Stupid, I know. I don’t know if it is because we were expecting a diagnosis of NPC, which would have been much worse for Hannah, or if it is because I’m relieved to finally have a diagnosis and now “know the enemy,” or if it just really hasn’t hit me yet, but I am feeling guilty for not being totally upset with this diagnosis. I mean, I’m being threatened with Hannah being taken away in a couple of decades plus (regardless of type 1 or type 3) developing painful physical symptoms. Shouldn’t I be crying more often? It has only been 4 or 5 days since we found out, yet I feel like something is wrong with me because I am just not crushed. I can’t explain it, I guess.
I am in such a “fight” mode right now. Fighting to learn all I can about Gaucher’s. Fighting to come up with a game plan to get Hannah the help she needs. Fighting and getting angry at some of these laws that we have that will limit Hannah’s right for everything she can achieve in the future. The more I learn, the more I realize I have even more to learn. It is almost totally consuming me, but we have much such a strong and conscious effort to step back and spend time as a family and to give all three of our kids fun and attention this weekend.
Everyone keeps telling me how much of a miracle it is that Hannah is here, especially after defying all the odds of our infertility (even with 4 failed IVFs). There has to be a purpose she is here. I’ve said it before, but I truly believe God wouldn’t bring her to me just to take her away and cause her pain and suffering. Maybe she is “the one” who is going to help find a cure for Gaucher’s disease or even a treatment for type 3 (if she indeed has type 3).
Maybe Hannah’s purpose here is to find the cure for Gaucher’s disease. Maybe she holds the answers? So many things are falling into place to make this happen — one of the foremost leaders of Gaucher’s research in the world just happens to move 3 hours from us AND is willing to take Hannah on as a patient? Finding one of the other foremost specialists in Gaucher research back east who has basically held my hand since we found out until we can see this new doctor PLUS willing to share this info with my doctors? I mean, how lucky can we be in that respect?
It is in her smile, her laugh, and her spirit. She does have a purpose for being here and being struck with this disease. She’s going to kick Gaucher’s ass! You watch.
I love your fighting spirit! Hannah is lucky little girl to have you as her champion. And I admit that things do seem to be falling into line with you for this. You’ll all continue to be in my prayers. God bless!
I suspect she’s going to kick more than Gaucher’s butt… And I don’t think you’re crazy not to be falling to peices with the diagnosis. It proves that YOUR purpose to be the mom she needs you to be. That, I’m certain of.
Don’t worry about what kind of reaction you think you should be having. You are reacting to the news in the way you need to react right now. There may come a time when you feel the need to cry, but obviously that is not the time. You took the news running and ready to go and that was exactly what you and Hannah needed. You should be proud of yourself and all the work you have already done.
Carrie,
Thanks for all of your support. Your blog today really hit home. Grey will be gone a month tommorrow. My husband and I keep asking ourselves why we are able to function. We just lost our baby and life keeps going on. I really think it’s because Grey was given to us so that we could make a difference. Who better to fight for newborn screening than a SpEd teacher and a pediatric nurse whose middle child has PKU and was treated and perfectly healthy due to newborn screening. I don’t know where to start, but I would sure like to work with you to figue it out. Hope to talk to you soon.
Nicole
http://www.greysgift.com
I don’t think your response is abnormal at all. Like you said you’re in fight mode and that’s fueling you… it’s also giving Hannah strength and letting her know everything will be alright. Continue to fight and know that we’re all praying and thinking about you.
I don’ t think there is a right or wrong. I think you are a fighter and have a great spirit. Keep fighting and keep strong.
I think there is a lot of truth to the “fight or flight” phenomenon that we hear about. You’re in fight mode right now, fighting for your daughter to get through this. There are no rules for how you’re supposed to feel right now as everyone reacts differently.
My heart goes out to for all you’re going through. Your daughter is so very blessed to have you for her mother. She most definitely is a gift from God.
Life is so precious, and you have been given the gift of time–of course there has to been a sense of relief in finally learning Hannah’s diagnosis and knowing that you will have time to fight. We have to take life day-by-day, and it seems to me that you shouldn’t feel guilty, rather funnel your energies into what counts most. And I don’t believe that the coincidences you describe are just that–I believe you’ve been blessed–You and your beautiful family will remain in our prayers!
Just knowing what the enemy is and how it works is half of the battle. Don’t worry what your reaction is–who cares? It’s great that you are in fighting mode and that you are doing so much. Who knows what tomorrow brings for any of us–at least you know to take each day for itself and to love each other immensely in each moment. Peace……..
There is no reason for you to feel guilty or depressed. Although a weighty battle, you have learned that she is not leaving you in the near future…a time to rejoice for a mother who thought her little angel might be terminally ill and not make it out of infancy. Of all the news you’ve been getting recently, learning that your daughter will make it for the next 10 to 20 years is more hope than you’ve been given in some time. I think you are right on, to enjoy what you have right now, to embrace your kids and prepare for your fight against Gaucher’s.