Hero

Have you ever met a hero?

They dress in entirely too tight clothing, sport a strong catchy name and sweep in to save helpless people. They're strong, not frail. They most certainly don't come in 48" 38lb packages with bouncing curls.

So how is it that this sweet little girl rescues me almost every day? Can a 4yr old be my hero?

The SHIELD she wears on the outside doesn't allow the world to see her brokenness on the inside. She looks tough and mighty, her veins are ridden with scar tissue but her adorable dress distracts you from seeing them. Her left eye and face is becoming more paralyzed but her precious smile covers it up. She has a SUPER CHARGED POWER PORT in her stomach that allows her to add a boost of extra power and nutrients while she's out saving the world. She's fueled with SUPERNATURAL STRENGTH that makes it impossible to keep her down. When she's supposed to be conserving her energy and preserving the health of her cells in her body, she chooses to pull of BMX Bike Stunts on her training-wheel-less bike, instead. Her PERSERVERANCE is stronger than the world expectations of her. She unexplainably defies the odds time and time again.

Have you ever met a hero? Because I think I made mine.. Annabelle is, without a doubt, my hero. She's the hero that I can't live my life without. She's the hero our community needs to remain humble.

This strong little girl wasn't supposed to make it to school age. Doctors asked us why we are even signing her up for school.. but, to our amazement, she continues to fight and graduated preschool last week. Friday she was registered for kindergarten. Annabelles nurse cried during the entire graduation ceremony, in pure love and admiration for how far she has come.. Annabelle and her nurse have a bond unlike anything I've ever seen. A more special and unique bond than I can even have with Annabelle, the two of them know one another and trust one another in such a way it's amazing.

This school year wasn't easy. Annabelle struggled most days to make it just 3hours in school, and although she still writes her name completely backwards and counts 11, 13, 18, 22, 23, 24.. She's still overcome more than her doctors and medical team ever gave her credit for. I am so proud of this little girl. A preschool graduation may be the only graduation she has, so it was very very special to us as a family to watch her so proud of herself. It was truly a hard, but wonderful evening :)

We met our principal, school nurse and kindergarten teacher last week during orientation. We also scheduled a Child Study for next Monday where we will meet with the school team, our nurse and AK & I to determine which accommodations we will need to make and have in place when she starts school in the fall. We haven't decided if we'll need an IEP, 504 or both.. I'm just now learning this acedemic / public school lingo and have a LOT more to learn.. Hopefully I get a good handle on it all next week.

Wheely-Chair Update

It's been 7weeks since we've met with OT at the Wheelchair Clinic in Cincinnati. Based on how Annabelle's overall health is going, I think we'll need to return to Cincinnati a bit sooner than we expected, preferably in August. It would be ideal to be able to pickup our wheelchair while there so I called for an update.. They broke the news that Medicaid will not participate or cover any costs for the wheelchair. We half expected this, but prayed regardless for the help. I was sent a form to sign that I acknowledge Medicaid will not be billed for the wheelchair and we will assume the remainder of any costs. I had the option to retract our order of the wheelchair and cancel it or continue and pray like high hell our other insurance will help at least some. Of course I choose to continue, but I would be lying if I said I didn't want to get sick when I saw the total cost and then cried.... The grand total for Annabelle's wheelchair, (no power, 100% manual chair), is: $7,938.91. Im not sure about the rest of you, but we most certainly do not have that money.  

Here's a quick rundown of the items on our invoice. Mind you, when you purchase a wheelchair, that's all you get, just the frame of a chair. Anything more than the frame itselt is a custom upgrade. Yes, so as you read this list, allow your eyeballs to burst out of your head and roll just like mine do at how ridiculous it is we have to UPGRADE her chair to get just the BASIC ESSENTIAL pieces that should come standard in the first place.

Wheelchair: $3,409

Footplate: $202

Spinergy Wheels: $1,061

Side Guard (to protect her hips/clothes from getting caught between the seat and the wheels): $197

Armrests: $224

Padded Calf Straps: 101

Swivel Anti-Tip Rear Wheel: $256

Posterior Back (seat back): $755

Transport Bracket: $264

Headrest Pad: $265

Seat Cushion: $432

Seat Belt: $114

Trunk Support: $99

IV Pole: $331

I don't know why the invoice left me in tears so hard, perhaps out of sheer frustration that we don't have the means to provide everything our daughter needs to keep her happy, semi-healthy and living life to the fullest - or if I was just so damn frustrated with the medical world that they rob families like ours and children like Annabelle from the necessities they NEED to survive. It's a sad, broken, corrupt medical world ... one I despise and hate being forced to live in ...

I signed the paper and faxed it back. Our chair is being ordered now and our fingers are crossed that it should arrive by August. We are hopeful that it will and we can make good use of our time while there (as we always try to do). Annabelle's body is failing fast and hard during this most recent relapse. She complains of pain a LOT, both while eating and during regular activities because her stomach is hurting so badly. She cries out in pain and is asking more and more often why she is sick and why God made her body with so many boo-boo's. She's getting older and explaining things to her is actually becoming more difficult. She doesn't settle with a simple answer any longer, she asks multiple follow-up questions and always looks for an optimistic fairy tale ending, "So when we go to Cincinnati NEXT time, they will fix the boo-boo and then I will be able to have pizza like my friends and I won't be sick anymore?" .... "no sweety....." :(

We are staying very close in touch to the team in Ohio and if things were to turn for the worse while we are here, it's understood that we will fly immediately that way where she can get the best care. For now, we are just allowing her to live life to the fullest and caring for her the best we know how.

She is our hero. Every single day she finds the energy to get out of her bed when her weakening body pleads for her to lie down. Every single day she finds a way to make our family laugh and remind us how blessed and grateful we are to have all that we do. On the worst day, a frustrating work day or traffic jam that causes everyone to run late, we struggle to give into the negativity.. life is all too short and too precious to allow anything other than joy and laughter fill our homes. Next time you're struggling, I challenge you to give a stranger a compliment, turn up the radio and sing... or if you're me, think about how much Annabelle has overcome just to be here today.. smiling.. laughing.. running and playing. When the world wants to drag her down, she laughs and skips the other way. Find the joy in everything, I promise - it surrounds you. You just have to look for it. I found mine.... she's asleep right down the hall...