I am in our schoolroom. Maggie offered to take Joseph for an afternoon and evening of fun so that I can FINALLY get to the critical condition of all the Mom piles.
Of all the things that people don’t even know about families raising kids with special needs, I think the mountains of paperwork that typically crescendo to avalanche conditions has to be #1 on the list. Medical paperwork, therapy paperwork, insurance paperwork, goal paperwork, evaluation paperwork? Those piles appear and grow faster than rabbits having babies. People wanting us to fill out their paperwork; sign their forms; fax their forms; copy their forms; coordinate transmission of forms. Times three special peeps? Gets so out of control, I need to fire my secretary.
Oh wait. I am the secretary.
So I have entered the war zone…..
I realize there is one very, VERY important e-mail I need to get written first. It is weeks overdue. So overdue that our family must seem fictitious. This letter is about our Isabel.
Our Isabel has been diagnosed with a Neurodegenerative disease. It is called NBIA, which is short for Neurodegeneration with Brain Iron Accumulation. Her type is BPAN. She has global developmental delays, seizures and struggles with sensory issues. The disease is degenerative. She will start to have Parkinson like symptoms with severe dystonia. She will have retinal degeneration and optic atrophy, and possible blindness. She will endure much physical pain. She will stop walking. Then she will stop talking. She will lose her ability to eat. Then she will lose her ability to breath.
What our girl is going to face with this ugly disease is over the top incomprehensible. I still struggle to absorb what this disease means for her, and our family. Our shining smiley girl. Always wearing a backpack, silly, animal loving, music fanatic, dancing machine, giggly, “ShimShoot” pool lover, permanent marker stealing, constantly doodling, tantrum throwing, flip-flop QUEEN, pink nail polish demanding, cutting up books left and right expert, trampoline jumping, play dough rolling, Baby Evelyn loving, Starbucks sipping, train loving girl who is 13, not yet potty trained for #1 at all, but a dynamic M&M seeker after going “Dog Poop” in the toilet Master ~ this girl who we love beyond words, who taps the strength and patience of an entire family crew, who gives the world’s most incredible HUGS…….her future will be one of such incredible suffering, and an early death. How do you face this? We cling to our Faith. That is the source of our strength and hope.
One of Isabel’s doctors suggested Make-A-Wish for her. None of our other children have ever had a wish, so this would be all new territory. We were totally open to the suggestion. Dr. Hoganson was quick to point out at the time of Isabel’s diagnosis that the rules had changed and a child would already have to be manifesting signs of degeneration. Hearing him tell us this wasn’t a disappointment because just trying to absorb the shock of her diagnosis was enough at the time.
Months passed. More months passed.
Out of the blue, I received a phone call from a young woman from Make-A-Wish. She wanted to know if it would be ok to contact Isabel’s doctor again. We didn’t hesitate answering with a “yes”. I thought Isabel would still be ineligible as she was still progressing. Even with significant mental and physical delays, she was still making progress. Every tiny step of development was, and still is considered a very precious gain; a real and celebrated victory. I didn’t think I would hear back from anyone for a long time.
Life around here is lived at warp-speed. We all hit the ground with a sign-of-the-Cross, running. I really don’t have spare time to wonder about wishes. Maybe a family like ours shouldn’t dare to wish. Real life has a way of keeping that kind of thing at a distance. Kind of like. Far. Away.
That’s not always a bad thing. We have learned through so much to savor, appreciate, feel and celebrate the simplest, yet very real joys.Then came the day our world was suddenly, completely catapulted into OUTER. ORBIT.
Yep. Of course I was driving. Driving.
On the highway traveling with all my girls for a “Mother Daughter Weekend” at my sister’s house. Armed with plenty of junk food (sorry doc), cranking the tunes, we were so happy to be bopping along the highway from Illinois to Minnesota to visit the Aunties and the cousins!
Ring. Ring. Ring…….
Because I was the driver, Maggie answered. I thought she was talking to someone selling something, so I started using sign language. No, I don’t want to call back if someone is marketing the moon. Then Maggie asked the person to hang on. Nooooo!! I’m NOT buying anything. I was rolling my eyes as she put the phone on speaker phone.
