There, I said it. I’m not really the pity-party type of person, but today it just all seemed to hit me. I think the combination of seeing how hard Hannah works in the therapy videos I uploaded last night to Facebook plus seeing her chest retractions when she really gets upset and worked up or maybe it was making the mistake of looking at a “where your child should be at 12 months” development checklist.
THIS IS NOT FAIR!!!
I was playing with Hannah in the living room, as we usually do, and she did something new today. She kept reaching out to hug me.
That’s when I lost it. I just started to cry. This disease is still creeping up in her brain and is causing more problems. This is really happening.
I just stared at her, and for the first time ever, I told her to fight it. I told her not to give up. I told her that I would do whatever I can do to help her.
But I feel like I am failing in that department. I mean, reality check here, what are the odds that I can pull this off? Who am I to think that I really am going to find something to save her life? I feel like I have gotten so little accomplished and have made barely a dent.
It hasn’t helped that I have received very little help or even support from the people who really could help. I can’t do this alone. I have so many wonderful friends who have offered help, but the type of help I need is so intensive and so involved. I think that is one of the most depressing parts of this whole situation.
This Cerezyme fiasco hasn’t helped matters. Even though Hannah is not going to miss a treatment due to it, it really has thrown a curve ball in my plans. The National Gaucher Foundation and Genzyme have been so incredibly wonderful, supportive, and proactive with me, and we were just at the beginning stages of seeing how we could all work together. But now that has to be pushed back a few months until this chaos has normalized (understandably so, that is their priority, not Hannah – so I have no ill will towards them for that).
Don’t know why this has me more depressed today, but a researcher out of the country is working on a possible treatment to help slow down Hannah’s form of the disease. He agreed to test Hannah’s fibroblast cells to see how they would react with what he is working on. He warned me up front that the research data on Hannah’s genetic mutations make this not very likely at all to work for her. But then, this morning, I got an email saying that he would likely know by the end of the month now that he has the cells. I guess I felt like there was hope with this, but now reality is telling me that I’m just waiting for the big “doesn’t work, sorry.” Then what?
Lastly, money. I need to raise money. I need to raise a lot of money. It is going to take money to even attempt to save Hannah…there is no money out there. This could not have happened at a worse time in our economy. Not to mention that we are running out of money personally, and I just don’t know what the heck we are going to do. Money sucks.
I don’t want to lose Hannah. When I step back and look at her, I realize more and more that there is progression in her disease.
I don’t know what to do.
You are an amazing mom with an absolutely beautiful baby.
You are doing so much. You are reaching in so many directions and making sure so many people know who Hannah is. One day someone is going to come across something helpful and think of Hannah because you have put it out there to them. I once had a boss tell me “it’s not what you know but who you know”. In a way, I think that applies here. That being said, you are entitled to days of being down.{{hugs}}
You are 100% right. It’s just not fair. You’re doing your best and it’s all you can do. This sucks, and you have every right throw whatever kind of stinkin’ ‘pity’ party you want to.
Hugs and kisses Carrie. You’re definitely entitled to feeling that way and it’s absolutely and completely warranted and normal. You are doing a fantastic job because you are doing everything you can. You are doing what every good mother does and that’s fight for their child! I think you’re right about it being the “wrong” time because of the economy, but there’s a reason and a plan behind this so that makes it the “right” time. I believe that someone, some organization, some something will come through. … I don’t want you to lose Hannah either, but you’ll do what you’ve been doing (like the old saying goes), “You’ll keep on keeping on!”
.-= Petula´s last blog ..Social security disability law =-.
I know exactly how you feel Carrie!
It just sneaks up on you and you feel so helpless. I tell Kyle every day that he is going to beat this disease, he has so much to do here, so he can’t leave any time soon.
Some days, it hits you like a ton of bricks, when you let yourself think about losing your baby. Because no matter what we do, if a treatment or cure isn’t found, our children our going to die. It just seems impossible, when life is so normal, that one day Kyle isn’t going to be here because of something so stupid like this.
We certainly have the option of a bone marrow or cord blood transplant, but all I can think, is that we’ll just end up losing him sooner.
I get so angry sometimes, because it’s just so damn unfair. I mean the other day when we took our kids to the park, a grandfather lifted up the swing thingy so I could put Kyle in, and when he asked how old he is, I didn’t answer. Instead, I just thanked him for help. Otherwise, telling him that Kyle is a year old, just raises eyebrows and questions that I don’t want to answer.
The other day when I was speaking to one of the ladies involved in Kyle’s care, and I was asking how the hell this got to his brain in the first place, and why it doesn’t go there with people with Type 1.
Of course, she said they just don’t know. So I said, well can’t they just inject the treatment right into the brain. She said, actually that is something that is being worked on right now. They are testing injecting it into the spinal cord in the hopes that it will get to the brain that way. She said it’s not in human trials yet, but it’s in the works.
But again, nothing seems to be happening fast enough and it sucks 🙁
.-= Melissa Ingold´s last blog ..Quick Update: Assessment For OT and PT =-.
The other mother resource I suggest is Tammy of Tammy&Parker at 5m4sn.
.-= Barbara´s last blog ..S-t-r-e-t-c-h! =-.