I know that many of you don’t know how to respond to our news, which is probably why we haven’t heard from quite a few of you since we finally did get a diagnosis.
Yes, we received heartbreaking news regarding Hannah. Yes, our lives have now been totally turned upside down with this diagnosis. We have gone from a boring stable family to a family that has to consult with a lawyer in order not to possibly lose our house and assets because of the cost of her medical treatments and now trying to figure out how we will ever save for the kids’ colleges. We have gone from a family who can do things “on the whim” to a family who has to schedule their lives and activities around Hannah’s treatments and doctor’s appointments. We have gone from reading the latest in People Magazine to reading the latest on drug research and clinical trials.
But you know what? We have a lot of hope. We are given a difficult circumstance that none of us has experienced. We have hope that it is type 1, and we will deal with whatever physical symptoms and medical treatments she will need. If she does have type 3, then we will do whatever we can, talk to whoever we can, and pound on every door we can to find a treatment and cure…we have 15 to 20 years, a lot can happen in that time.
Hannah has brought an amazing amount of joy into our lives. I never knew what was missing, but it was her. The way she smiles and laughs, the way she just charms everyone she meets, and the way she gets a huge grin every time her brother and sister come near her. We will fight for her, as a family.
You may feel that saying “I’m sorry” may not be enough or just not know what to say. The only thing I need from you is to know that you are still here for us. Just a simple “I’m here for you” or “I’ll be here if you need me” will give us the strength to fight, as it means you are fighting with us in spirit.
We do love you, and we know you care about us. Don’t worry about “what to say” to us. Just say whatever you feel — even if it is just to talk about what is going in the world, your lives, or whatever.
Carrie,
I was just wondering if it would be ok to name hannah on Aaliyah’s carepage and to mention this website? If you haven’t checked her carepage out yet, maybe you want to first? Everything you mention for the most part in your email and on this site remind me so much of what we went through. We were denied ssi too….at first! Give me a call anytime ( i stay up very late and I get up very early fyi) anyway, wishing you guys the best and your in our prayers:)
Liz
Carepages.com
(babyaaliyah)
caringbridge.com/visit/aaliyahheinzelman
You know you’re continually in my thoughts and prayers! 🙂
What a tremendously hard time for you and your family–We will keep you in our prayers… I will be putting your updated button on my blog, too… Hope and faith are truly miracle workers!
I think about you guys daily. You are always in my thoughts and prayers, and I know you have a fight ahead of you, and Charli and I are prepared to do whatever we have to do help you in your fight and go with you on this journey. You are an amazing mother, and you have an amazingly strong little girl. And things will get done. We will see to it. Whatever you need, whenever you need it, even if it’s just to vent, scream, cry, brainstorm for fundraising etc. You let me know. Our birth buddies will be friends for life. And they are both going to have a full happy life. And more love than they could know what to do with.
We love you. We are ALWAYS here for you.
I feel the need to say:
In the midst of your nightmare, be sure to take care of yourself. It is so hard to do that when your child is sick, but it is necessary.
Take pictures every single day.
Don’t be afraid to speak up and protect your child from rude and obnoxious strangers who may be way too nosy. People can be very difficult to deal with when you have a sick child.
Ask for help when you need it.
Also, miracles happen all the time. I will pray for you and your family.
I will join with you in prayer c: even if we don’t know each other c: I shall join Hope For Hannah c: God bless her more with healing Amen c:
People most times don’t know what to say, and I’m glad that you are giving us tips on how to approach you (and others) and the situation. I am forever saying the “wrong thing” and so I tend to just be quiet–not helpful, I know.
It’s difficult when going through something how people back away. That happened to me when my husband and I separated. I have essentially been left in his home state without a support system and all of my old “friends” are gone. Those who continue to stay in your life are those that are meant to be there. Sometimes people are with us for different reasons. You know I think of you guys everyday and you can email me anytime… I have much hope for Hannah so, like you said, know that some of us are with you in spirit: supporting you, praying for you, hoping for you and thinking about you. Have a great weekend.
I hope things start going smoother for your family.
Don’t worry about not being able to pay for college- tons of us have done it without tuition help from our families and still got a degree!
I hope you guys get some relief soon.
Hello Darling, this was the first time I happened on your blog and I wish I would have found it sooner. I hope you don’t mind, but I grabbed your button and put it on 3 of my Blogs. I hope it will bring you love and encouragement from a few more people.
Sending you a big warm hug and all the love I can. Hang in there and give extra kisses for me to little Hannah
I just wanted to pass along a big hug and lots of prayers for little Hannah. Just take things a day at a time. The medical insurance, college, etc will all work out when it has to. My husband became very ill about 4 years ago and was originally given about 3 years to live. We went through a very devastating time; emotionally and financially since he ended up having to leave his job and lost his medical insurance in the middle of all of this. We took an 80% pay cut and it has been a crazy ride since, but he’s still with us. We went from the family that could go on lavish vacations and buy anything we wanted, to a family that is just getting by. But that’s OK. Each day is an amazing gift!
Just saying hi to tell you that I follow this website almost daily. Therefore, you and your family are in my daily thoughts.
And yes, you are a good writer. Maybe try to organize your posts about the pharma and insurance system into short articles in order to develop a portfolio. Keep it up!
Big Cousin M