“We think it’s finally time. We need to get a wheelchair.”
And with those words, the tears came, swift and strong. They took me by surprise, and they were the kind that could escalate very easily into outright sobs. I took a moment, annoyed that I was crying.
We had known for a while. Julianna was three, and the walker was getting harder for her. We couldn’t keep her in the $20 umbrella stroller forever. I knew I should’ve been grateful that we had good insurance, that we lived in a country that protects (imperfectly, yes) the rights of the disabled. A wheelchair would give J the best chance for a “normal”, independent life. Why did it hurt so much to state the obvious?
J’s physical therapist guided us skillfully and compassionately through that conversation. It was normal to be sad about needing a wheelchair, but it would open up new worlds for Julianna. It was time.
And for several months, it was glorious. J was a natural. She drove her “rock star pink” wheelchair with confidence and pride. She liked to go fast. The chair brought freedom: for the first time, she could go from room to room all by herself.
Julianna got the chair in spring 2014. By that fall, it got more difficult for her to use the controls and to even sit up. Her Make-A-Wish princess room reveal in Jan 2015 is one of the last times she used the chair.
For over a year, the pink wheelchair sat in our formal dining room. It was a big, heavy and expensive reminder of another loss. By late 2015, we knew we should move it on, but it took another six months to do it. We hear it has a good home now, and hope that it brings freedom and pride to another child.
About a month ago, I told Steve that I thought we should get another wheelchair. It would have to be a “medical stroller” type chair that would let J sit up (with lots of support) but also lie flat. It would need to hold her BiPAP and suction machine. We knew that it’d be several thousands of dollars, but if we found something that worked, it could expand Julianna’s world.
I asked J what she thought of the idea, and she was enthusiastic.
J: That’s a great idea, mom.
M: They’re expensive, but it’d be worth it.
J: How much?
M: Don’t know yet.
J: I have lots of money in my piggybank.
M: Julianna, you have a few dollars in your piggybank.
J: That’s a lot. I’ll pay for half.
Within a few weeks, we had a chair. Julianna’s piggybank funds, I’m happy to report, are untouched: the chair was donated to us.
The chair has already made a difference. J can move more easily throughout the house, and movement out of the house is no longer out of the question.
Part of me has a hard time remembering the person who cried about a wheelchair. So much has happened since then, and now I would give my right arm if it would somehow mean that J could use a power wheelchair again.
On the other hand, the pain is familiar. Parenting a child with a terminal illness means that your heart is fractured a thousand different ways. One day it will be broken, but until then, you fight to give your child the happiest, most comfortable, most beautiful life you can. And for us, this is what a wheelchair means this time. No sadness, just gratitude.
Julianna seems to have new energy these days. It may be the microphone, it may be the wheelchair. It is answer to prayer, and we will take every little bit of it.
And…I have no idea where this came from. Someone complimented J on her sunglasses.
11 thoughts on ““Rockstar, BAM!””
I’m very happy for Julianna and the entire family that she has a wheel chair and with
it comes added mobility and freedom for
her. She remains in my thoughts and prayers
several times a day, ever day. She is the only
true Princess, Mermaid and Rock Star I have
ever known as well as the most inspiring . . .
All the very best & God Bess,
Saturday April 23, 2016
I don’t feel I have words adequate for what life has brought you. You are an inspiration. My thoughts and prayers are with you and your family. I wish you love beyond any words I can say.
I love you finger nail polish Princess J.
Just the best Rock Star, ever!
And now able to move about her domain and speak her truth.
More heart warming and heart breaking.. they seem to go hand in hand sometimes.
Wonderful news! So happy to hear this……..play that piano Julianna…..so fun! Love you!
Oh! Hehe – Julianna is indeed special – I would suppose other kids would smile shyly & mumble a hurried thank you when paid a compliment about bright pink sunnies .. but I think I like “Rockstar – BAM!” even better. Teehee!
Yay to wheelchairs that open doors to new adventures, & double YAY that J’s piggybank funds went untouched 😉
hugs to the rockstar & the family! x
Thank you for starting my day off with a smile, gratitude and love.
Her “everything is not enough” is priceless and bless whoever donated that awesome wheelchair ♥
Oh Juliana! Love your spirit! What a way to start my Sunday morning. I surely can relate to the many emotional feelings about the wheel chair. I remember having those same feelings with my little sister and then the regrets when the motorized wheelchair was no longer an option. My Julie Ann took it so much better than we did. Our Jewels must be given an insight to life we can only imagine. You are so blessed to have her Rock Star spirit shining so bright this morning!
Wishing for more mercies for your family, of every size. You deserve them.
YOU GO GIRL!!! So glad you’re out in the sunshine.