Over the next couple days, Corrie and I continued to wrestle with one question…”Why?” This didn’t make sense. We knew God loved us and Brooklyn, but why would He allow this to happen? There were many difficult conversations with God, each other, family, friends, doctors, etc. It seemed like we couldn’t get away or out of the messiness. Additionally, Corrie and I had to make the hardest decisions we’ve ever had to make regarding Brooklyn’s care. I’m still angry that we had to make these decisions. I hate that we had to decide then give DNR orders to the doctors. It’s frustrating because it still makes me sick to my stomach. Why did we have to make these decisions at 27 years old with our first kid? Our prayer during this decision making process was that God would unify Corrie and I around these decisions. We didn’t seek counsel from family or friends. This was our decision and will always be our decision. Thankfully, the Lord was gracious and we stayed unified around the fact that we wanted to do what was best for Brooklyn and ‘comfort’ or palliative care would provide that for her. The pain & suffering that Brooklyn would go through while potentially experiencing multiple intubations & subsequent extubations, CPR, heavy medications, open heart surgery, etc. didn’t seem like a pleasant life for her considering her diagnosis and limited time.
So…the shift. We made the decision that it was time to start celebrating and enjoy Brooklyn every moment and day God gave us with her. We’ll celebrate her now and grieve when it’s time to grieve. We’re clear that we are blessed by the fact that she was born and has had many more days than most babies with Trisomy 18. Most are still born and those that aren’t typically don’t make it past the first week or two.
We wake up and choose to enjoy her, celebrate her, and do ‘normal’ things. It definitely is a choice because we feel like our default is to focus on the negative and how we won’t get to see our daughter go to her first day of Kindergarten, etc. Like I said before, this is a constant struggle.
I can honestly say that we have only been able to make these difficult decisions and continue to celebrate her day after day because of God’s strength. We know that strength, peace, and joy more than any other time in our lives. The Lord’s strength is good, never-ending, and exactly what we need. For reasons seen and unseen, He has entrusted us with the care of Brooklyn. We’ve definitely asked “why us?” because we don’t feel able to take care of her. We’ve prayed for the strength and ability to do this, and He has delivered…every time. I’m very thankful for that!
Our first walk outside of the NICU
Brooklyn’s first time outside. Mormor was able to join us. (Grandma in Swedish – Mother’s mother)
We read a book to her on our second trip outside. She also got to touch real grass!