I don’t know what is wrong with me. I’m feeling very defeated and am worried tremendously about Hannah, specifically losing her. I have no idea what set it off either.
Today was a positive day. Had a great, great conversation with two of the directors of the National Gaucher Foundation PLUS finding out they gave us a full-page share in their quarterly newsletter (click here, page 17). Made some wonderful connections in the Tay-Sachs community. Got a positive response from someone I was hoping, hoping would be able to help me understand what research is going on even though she is incredibly busy. Found a couple GD2 and GD3 parents who are very willing to get more involved and “fight” with me. Gosh, even more positive responses to emails I have sent out…many people willing to share their expertise to help me understand.
I just got this overwhelming feeling today that it may not be enough. That no matter what I do, I’m not going to be able to save her, and I am going to lose her. I haven’t felt like this in a long time, but I just feel like everything that is out there is just not going to be ready in time for Hannah. That the treatment or cure will come after it is too late for us, for our family, for our little girl. That because of our personal financial crisis as well as this so-called “recession,” there won’t be enough money to give Hannah everything she needs to keep fighting (especially if we have to come up with out-of-pocket money for additional therapy services) or money to give researchers who are working specifically on GD2 and GD3 research and treatments.
I watched Chuck tonight, and there was a scene where Chuck’s sister was getting married and being walked down the aisle with Chuck and their dad. All I could think about was Hannah possibly never getting a chance to get married and have Daddy walk her down the aisle. Would she even be here for her sister’s wedding or her brother’s?
I watched that episode with Hannah cradled in my arms, asleep. I just kept stroking her hair, giving her kisses on the top of her head. I kept telling her that I love her. I gave myself until the end of the episode before putting her into her bed. I don’t know what came over me today (through tonight), but I don’t want to let her go.
Tomorrow we have her NeuroOpthalmology appointment to see how much damage her Gaucher’s Disease has actually done to her eyes. Another reality check. Finding out the damage that will never be able to be repaired. Finding out her limitations as of today and understand what limitations she may have in the future.
I don’t want to ask “Why Hannah?” I don’t want to hear that “God has a plan.” I just wish that she could just be a normal baby girl, and we could live a normal life.
***HUG***
For what it’s worth, even though we’ve never met, we love you and Hannah.
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My tears are edging. Any parent’s thought of losing a child is heart-wrenching; usually there’s time and circumstance that you hope is a long way off. In your case, in Hannah’s case, you don’t know that. Truly, I can’t imagine your pain, I won’t pretend to.
All I can tell you is that you can’t stroke her hair enough, kiss her enough, tell her you love her enough. Do it whenever you can. And know, that she knows you love her.
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A big hug from me. I pray that your appointment goes well.
I know how you feel Carrie, it happens to me too. That’s why we’ve made the incredibly difficult decision to have a bone marrow/cord blood transplant. In Kyle’s case, it’s the only real shot we have available to us now to give him a normal, healthly life. It’s hard because we just don’t know if they’ll find a cure in time to save our babies no matter how much we fight. All we can do is work with what’s available right now.
It is very risky and I’m scared to death, but I’m focusing on the 80% chance they are giving us that it will be a success. I’m focusing on the fact that a little girl at the same hospital that Kyle will be at beat Gaucher type 3 with a transplant – now she’s 18 years old, living a normal life. That could end up being Kyle 🙂
I also heard from a family member that they seen on TV that the states is saying that a baby who has a transplant under the age of 1 year, has 0% risk of transplant failure. I asked the doctor in Toronto about that, and he said it’s probably because a baby’s immune system isn’t fully developed.
Like you, not a day goes by that I wonder why this had to happen to us. In our case, we have 2 other perfectly healthy children, so why Kyle, why did he have to get the disease? You just wish with all your heart that you could be just a normal family with 3 kids. When we’re out and about and I see parents with 3 small kids, I think how lucky they are that all their children are perfectly healthy. How lucky they are that they’re not carriers of a mutated gene that’s taking the life of their child.
I’ll keep Hannah in my prayers 🙂
Melissa
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*HUGS*
Keeping you all in my prayers!
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Carrie, {{{HUGS}}} to you. I worry about my kids with no real reason other than normal mom worries. I can’t imagine carrying the emotional burden of really not knowing what will happen with Hannah. Y’all are always in my thoughts and prayers.
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I am sending you a prayer and a hug…I know that nothing can be said to make you feel any better but there are a few things I would like to share– We are all brought into life with some type of death sentence but for most of us it is unknown. A good friend and co-worker died last week of a heart attack and she was 44…we were all in total shock.
I have a Down’s Syndrome sister—she was also born with serious heart problems. We were told that we would be extremely lucky if she made it to her 15th birthday…In August we will celebrate her 40th birthday 🙂 So…I know the astounding love a mother has for her child and when that child is sick all the worry a mom goes through….but we just never know what the future holds. Hannah may be around a lot longer than any of the rest of us—hopefully 🙂