Hannah's first attempt at peas and pasta wheels - at least she tried it!
It has been a rough couple of months. I still feel like we aren’t anywhere close to being settled in this new “special needs parenting” life. I guess it is a process, a journey, and not a quick sprint to a destination.
Along the way, I have seen the “real” in people in my life. I look at people like my brother-in-law and sister-in-law and am just so blessed to have them fight so hard for us and for our family since day one and on so many levels. There are people in my life that I just expected would be here fighting with us, helping us, but they have all but disappeared. It makes me mad, sad, and just totally confused.
But I can’t change what I can’t control. It all goes back to “it is what it is.”
My life is just so not what I expected it to be. I can’t say that I have regrets because Hannah is just so damn worth every trial, worry, and change. But I do wish that things could be easier or just even more calm and in order.
It is one thing to raise a chronically-ill child, I think. You know what you are dealing with, and you have to learn to accept it and find a way to live your life that certain way. When you are raising a child with a disease like Neuronopathic Gaucher’s disease, especially a variant like Hannah’s that is a “puzzle” to the doctors, you just don’t know which way is up some times. Having a disease that you know is going to take her away from us at some point just, well, you never feel like you settle into a way of life.
I’m having a hard time dealing with things lately, this lack of order and sense. I’ve been trying to find a job that will give me the flexibility to be able to take care of Hannah during the day as well as the other kids when they get home from school. I’m hoping that my old MT company will bring me on part-time, but if they do, my weekends and evenings are gone. But what choice do I have?
It has been really slow going getting Hannah on to the medically dependant children’s program (MDCP) here in Texas. We are now in the waiting stages to plan our 24-hour stay at a nursing home, but we are waiting on our case manager to get the paperwork in order. We have already been approved for the program. Once we complete our stay, Hannah is eligible for Medicaid (instead of waiting 6+ years) as well as getting money for respite care.
The respite care has been something that I have started to look into as well. We know how much money Hannah has qualified for, and I feel very fortunate that it will be able to provide us at least 20+ hours a week of care. We need to use at least 80% of it or we lose it (I don’t know the exact number). Hannah is so dang attached to me these days that it is going to be a gradual process, a very slowgoing one at that. I’m hoping to find someone like an occupational therapist or special needs preschool type teacher to provide respite. Hannah needs a lot of time spent with her working on simple task because it can take doing something very simple over a hundred repetitions before she picks it up. I like the fact we can choose who our respite caretaker is going to be!
Hannah also starts hydrotherapy tomorrow. I know how wonderful it will be for her, but I just have a bad feeling in my gut that she is just not going to want to do it. Even though she loves bath time, I also know that she seems to cry quite a bit because it is with her current OT, and she refuses to go to her without crying hysterically. Granted, Hannah cries hysterically when she goes to anyone else but me or Daddy. Well, she will go to Jenny, her developmental therapist, but that has been a 11-month once-a-week relationship that has been built.
We have her 12-month ECI evaluation next week. I’m kind of dreading it because I know that Hannah’s development in the five primary early intervention areas has dropped off quite a bit in the past four to six months. She is falling farther and farther behind, and it is just so hard to see that chart. It is just a slap-in-the-face reality check of this disease.
Even with as well as Hannah is doing with her medically being “stable” in terms of her symptoms, her brain is still being destroyed slowly – cognitively, behaviorly, and developmentally. She is trying so damn hard, but every single breath and movement is such a chore for her because of the brain disease and her hypotonia. It shouldn’t have to be this way. She doesn’t deserve this.
But gosh, if you could see the smile on her face. OMG, she smiles so much and is so happy. She has no idea what is going on with her. All she wants is me. Pure love, right there. With all the delays and physical issues, her smile and the thrill in her face when she sees me – it is truly priceless. I wish everyone could be enveloped by this smile — she could change the world with her sweet grin.
Talk about a rambling post. My brain is much like this post. Rambling, trying to figure out where I am at, wishing that my life could be more in order instead of just living for that moment and getting through to the end of the day. I know there are other special needs families that seem to have their lives under control, even with all the medical-related issues. Why can’t I seem to get it together?
I think you don’t give yourself (and Robert) enough credit. You’ve done an amazing job at keeping your home and family running even with all of Hannah’s appointments. You’re actively pursuing a job on top of that. You are superwoman in my book! Just wished you lived in Ohio so that we could give you some down time.
As for respite care…. Hannah will adapt. I promise. 🙂
you are superwoman. you do more than any working mother does. I honestly don’t think I could do what you do…
***HUG***
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Respite care: when I was a college student, I was a respite care provider for a family. I was an occupational therapy student at the time. If you can’t find an OT/PT/ST as a respite provider, you might try to find a college student in one of those areas. People would just come to our department at school and ask if any of us were interested. For the most part it worked well.
My first child was very clingy. Mommy and just the mommy would do. No daddy, no grandma, just the mommy. (Well and most of the time mommy’s sister would due.) He did get past this, gradually. He still is a mama’s boy.
Sometimes I think “other people’s families” look more organized/running smoothly exc because you do not see the gorey details. I’m guessing others think the same of your family.
I think you are doing a great job.
I agree with Mel. And you guys are always in my prayers.
You are a great mom! My family is always praying for Hannah and your family!
Oh my God Carrie NO ONE has got it more together than YOU and dont you forget that!!! You are such a good mom, so strong and more together than you will ever know!!
The GRASS IS NOT ALWAYS GREENER ON THE OTHER SIDE!! You are doing such a great job and your knowledge and wisdom and insight to all of Hannahs treatment is just outstanding. You sound like a DOCTOR when I read your updates!!
Dont lose HOPE Carrie, keep up the fight and we are all praying for all of you everyday!
You do have it together. That’s what you have to realize and give yourself way more credit than you do. You’re doing an absolutely fantastic amazing job. It may not be the way you envision or go exactly as planned, but you handle so much that it’s amazing. I don’t see how you get done what you do. If, at the end of the day, there are still things on your to-do list it’s okay.
I hope that you get the respite care that you need and Hannah adjust quickly. She’s so beautiful. I love that picture … her expression is so cute.
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Agreeing with Maureen.
I’m wondering if you can ‘opt out’ of having the ECI crew come in and tell you all the things you already know? If you choose, can’t you just tell the case manager, drop the report by, I’ll read it when I feel ready and then call if I have questions – ?
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