by Tamara Flaherty
Please go to http://www.gofundme.com/WheelchairPrincess to donate, or click on the link at the bottom.
I’m going to tell you a story that just might make you cry. It’s made me cry many times. In fact I couldn’t stop crying just now as I proof read it.
It will also make you laugh, smile, and cheer.
It will almost certainly make you thankful.
I pray that you will keep reading.
I pray that when the story is finished that you will have been changed.
I pray that you will have knowledge and perspective that you will share with others.
I pray that you will act on that knowledge to prevent this story from happening to anyone else.
I’ve never told her story to an audience in this manner. As a nurse, and child-abuse prevention advocate, I’ve presented her “case” in a clinical way as a teaching tool, but I’ve never really just told her story.
Once Upon a Time,
A beautiful baby girl was born. They named her Michelle which means “Near to the heart of God.”
She arrived in this world, unplanned, and mostly unwanted.
I don’t understand why she was in such a hurry to arrive but she was.
She arrived early, and tiny.
3lbs, 8oz and 11 weeks early to be exact.
I didn’t know her then, in fact I wouldn’t meet her for several months.
I had no idea when I met her that she would be my daughter, or that she would change my life.
But I’m getting ahead of myself.
She spent several weeks in the NICU before she was bundled up and sent home. She had passed all her tests with flying colors and despite her early arrival, she was given a clean bill of health. She was a fighter from the beginning you see.
She had no way of knowing that her struggle in the NICU would be a stroll in the park compared to what was coming next.
It’s really no surprise that things went horribly wrong for her.
The red flags warning of a whole host of risk factors for child abuse were whipping wildly in the wind but nobody noticed.
Michelle only lived at home for a few short weeks. Home usually conjures up thoughts of warmth, acceptance, and love.
Not for this little one.
Based on her medical records, she mainly felt hunger and pain.
Whenever she cried, he held his hand over her mouth until she stopped.
Of course you realize that she only stopped because he cut off oxygen to her brain until she passed out, right?
Over. And. Over!
He also really hated it when she was allowed to eat, because it took the attention away from him, and so he would prevent that particular activity much of the time when he was home.
She weighed just a little over 5 pounds on the night he destroyed her.
At some point during the few weeks she was home, several of her tiny little ribs were broken. They were in various stages of healing when she did finally make it to the hospital, indicating that the abuse had been inflicted over time.
On the night (Sept 21, 1995) that her little body and mind were finally battered beyond repair, she had committed the unpardonable sin of crying, and she was sentenced to death by shaking.
Can you believe that?
What was she thinking?
How inconsiderate and defiant she was at 12 weeks old and barely 5 whole pounds, to have the sheer audacity to cry, when he wanted her to be quiet?
So in the space of the next few minutes, he picked her tiny little body up and shook her like a rag doll. He shook her HARD!
So hard that when he finally threw her lifeless body down, she was, in fact lifeless.
Many people do not understand the level of violence that goes into shaking a baby. They tend to think it’s more like a rough jostling. It’s not at all like that.
The force that is required to inflict the kinds of injuries that Michelle and other babies like her suffer, is so violent that anyone witnessing it would immediately recognize it as life-threatening.
That night was, at the very least, the second time he had shaken her. The previously broken ribs were the result of a prior, lighter shaking.
He would only spend 3 years in prison for what he did to her. It’s as if her life meant nothing!
I believe that he should be in prison for as long as she remains in her prison and not a moment less.
It is a legal system however, not to be confused with a justice system, but that story is for another blog.
Her 18-year-old birth mother wanted to call 911, but he didn’t want her to.
She did it anyway.
She performed CPR until the paramedics arrived.
No matter what happened that night, or the nights leading up to it, she saved Michelle’s life and for that I am grateful.
I will, on her behalf, write another blog about spousal abuse at some point.
In any case, that was the night that Michelle, as she was born to be, as she should have been, died.
Even though they were able to successfully resuscitate the tiny body in front of them, a totally different child survived in her place.
The new Michelle had a stroke that paralyzed the left side of her body.
She suffered severe, irreversible, brain damage.
She had her eye muscles torn so badly from the shaking, that she needed surgery to point them both back in the same direction.
She has cortical visual impairment.
She has cerebral palsy with spastic quadriplegia and will never walk, stand, or even sit up unassisted.
She has sensory integration disorder that tormented her for years. The sound of an envelope being ripped open would send her into a panicked frenzy.
Over the years she would have multiple surgeries.
Photos: Seafair Pirates at Seattle Children’s Hospital
ALWAYS with a smile on her beautiful face and a song in her heart.
Rods would need to be placed in her back to help her sit upright, as years of sitting in a wheelchair had bent her spine so badly that her left lung was at risk of collapsing. She still suffers from chronic back and neck pain as a result.
A pump would need to be placed in her abdomen to deliver medication to keep her limbs from tightening up.
That pump would need to be replaced and then removed after an infection nearly killed her. Her limbs are now so tight that it is almost impossible to dress her without extreme difficulty.
Her tendons in her left hand would have to be cut, so she could use that hand. The surgery didn’t work however, and she can only use her right hand now and even that is with increasing difficulty.
A feeding tube would be placed in her stomach to feed her because she never learned to chew solid food.
I’ll stop there. There’s so much more, but I think I’ve painted the picture clearly enough.
When she was 2 years old we adopted her.
She had been in foster care up to that point. I was blessed to become her mommy, and my (now ex) husband to become her daddy.
She had three big brothers who loved her as well.
She was Home!
When she came home to us, we were told by her pediatrician to just make her as comfortable as we could and that she would never do anything more than what she was doing; Sitting, eating, and sleeping.
