Reagan – 24 hours in

April 12, 2014

Filed in: GA-1, Reagan

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.

comments +

  1. Monica Richter

    April 12th, 2014 at 11:49 am

    Dear Rob and Anne Marie,

    Thank you for sharing your story. Our hearts brake at your pain and your new reality. Your little angel brought so much joy and meaning into your lives and it will be there forever. You proved to be great parents, filled with love and wisdom.

    We cannot understand many things that happens in our lives, we tend to be grateful for the joyful ones and question the hard ones. Is it all God’s doing or not doing, I don’t think so. But He is the only one who can help us discern and find peace and a purpose.

    Reagan’s life has a purpose. She brought the best in you as children usually do. Her circumstance is a lesson to be learned, lived and share. Your agony and story will help others. Your grace and faith will pull through to help her and help yourselves. God is with you and in you.

    May God continue blessings you all and give you the wisdom and strength you need.

    Holding you in love and prayer.

    Monica and George

  2. Jill

    April 12th, 2014 at 12:34 pm

    Anne-Marie: Reagan isn’t gone….she’s just hiding and playing peek-a-boo! She’s just asking you to find her. Have you followed the FB page: Tripp Hallstead Updates. You may want to contact them. Tripp’s mom went thru a sudden drastic change with her 2 year old son about a 18 months ago. She would be a good person for you to learn from in how to deal with the changes in your life. ((((hugs))) Jill

  3. Rachel

    April 12th, 2014 at 2:53 pm

    Jill,

    I don’t know if you purposefully meant to say this but your comment is completely disrespectful and ignorant. If you’re not sure what to say it’s better not to say anything at all.

  4. Jill

    April 13th, 2014 at 3:36 pm

    Rachel, this was meant with the best intent and not disrespectful in the slightest. I’m sorry that you misinterpreted my comment. My heart is heavy with sorrow for Anne-Marie and Rob and I only wish the best for them. You and I do not know each other. If we did, maybe you would have seen where I was coming from.

  5. Clay Hanika

    April 12th, 2014 at 3:41 pm

    Praying for you guys. Our little girl is at the ER right now getting something checked out and it’s scary. I couldn’t even imagine what you are going through. Proverbs 16:1 says we can make our plans but the final outcome is in God’s hands. When I was in the hospital with my staph infection in my knee in college, a nurse told me that God always has a plan no matter how dark the here and now seems. God sees everything from beginning to end and he has a way of bringing about incredible blessings even when we can’t even possibly imagine how when we can only really see the here and now. I thought she was crazy but she ended up being right. I know your here and now is incredibly dark and stormy but I pray that God takes this situation and brings you blessing in the end somehow. Someday you will look back on this terrible situation with a full understanding of why.

  6. Camille

    April 12th, 2014 at 3:57 pm

    Dear Anne Marie & Rob,
    I can’t even imagine the pain you are feeling! My heart hurts for you as I read your updates. Not knowing “why” we have to walk certain paths is so hard but we have to trust that the Lord knows all. You both took such good care of that precious baby girl and I know you are excellent parents.

    I know you have a wonderful group of friends and family around you …. lean on them for support. Please know that my husband and I are praying for you and your sweet baby.
    We pray that you will somehow find peace and feel the arms of the Lord wrapped around you.
    Love,
    Camille

  7. friend

    April 13th, 2014 at 2:46 am

    My heart is shattered reading this. I need to share my thoughts on something. This condition does not come from heaven. Every GOOD thing comes from above. God cannot give disease because he has none. Her condition is the result of a fallen world that we temporarily calm our home.

    I don’t know why God allowed this to progress. I do know that he won’t let you fall. He will give you peace and wisdom in the coming days. He’s a God of miracles and healing. Continue to pray over her. Speak scripture over her. Declare LIFE over her and know that the power of life and death is in your tongue. Choose words carefully.

    I’m praying.

  8. Uncle Raymond

    April 14th, 2014 at 9:20 pm

    love and prayers….

  9. Mary

    April 14th, 2014 at 11:04 pm

    We are praying for you so hard! Every night we pray for AM, Rob and Reagan. For strength from God to see you through, I’m not even sure what to call it. My heart is broken hearing about the situation and what has happened, we will always be here to lean on!

    We love you all

  10. Carol Anne diodate

    April 14th, 2014 at 11:59 pm

    My sweet Anne-Marie, it’s been a long while since we’ve seen each other but I wanted to send you all the hugs and love to you, Rob & Regan!

    Just know that my family and I are praying and thinking of you during this most difficult time.

    Love always,
    Carol Anne

  11. Uncle Raymond

    April 15th, 2014 at 9:28 pm

    still praying….love, uncle raymond

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