“Rockstar, BAM!”

“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.

IMG_1533

IMG_1592

Halloween 2014 — could it get any better? 

 

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.

IMG_2922

The stroller wheelchair lets her sit, tilt and lay flat. There’s room for BiPAP, suction and the feeding pump.

IMG_2923

Laying flat in the stroller. This is the first time J has been able to touch the piano keys in years. 

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.

 

This week….

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.

 

IMG_2919

Spirit week for J’s school. She insisted on wearing three bows: “everything is not enough.”

 

IMG_2914

It was unusually warm in the Pacific NW. Here, Julianna is playing with sand from the Oregon coast. 

 

And…I have no idea where this came from. Someone complimented J on her sunglasses.

“Rockstar, BAM!”

 

11 thoughts on ““Rockstar, BAM!”

  1. mmm,
    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,
    Valentino
    Saturday April 23, 2016
    6:00 pm

    Like

  2. 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.

    Like

  3. 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

    Like

  4. 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!

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s