I seem to be using the word “sucks” a lot today. Because this situation just sucks.
I keep looking at Hannah, and I realize that I may never get the chance to get to know who she would have become. It just gets me more upset. As a mom, you think of your child’s future. Hannah may never get to have a future that is hers. I mean, if what Dr. E. says is true, Hannah’s life is going to be “special” with tons of therapies, medical treatments, pain, and neurological degradation. She may forget who we are, forget how much we love her, forget what makes her happy.
I just don’t understand how this happened or even why this happened! This is so f___ing unfair!!
I know I took it out on Little Girl A and Big Boy E a bit tonight. I’m so sorry for that. I’m just so angry and on edge, and they do what normal kids do (push their mother’s buttons), and I just couldn’t deal with them and got angry at them. Misguided, I know now. I usually can contain it, but today I just was so not in the mood for the BS tonight. Tomorrow is a new day…
I feel this overwhelming sense of urgency now to do something. Raise money for research. Get Hannah’s story out there even more. Try to get our family life more “normal” for Big Boy E and Little Girl A. I’m so determined to save Hannah’s life, but then I keep thinking “doesn’t every parent feel this way and yet they still lose their child?”
I don’t want to lose Hannah. I don’t want her to forget how much I love her, and I don’t want her to forget how much she loves when I cuddle her and strokes her face. Why does a disease have to take away her mind as well as her body?!?
This just sucks.
I’m agree, it’s not fair…no child should have to endure that. All you can do is pray. And remember, the Lord would never give us anything we can’t handle! You are all in my thoughts and prayers!
This is my first visit to your site and the first I have read your story. Thank you so much for sharing it. I really believe that telling our stories gives us strength and makes our experiences soar beyond our imagining. That may sound hokey when you’re just dealing with the day to day struggles of life and kids and doctors. But I am thinking of you and your family and wishing you strength and peace and much much joy with your sweet baby girl.
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You’re right Carrie, It isn’t fair. It simply isn’t right, fair or just, and it does f-ing suck. Hannah was dealt one shitty hand of cards to play and she did nothing to deserve it. Love her, squeeze her, and fight for her where you can.
You and your beautiful family are in my thoughts and prayers. I could not imagine what you go through on a daily basis. My son Cedric has Angelman Syndrome and while that is tough it is nowhere where you and yours are at. It may be weird but reading your blog helps to keep my thoughts in perspective with my own life. So thank you for sharing and thank you for the level at which you share. I completely second melissa’s comment… Love he, squeeze her & fight for her where you can. My love to you and your gorgeous family.
It does suck. And there are no words to describe the unfairness of the whole thing. Hold strong. Your family is in my thoughts and prayers everyday.
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Saying this sucks is putting it lightly. I am sorry Carrie. We’re thinking of you all. I hope to bring Madden and Myles to see you all soon.
My heart is bleeding for you. I can’t even begin to imagine what you must be going through.
Cut yourself a little slack. None of my kids are sick – so I have no excuse! – and I lose my temper regularly. They are just being kids and you are just being a mom. Don’t beat yourself up so much!
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Carrie Hannah will not forget who you are or how much you love her. She will still smile at you and make her sounds and talk. Gauchers does not take away her mind it may just effect certain body parts. Avery was Type 2 and my sweet boy smiled and was very happy the whole time. This is a very bad disease and right now there is no cure but remember you do not have to let it take you to a unhappy place. Stay positive and enjoy what time you do have and beat it. You can do it, you have to do it for your other children. God put you in this for a reason you just need to have faith and know that he knows what he is doing and he will pull your family through this. Spend every moment with her loving her and telling her how much you love her. Take alot of pictures with all of you. Let me know if I can help. I am deepley sorry that you have to go through this, but you are not alone.:) Alesa Plummer
Even Jesus wept and got discouraged- the Psalms are full of proof that God wants us to turn to him, even when things suck! You are in my prayers and I am so sorry you and your family have to go through this!
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I can’t imagine what your’e going through!I’m so sorry!! It isn’t fair…you’re right….and that’s probably what makes it so hard to cope!! I will keep your beautiful daughter in my prayers…..never give up!!! And don’t feel bad for gettin upset at your older kids, with what you’re going through, that’s going to happen now and then. Please feel free to let me know if there is anything I can post on my blog anytime to help you spread the word!!!
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