Last night was the first night of Reagan’s life that Rob and I slept under a separate roof than our daughter. I feel guilty and terrible, but Rob and I needed some sleep and the Ronald McDonald House had a room for us to do just that.
I woke up at 5 a.m. angry and full of despair, I couldn’t go back to sleep, so I decided to write.
To say that we are heartbroken over this would be the understatement of the century. We look at pictures and videos from just a week ago, and that girl is no longer here with us. I miss her terribly. How could something like this happen so fast? One minute she was playing with us and the next minute the very essence of Reagan…her personality, her laugh, her smile, her chattiness her sweet little self was ripped away from us. She was ripped away.
We have cried so many tears, I can’t even keep track of all the things we have mourned and grieved that we will no longer be able to do with Reagan. Our lives were changed in an instant and learning how to deal with that is a tall order.
Friday morning, the Neurologist went over Reagan’s MRI. He showed us that her basal ganglia was badly damaged. It looks like a butterfly on the MRI and he said it’s not just one section that’s damaged, it’s the entire thing. Everyone is in agreement that the damage is due to her GA-1 condition, and b/c of the basal ganglia being damaged, the seizures were a result.
We did everything right! The diet, the blood tests, we were careful where we took her, she didn’t go to daycare. Even to this day, her blood tests are completely normal. I asked her Dr. how this could happen without warning and she said the blood gives us an indication of what’s going on in the body, but not the brain. To test what’s going on in the brain you need spinal fluid, and no one will test that on a regular basis…not even researchers. I looked at her straight in the face and said, “Did you fuck up? Did we? Did the Dr.’s here taking care of her for RSV?” She said no, that unfortunately this can happen. But Rob and I were so hopeful that b/c this was caught on newborn screening and we had a plan that we could overcome this. Did we doubt God too much? Did we rely on our own strength too much? How come this is where we find ourselves?
Rob believes, and I agree, that on Tuesday at 6:40 p.m. when Reagan’s entire disposition changed, her basal ganglia was harmed and gave out. It was like a mac truck hit her body and in ONE SECOND was completely dazed, limp and confused. And now that is everyone’s reality.
Her seizures caused some damage in the front of her brain…little spots here and there, but the Neurologist said what her GA-1 did to her is worse than the seizures. Seizures you can control, you can overcome…you can’t overcome what kind of damage is in her brain. It is irreversible. God would have to perform a serious miracle, but there’s no drug, no therapy, no earthly thing that can be done to reverse that and bring her back to us. (**Side note: I know the FB update said she may have dystonia, and that’s unknown still. Her uncontrolled movements made us think that, but it could be another movement disorder. It’s too soon to tell).
The Dr.’s say she’s still recovering, but she looks spaced out. They say she knows who we are, and she looks at us. I asked her where Mimi, Dada and Mamma were yesterday while holding her and her gaze moved in those directions as if to acknowledge us.
Every single night since we found out about Reagan’s GA-1, we prayed for her, not only throughout the day, but as part of her bedtime routine…and as I write that, I know that routine, which was a sacred ritual, will undoubtedly change. We used to bathe her every night, and then Rob would read to her while I fed her a bottle, and then we’d pray and sing three songs before she went to bed, Jesus Loves Me, Amazing Grace and Silent Night.
Rob looked at me with tears so full in his eyes and a voice he could barely muster out and said: “We prayed every single night for God to protect her, we prayed for a legion of angels to surround her crib and our house, to keep any sickness and illness at bay, and that if she came into contact with anything for her to not be affected. We prayed that God would help her overcome her GA-1 and ultimately heal her from it. We prayed for continued milestones to be met, for her to walk and talk and have friends and go to a good school and to be smart and to love Jesus and accept him as her savior. We prayed for her future husband.”
Rob said, “I have never prayed so much or so hard for anything or for anyone in my entire life!”
We are constantly asking “why” and I hate that question b/c there are never any answers. All our dreams are gone. They are replaced with unknowns and anger for what our future holds. Our life verse, Jeremiah 29:11 says God has a hope and a future, plans to prosper us and not to harm us…how does this plan align with that verse?!
This morning I read a verse from Isaiah 55:8-9: “For my thoughts are not your thoughts, neither are your ways my ways, declares the Lord. For as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.”
To me it’s such a battle to lean on Jesus b/c I know he’s the only one who can provide us any comfort at all, yet the decision to allow Reagan to turn into what she is now came from Heaven. So I’m going to the source who agreed to let this happen to my daughter to bring me comfort too? I want Reagan to be how she was…or I want her to go to Heaven and be completely well and whole. It’s not fair for to her to live like this, it’s not fair to anyone. Now, her awesome personality is gone and I wanted her beautiful self to share that with the world as she grew up. She is so beautiful…everyone always stopped us when we were out to comment how gorgeous she looked, and the nurses are still doing it. She’s still so beautiful.
God, I miss her so much!!!
Having a child with disabilities has been a fear of mine since I was a teenager. And I hate how God is making me face this. My heart gets ripped out every time I see a little kid talking with his parents around the hospital, or playing or jumping in the lobby. That’s not going to be Reagan. We aren’t going to be able to take her places for her to enjoy…the Dr.’s have told us we are now to help “manage her care and make her comfortable.”
I hate hospital stays that involve talking with social workers. I spoke with one yesterday to discuss how we would care for Reagan. I don’t want to bring her home like this. The social worker mentioned homes that parents put children in if they can’t take care of them, and they visit their kids. Visit. I’m not divorcing my child…she’s still my child and I’m not going to have visitation with her. I want her in my home.
The next option presented was a medical day care, she would go there and get therapy, and it’s run by nurses. I have always taken care of Reagan…when I needed to work, Rob or my mom would watch Reagan and we had a good system worked out and I loved having her home. Even before Reagan came along, I never wanted my child to go to daycare…it just wasn’t something I wanted to do. And now, sending her to daycare, something that the Dr’s wanted us to avoid prior to this crisis, is now what they recommend so she can get the treatment she needs. Rob said he always wanted to take his daughter to school…just not that kind of school. We looked forward to school days where we’d do breakfast before or lunch after. So many things we dreamed, are gone.
The third option was in home nursing. As you can imagine, that can be quite expensive so I’m not sure that’s really an option.
My head just hurts. And now it’s a little past 6 a.m. and we need to get ready and head over to our baby girl and love on her. Please just pray for us to wrap our heads around our new circumstances and for strength. We feel so weak and the grief and loss we are experiencing is just tormenting us.