We Can

I've been thinking the last few days how over the years we have figured out how to do different things.

I remember when Jilli was put on oxygen at first I thought of all the things that we couldn't do. I didn't think we would ever get back to Disney World after that because how would we manage with all of her stuff... but here we are several years later and my parents are bring us to Disney for Jilli's birthday. Things that once felt so overwhelming are now normal.

This is one of those times that I am thankful for my own life experiences. I don't talk much about my own health stuff and if you haven't known me for long you don't know about my battles with health all of my life. The times I was very close to intibation from my lungs or how I almost ended up with a feeding tube in high school due to my GI issues. I still have POTs which is a disorder where if I stand still too long I will pass out. Thankfully I have learned to move my legs as I stand and lean on things and that if I start feeling nauseous while standing to sit down. I have EDS which means my joints often dislocate. I also have IBS which means most days at least once a day my intestines hurt pretty bad for between 5min and an hour. I always need to be wise where a bathroom is and sometimes my plans have to change based on that. However I have always had health stuff. For me it is my normal and my parents always encouraged me to do all I can despite my health needs.

I remember when we brought Jilli home with the NG tube how overwhelming life felt. We were not sure how to bathe her. We were feeding her every two hours. Feeding ruled our life.

But now I see how feeding doesn't rule our life anymore. We fill the girls pumps every four hours and do meds a few times a day but our life doesn't revolve around that, it is just part of the routine.

I remember seeing different activities and places in the community and wondering how we were going to make them work and if they are possible, but now I see how both kids are going to zoo class tomorrow. For Jilli there will be adaptations, she will use her wheelchair, but she will participate with her peers.

The girls do so many things. Yesterday we had to run to chw to get my TB test read and after that we went to lunch with Brent. Jilli was struggling to sit in the chair safely so Brent got her wheelchair for her to help support her. We ran to Toys R Us after (got Lydia's birthday shopping done) and both girls rode in the cart but they still had fun looking around. After that we stopped at an adaptive playground and Jilli used her wheelchair and I walked next to Lydia with her pump and oxygen. We only lasted 15min and sure sometimes I wish we could just go play at the park for hours and I could sit on the side with a book, but we are able to play at parks and enjoy the world around us.

There will always be some things the girls can't do. They can't eat safely. They can't be around cats and dogs.

But there are so many things they can do... sometimes it looks a little different but I am so thankful that my mind has shifted from can't to can. I am thankful for the special needs families that have come before us that we know that live this out!

Different abilities don't get us down... things just might look different!

I will fully admit that roller skates are something I said no to over and over... I thought that was a can't... until Jilli did it in PT. She more walks in the then skates and is only allowed to walk in them on the rug in the living room or she falls but they make her so happy

Zoo class

Medical tubing does not stop us from cool clothes... it just means that we have to buy clothes that work with the tubes

We do the resurrection eggs instead of eggs filled with candy

fun at the children's museum

An adaptive mattress in a castle bed frame with fun sheets

Jilli trying out an adaptive bike at PT. Soon she will have her own thanks to Shriners

Jilli does school each morning. Her Special Tomato seat helps to support her body so she can focus on school and not trying to keep her body in a chair

When I first saw the garden at RMH I was unsure how we were going to manage it with a gravel path... Ann last summer had that path changed to bricks so wheelchairs could use the garden too

Lydia on an adapted trike

Most zip up pajamas don't work because of how the girls tubes are but we found these really cute ones from Target where the zipper goes the opposite direction

The girls use kid sized shopping carts at RMH to wheel their oxygen and pumps around so they can play with their friends

Helping Kohls take down the tree at RMH, they were so good at adapting so she could help

The girls still swim we just adapt. We cover their feeding tubes and stick to spash pads or in floaties in a pool. We do avoid natural bodies of water but they both enjoy swimming. We also drain their stomachs after just incase any got in their mouths.

When Jilli went on oxygen I wasn't sure how this slide would be anymore with getting tubes tangled... now with two girls on oxygen the slide lives in the living room to help them with PT goals. Sure they get tangled but we help get them unstuck!

In other news... NIH sent today that they got our records from CHW!!!!! Yeah! Now the 8 week process starts!

If you want to join out team for the CHW run/walk CLICK HERE to donate or sign up!