Daniel has had a really crazy few weeks. He had his Glenn surgery early. He developed a coarctation of his aorta, which sent him into heart failure, which made the Glenn necessary. When babies have the Glenn early, it can be difficult recovering. Their blood vessels are small because they are small. Because of Daniel’s small blood vessels (aka pulmonary hypertension), he has had to take baby steps.
Many times it feels like he takes one step forward and two steps back. He had to be re-intubated twice after the Glenn. He kept having secretions in his lungs, and his left lung collapsed. He also developed pseudomonas and stenotrophomonas, and he had serratia from his last hospital stay.
Daniel was finally extubated for the third time on Wednesday, November 28th, the same day TJ passed away. Since Daniel was extubated, he has done well. He is smiling again and back to his sweet self. He absolutely loves snuggling and just gazing into my eyes. We have a great love between us. Every time I see Daniel smile, I think of TJ. I realize how incredibly blessed I am to have another moment with my sweet boy. I treasure every single second with Daniel. It has taken this experience with Daniel to help me realize how precious and fleeting life is.
When Daniel looks at me like this (above), it makes my heart melt. I feel I would do ANYTHING to keep him smiling. When I think of everything he has been through, the love we have, the sheer joy on his face makes it all worth it.
How much is too much, though? Watching Daniel suffer for three weeks has been sheer hell. I wrote a previous post titled, “Is the pain worth it?” I went back and re-read it this evening and realized I had only considered MY pain. I wrote that blog post from the comfort of my own home, with my miracle baby lying next to me in his swing. Re-reading it in the hospital while looking at my suffering baby boy makes me realize I missed a huge point– what about Daniel’s pain?
Daniel’s pain is unfathomable for most of us. Thank God he doesn’t have a frame of reference for it. He doesn’t know what life is supposed to be like. All he knows is his normal. Antibiotics, IVs, surgeries– PAIN. Yes, we had 52 beautiful, pain-free days at home. Yes, he knows unparalleled joy– the joy of snuggling with mama after being intubated for three weeks; the joy of hearing David’s and Daddy’s voices talking to him; the joy of seeing mama’s smiling face when he wakes up from the haze of sedation. But all of those wonderful things can’t minimize the fact that Daniel has to suffer in order to live.
On my heart moms group on Facebook, a woman recently posted that she is pregnant with her second child. Her first child died at two months of age from complications from her congenital heart defect, and the child with whom she is currently pregnant has the same defect. One mom posted a comment, writing, “How did you decide to keep your baby, after going through what you did with your first? How did you feel about bringing another baby like this into the world, knowing what he will have to suffer?”
It was so weird that I read that this morning because last night I actually had a nightmare. In the nightmare, I was pregnant again with another baby with HLHS. It was the worst dream I’ve ever had, not because of my pain, but the thought of what another little baby would have to go through. Why do we choose to fight for such a pain-filled life? How much is too much?
I fight for Daniel’s life because he has hope for a future, a happy future. I fight for his life because life is precious, and Daniel is a gift from God. He is a gift uniquely placed in this world as Brian and I’s child, in this day and age of medical technology, in Texas close to an incredible medical center. He was born in 2018, when a premature baby with HLHS can have hope to LIVE, and live well.
I fight for Daniel because I am compelled to do so by a force greater than I am. When people say, “God has great plans for this little one,” I can honestly say, YES! He does. He is already doing incredible things with Daniel’s precious life.
I hope I have the strength, courage, and peace to let Daniel go should it ever become evident that his time on this earth is done. I hope I never have to face that for him or for David or Hannah.
This world is filled with so much pain, but through the pain we become conformed to the image of Christ. This is absolutely impossible to understand unless you’ve been transformed by the Spirit. When you have nothing, you realize you have EVERYTHING. You realize the only source of peace is God. You realize His plan is unfolding right in front of you and out of your hands, and it always has been but you were too blinded to really see it. You realize what His grace and mercy look like, and you tangibly feel it. You start to sincerely love people and want to share everything with them, not because they are fun to be around or nice or pretty or strong, but because Jesus loves them and commands you to do so.
Peter explains this transformation when he writes, “In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed. Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, for you are receiving the end result of your faith, the salvation of your souls” (1 Peter 1:6-9).
I know what this “inexpressible and glorious joy” feels like. I look at my sweet baby boy lying in his hospital bed, knowing that any moment anything can happen. I am scared that his chest X-rays look cloudy again. I am worried that he will have another setback. I am worried he will develop some random thing that no one sees coming and he will die. I am worried he will suffer more and never go home and then die. Here’s where the joy comes in–when one fear spawns another and I’m down a rabbit hole of worry, I remember Romans 8:35, 37-39: “Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.” What incredible peace! What an AMAZING promise! No matter what happens to Daniel, NOTHING can separate him from the love of Christ.
It brings tears to my eyes reflecting on this glorious truth. To God be the glory, forever and ever. Amen.
“Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.” (2 Corinthians 4:16-18)