It was all a blur as the young man on the phone told that he was from Make-A-Wish. More blur.
Isabel? What? Isabel? Wish?
Granted. A. Wish.
I wonder if the car became airborn with our reaction.
Keeping the car on the road, with all of us screaming, hooping, hollering, crying, laughing, smiling…..took every ounce of energy I could muster.
Isabel? Granted a Wish?
I’m sure all our screaming for joy could be heard in Alaska.
Having someone tell you they will grant your child a wish, a dream is pretty darn incredible. And it is so much more. Immediately the other children had SO much fun verbalizing what would be the best wish for Isabel. Isabel herself? Oblivious. Because she has a significant mental impairment, she has no idea. Pretty funny really. What she will know is the joy of whatever is granted on her behalf. And so we dream……
It has a bittersweet component. I wrestle with the fact that this gift is coming to her because she will die young. That includes the sad part. At the same time, I am elated. Then I feel how impossible it all seems! Our troops? I wonder how all the logistics of a wish can even happen. My sister, Ellen jokes about how getting this crew anywhere is like moving a herd. A very slow moving herd. (Isabel stalls us every 10 feet with her professional people watcher skills! Usually looking at people’s shoes as they walk! Yep, in a restaurant, she’ll stop at your table and oh so casually GAWK as you eat your dinner. She won’t ask you any questions. She’ll just stare, and stare, and stare.)
But the wish itself? Brings such light. Joy. Hope. Promise.
Over the top JOY!!!!!!!!!!!!!!!!!!
Isabel’s Wish Granters, Debbie and Richard, came to meet her this past March.
I was so worried she would be bashful. Debbie and Richard came with arms overflowing with gifts ~ everything Frozen, Playdough and Lego. Instantly won her heart! They even brought gifts for the other children so they wouldn’t feel left out! Within no time at all, Isabel and Richard were bouncing Crazy Aaron’s Putty balls across the family room to peals of laughter. (well, I probably shouldn’t say “peals” because Isabel actually sounds a bit like a chipmunk when she laughs!)
Oh yes, with a bag of her favorite candy (absolutely M&Ms!!) taped to a couple of the packages too! Deb and Richard were incredible; and we had such a fun time meeting them. They assured us there were no time constraints and that we were free to think about ideas for a wish for Isabel. We have had so very many happy discussions about what would make Bel the happiest, and a few laughs about what we know she would dread (any dressed up characters send her screeching in panic and fear).
The months tick off so quickly.
Last month we went to the NBIA Conference in Minnesota. We came home knowing that sooner would be better than later because we just do not know when the degeneration will hit. It can hit suddenly, beginning with the loss of her ability to walk.
Especially the past few days, we have all been doing some diligent digging…..
I just watched the two videos below. You HAVE to see!
Oh, and before you watch? Get your kleenex box.
My older kids told me about this story yesterday. They could never have prepared me for how emotional it would be to watch these inspirational videos. As I watched? I learned that the documentary will be showing here in Chicago – at only one theatre, this coming Friday, July 10th? Speechless. Heart busted wide open in awe…
Doesn’t Miles sweet little smiling face just melt your heart? I was crying and laughing at the same time!
You know what? When life is hard. When life wants to keep throwing curve balls. When sorrow seems to have the winning hand. This beautiful story of Miles hits you between the eyes. The fact that so many strangers got involved to give this sweet child joy is just incredible, fantastic. So filled with goodness that it makes you cry. There are just so many good people in the world. Love conquers sorrow. Good will always be stronger than all the evils in our lives. And Make-A-WIsh? What an organization changing so many lives for the better…..making dreams come true. To have someone tell you to “dream big”? There are just no words to tell what that does for a child, for a family, for the world. But as I watched these films I realized sometimes, words are not needed. These are the Corporal Works of Mercy, the Spiritual Works of Mercy embodied and given as the greatest of gifts from the hearts of loving people.
Good people make the world a much, much better place. There are so many good people in the world.
God sees us through everything, and blesses us even more, every step of the way.
Perhaps, we will dare to WISH ❤
Time to write that letter with Isabel’s wishes…..
Yes, how blessed we are!
Wait a minute.
Did I say I was clearing paper piles this afternoon? Oops.