“I don’t want to end up like Eli!“
She is strong and fierce, she tries as hard as she can in all that she does, but she gets it and she gets what could be coming! Unfortunately I wish she didn’t, but she does.
I hear it from her teachers and aides, what a sweet girl she is and how much she enjoys helping others like herself. I’m so proud of her and wanting to help others. However, there is another side to her that only comes out when she knows she is free to say what she feels. Yesterday was one of those days.
As I picked the kids up from school, and they got in the car, everything seemed as normal as every other day, until the door shut. I could see the tired written all over her face and I knew her body felt it as well.
I asked her if she was ok and I was not expecting her response. Eli had been in the front seat as he beat her to the car this day, so as I turned around to wait for her answer, I could see the little mascara that she wears streaming down her face. This followed by the statement that she didn’t want to end up like Eli in a wheelchair. It was said with a force that I hadn’t heard in a while and I knew she was hurting, probably both physically and emotionally.
I digress to two weeks ago when we took them to the outlets to look for school clothes. We had been in maybe four stores so far, but as we went to go into Old Navy before grabbing a bite to eat, it only took about a minute before a young girl started staring at her. Now it wasn’t a little girl, but a girl about her age. I could see her watching her and the faces she was making, which I am sure was more of a curiosity then anything. Unfortunately Ella saw it too, and it was the first time that I not only saw sadness coming from her, but anger too! We immediately left the store with her angrily stating how much she hates her legs, hates her feet, hates her back pain and ankle pain, she hates MLD …we do too!! I tried the normal hugging and telling her I’m sorry, explaining that she has every right to feel this way, because it sucks! Her dad did as well, but this day nothing was working.
She may have a disability and may not be as “with it” as her peers, but she knows more than we give her credit for. She knows just how different she looks when she walks, and it is beyond hard to watch her recognize this.
When school started I knew it could go one way or another. It’s a big school and classes all over. We did the self guided tour and that was not a happy occasion, just a reminder of how she can’t walk like she wants to.
We pepped her up, explaining that staff and teachers know how to help, getting her to leave each class early, take the elevator, and then the big one “there is also a wheelchair she can use if she needs it”
Inside I am dying at the thought of that. Thoughts running rampant in my head.
We saved her! why is this happening? she can do it! She WILL do it! These bare the thoughts that were going through my head and also hashed out with Hut. So we encourage her that she can do anything! Take b your time we tell her, you won’t be late we say. The teachers know about your disability we remind her.
Then I wonder, is this for us, or for her. Do we not want to see what her NEEDS are, do we not want to ACCEPT what she might need to make it through the day. A lot of soul searching had to happen, and continues to happen about this subject. It’s no easy answer.
If we give in to the chair now, does it make it more likely that she will want to use it when she is tired in the future? Then I tell myself it’s only for when her ankles are hurting, or toward the end of the day when she is exhausted. The chatter in my brain never stops. How do we accept that if this is her fate?!
Obviously we would never deny Ella what she needs, but does she really need it, or can we just ask her to keep pushing through? I don’t know what the correct answer is, but I do know, that day at the outlets changed her.
She is more aware of her differences, more angry at her body and the disease, she is more likely to not want to walk much in front of people when we are out. It has been gut wrenching watching this unfold, her own realization that she too could some day be in a wheelchair like Eli.
Back to the day she expressed it…
“I don’t want to end up like Eli” she said, tears rolling down her face, kicking the back of Eli’s seat to get the frustration out. We calmly talked, and God bless Eli, he sat there listening to it all and we only revisited it later before bed to make sure he was ok with what transpired. As we talked, she expressed how bad her legs hurt, her ankles, how she hates her gym class because she walks too much, (I am working on this) Then the kicker, “I don’t want to end up like Eli, but it’s just so hard every day”
Talk about trying to hold your shit together, it was nearly impossible for me not to pull over, grab her and cry with her. She calmed down by the time we reached the house and I said we could talk more whenever she wanted. It’s unfortunate, but I don’t have any good answers, just a good ear.
Over the next day we talked a bit about a wheelchair and she asked if I would be mad if she used it. Of course not, I answered, but I wanted her to know that this disease is wicked and when you stop doing things, it can get worse quicker, her legs; both strength and endurance will be challenged.
I know she felt heard, as her dad and I listened and I hope she felt supported as well! As much as the idea breaks both Hut and I, we know that this is Ella’s journey and we want nothing more than to do what’s best for her.
Just another lesson of compassion, empathy, patience and endurance, because I don’t think we have learned enough yet! (I’m not a funny person like Hut, so I guess I should say that was sarcasm)
I don’t know what’s next for Ella pertaining to her walking, but we will continue taking it one day at a time and let her lead the way!
https://youtu.be/Qop5XLgwkNc?si=JlAUvma-5g0__h5L
Fear Not 