Isabella Grace-ious

Isabella Grace
The story of the girl who changes my life

Thursday, April 7, 2011

Beauty in the Midst of Struggles

Riding the waves of anxiety again. I hate not knowing what the future holds. I've been trying so hard to make connections with other parents out there who are living through similar journeys, and I'm finding that the more I read about what they are going through, the more I fear that not knowing what is "wrong" with Isabella might lead to something really really terrible down the road.

My biggest fear in life is Mitochondrial Disease.

And, as Isabella is on the autism spectrum (PDD), I have been doing a lot of research on how Autism and Mitochondrial Diseases might go hand in hand. I was hoping there would be no connection. I was way wrong.

Turns out, up to 10% (maybe MORE!) of people living with Autism (anywhere on the spectrum, from very mild, PDD, to full blown Autism) are also suffering from a mitochondrial disease. Autism can act much like a is a sign that something else is amiss in your DNA or body functioning, not always a solo diagnosis, but more like a symptom of something bigger. I know of so many different disorders in DNA that are accompanied by autism-like behaviors. Kabuki is one. I hate that mitochondrial disorders are one of them too.

So I am scared again. I worry that Isabella is eating too frequently, and not gaining weight as fast as she used to. I worry about that elevated lactic acid in her blood. I worry about the random rashes that pop out of nowhere on her face. I worry that her muscle strength and tone are SO low. I worry that she might have something horribly progressive after all.

She is scheduled to go back to her Neurologist at the Cleveland Clinic in the beginning of June. He's the one who specializes in Metabolic and Mitochondrial Diseases. I have SO many questions for him, but I know that diagnosing these diseases aren't easy. They usually require more blood work, sedated MRIs, and muscle biopsies. All scary things. All things that require waiting for answers. I don't know how I will handle it.

I know I drive myself crazy with this anxiety. I don't know how to stop, though. I often feel SO alone in this struggle, because I am afraid to talk about it to many people. Talking about it makes it more real. And when I try to talk about it to Nik, he just doesn't understand. Don't get me wrong. That man is one of THE most WONDERFUL things to ever happen to this Earth. If he wasn't my husband, I'd be jealous of whoever snagged him. But he tries not to worry about things until someone (usually of authority) tells him to "start worrying" and he's used to me worrying about things way before it's time. I really think that half the time I talk to him about my worries about this, he is trying to tune me out because he doesn't usually say much on the subject. Honestly though, I am glad. I definitely couldn't handle someone like me. I know he worries, but he tries to focus on the now, which I honestly wish I could do more of. I also think he transfers his worries about Isabella's health to more day to day struggles of her future, such as where she will go to school, and how she will fit in with her peers, where as I am more concerned with her future health.  I'm one to get as close as I can to the fire so I will be prepared to burn if I have to. Nik is one to walk away from it until he absolutely has no other choice but to face the flames.

I often ebb and flow between strength and survival. There are some days when I feel so powerful and strong, and I know that I will be able to stand up again after life's blows. But there are days when I don't even fight the blows and I just try to survive. I am not strong right now. But I am surviving.

There lies the problem. I don't want to spend my life just surviving. I want to see the joy in every minute, instead of worrying about how I will find good times in the wake of crisis. I don't want to be obsessed with sickness and disease. I don't want to research medicines to delay the progression of energy loss. I don't want to know all of the medical terms that haunt me in my dreams. I just want to enjoy my kids.

I am working on letting go in order to find a place of peace. But it is so hard.

HOWEVER, the past few weeks have brought a lot of good. I have known for a long time that I need to direct my energies on something more positive, so my amazing, wonderful, brilliant friend Jen and I have started up a network for parents and families of special needs children. We have called it Special Loves Network, and our first parent's night is April 27th. I am so excited about this, because it has been my hope for a long time that someone would invite me into something like this, and when it never happened I decided it was high time something like this got started in our area. Jen and I attended a session last spring called "Seasons Of The Heart". It was one of the most wonderful experiences for us because we were able to see that we were not alone, that we weren't crazy, that we have love and support from other families who we don't even know, and that there are resources out there to help us. We didn't want the class to end. So we decided to continue it in our own way by starting this group. We started a blog for it if anyone is interested ( but be warned that we are in the VERY early stages of development. That being said, however, I am SO encouraged by the interest it has already generated in our community, and by the amount of people who would like to be involved and have offered to help. We plan on having parent support nights, play dates, and sibling support, as well as a host of resources such as upcoming events for the special needs community, helpful online web pages, and even (someday) fundraising for genetic research and causes. I hope it flies, and that people get as much out of it as I hope to!

Jen and I also attended a conference this past weekend for parents and educators of special needs children in Massilon. It was WONDERFUL! The classes on sensory integration disorders and social competence were entirely applicable to what we are experiencing with Isabella, and I learned so much. It really fueled my desire to get the ball rolling on the Special Loves Network.

It's amazing how beauty can be found and connections can be made in the midst of unexpected struggles.

So speaking of beauty, how bout this week in pictures?

Noah has discovered his softer side. He is totally in love with this baby, he even gives it a bottle and changes its diapers. So sweet.

"Mommy! Come see what I did!!!"

She was NOT happy when I informed her that we are not supposed to color on the walls.

Such a little love. She ran and got her eraser, and then proudly announced "I'll help you clean it mom. I'm the BEST helper!"

So proud!

Not sure how she managed to snag the Student of the WEEK award on a Monday, but we'll take it!!

PS....In case you haven't heard, it's Autism Awareness Month. Learn more, support more, and love more!

1 comment:

  1. So many things I would like to say!

    1. I so, so understand your worry. Mito is one of the reasons I don't sleep at night. I'm so scared my Bella has something progressive also. The fear and anxiety consume me-and like you, I don't want to live like this. UGH.

    2. Your husband and mine must be related. Craig sleeps just fine at night. I'm glad he's so calm and acts like he's not worried, but sometimes I just want to shake him! glad though-we balance each other out.

    3. I cannot thank you enough for starting this network. I have wished and hoped for something like this. Thank you, thank you. (I got your email BTW).

    So much more I could say, but I'll spare you! :) Thanks for sharing and being real. I can so relate to what you are feeling.