We saw something in her eyes however, and just couldn’t do that. We deliberately ignored all of the “experts,” and began treating her just like one of the other kids as much as we could. Reading, singing, and talking to her. Putting her in. “Time-out” when she threw one of her infamous fits, and generally treating her like a normal kid.
The boys would “drag” her off to the big castle we had in the living room. She would be the Princess and they would fight each other to rescue her.
Soon she was talking! Her first word was “tree” when she was about 2 1/2. She didn’t speak very clearly but well enough that the people who loved her could understand her.
She settled in nicely with her 3 bothers and before long, life settled down into our new normal. She went everywhere we went and did everything we did.
When she was 3 years old, I took her to Shriner’s Hospital for a wheelchair evaluation to get her a power chair. They said that they couldn’t recommend one as they did not believe she would ever be able to drive it.
We got home and I called a wheelchair company. They sent a rep out and he did all the paperwork to get her first power chair.
Boy was I nervous the day it arrived. I had let the doubt creep in and was panicking thinking that I had just made a 10,000 dollar mistake.
She proved everyone wrong again. She was driving like a Boss within weeks!
I never doubted her after that.
She wanted to roller skate at the local rink with her brothers so I put on my skates and headed out onto the floor pushing her manual wheelchair in front of me.
The attendant stopped us and told us she couldn’t go out there because it was too dangerous and she might get hurt.
I calmly pointed out that there were dozens of kids,
on a concrete floor,
At least she was strapped in for goodness sake. She had no argument to counter with and so off we went to do twirls in the middle of the rink with Michelle laughing with abandon.
She sat for months and watched her brothers play little league. She desperately wanted to play baseball just like her brothers, and so a bunch of volunteers got together, and helped build a league for children with disabilities. Buddy Ball was born.!
She had her very own team and she loved it!
Two years ago she went skiing for the very first time with an amazing non-profit organization called “Outdoors for All” check them out! She had a blast riding the lift and skiing down the mountain. She even wiped out.
She continues to amaze me with her spirit!
I can see I’m going to have to shorten this story a bit.
So much has happened over the past 16 years.
If I could use only one word to describe my daughter, that word would be joyful!
Michelle finds joy in anything and everything. She smiles through her pain and she loves deeply, even those who do not love her.
She has been through more in 18 years than most of us will ever face in our entire lives and has done it with grace and laughter, as anyone who knows her can attest.
Her physical care is difficult, heavy, and exhausting.
she is lighthearted, joyful, and content.
I can no longer lift her and do her daily care as a result of my own illness.
After several placements into medical care homes over the past year and a half while we tried to figure out a plan, her dad (my ex-husband) quit his job and moved here to care for her full-time. I am grateful beyond words and she is finally home with her family again.
He is doing a fabulous job and she is happy.
She wants very little in life. The one thing she has always wanted is to be able to walk.
That hasn’t been a reality for her and unfortunately it never will be.
She has come really close though.
She had a special standing wheelchair that she could independently stand up and drive in, but she lost it.
The story of how she lost it is both infuriating and heartbreaking.
The standing wheelchair in the pictures that you see her in, was a loaner from the vendor.
She was allowed to use it while her custom wheelchair was being ordered.
My husband was active duty Army at the time and she was covered under a program called ECHO.
This is a program for disabled children of active duty soldiers and it allowed her about 36,000 dollars a year for needed equipment. We had never used or requested any of the funding until this request.
Her ECHO benefits were being administered by US Family Health Plan (USFHP), a civilian provider of military benefits in the Pacific Northwest.
We started the process of getting her chair about a year before my husband retired from the army.
We did all of the evaluations, sent in all of the documentation of medical necessity, and after what seemed like one delay after another, we finally got the approvals!!
Once the vendor got full approval, her wheelchair was ordered.
Michelle was so excited and we were excited for her! This was a custom fitted chair with everything she needed to be as independent as possible.
My husband retired on August 1st, 2012 and her chair arrived from overseas on August 3rd, 2012
Because it arrived 2 days after my husband retired. USFHP refused to pay the ECHO benefits.
As a result she lost her custom chair and because she no longer had one on order, the vendor came and picked up her loaner chair. (I don’t blame him for that. Pete was as upset as we were).
Michelle was heartbroken!!
The benefits of this chair for her were numerous.
She was able to stand whenever she wanted to, with the push of a button, and without help.
The chair had thigh and knee supports to hold her up. This took pressure off of her tailbone which helped prevent pressure sores.
Standing helped her expand her lungs better which helps to prevent pneumonia, one of the most common causes of mortality in children like her.
Being able to stand helped her stretch her legs out, which slows down contractures that develop from being stuck in a sitting position.
She was able to reach the microwave, the sink, and the refrigerator for the first time in her life. Standing allowed her access to things that she couldn’t reach in a standard chair.
Most importantly she loved being eye to eye with her peers. She loved being “tall”.
This chair allowed her to interact on the same level as others.
The bottom line is that it made her life so much better and she loved it so much!
She really deserves to have this chair and I hate the way it was taken from her.
I was so devastated at the time and so hopeless that I admit that I gave up. I let them win. I stopped fighting for a while. I was defeated.
I’ve caught my breath and found my fight again and I’m ready to do whatever I can to help her get her chair back.
Her body is now tired, twisted, and weak.
She has a fierce spirit however that has fought through Hell and back, armed only with her courage, her love, and her joyful heart and so I’m not going to end this story because it’s not over yet.
Help me write an ending that’s fit for a princess!
Will you click on the link below and help me give her the only thing she has ever asked for?
Become a part of the miracle that she needs!
Become part of her story.
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