floor. People commented on how strong he seems for his age. Yet, today I brought home a boy who can barely walk or sit up straight, who I have to hold onto the back of his neck to keep him upright, who’s arms and legs are now made of jelly.

The doctor and the neurologist feel hopeful in that he’ll make a full recovery, but this is not how I anticipated my son spending his 1st birthday. We had a huge celebration planned– to mark an achievement in CHD babies– my happy, healthy boy.

One thing for sure is that your life can change in an instant.

One of my prayers while I was in the waiting room was “God, I know you gave up your son, but please, I’m not ready to give up mine.” It’s a selfish prayer, but one that God answered in my favor. However, it wasn’t without the reminder of how much he went through when he gave his only son.

It’s true that I’ve seen a team of doctors and nurses standing around my kids too many times. As soon as I rounded the corner to that glass room, I knew their facial expressions.

There’s a lesson of trust and peace in the Lord that I’m learning. I’d like to say I had peace when I saw their faces– I didn’t. I still have more to learn. Holden’s next surgery will be a big one, especially after this and his heart cath.

Please pray for both Dustin and I in having that peace and trust.

I’m tired, so I don’t really know how to end this post, but I wanted to get my thoughts on here. Maybe it will help one of you– maybe just myself.

I should least end with saying that being home has really helped him. Once Holden was home, the first thing he did wastempt to stand and walk. Later he played with his toys and laughed with Corbyn. Hearing them laugh together was so special.

Lastly, we just need prayer. Tonight Holden was so frustrated when he continued to fall as he tried to walk and climb. Corbyn, first, did really well, but as the night went on she decided some negative attention-seeking behaviors were necessary. Although we had to follow Holden around the house to ensure his safety, we really did try to include Corbyn. It’s still hard for her. Dustin and I, like I said, peace and trust. I also need patience. I’m so so exhausted, so my patience level is low.

I’ll end with “Happy Easter!” Jesus didn’t just die, but he also rose from the dead, defeating death itself, And that is worth celebrating!



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