Ahhh, the innocent hope I had four years ago. That innocent hope I will never have again. I'm experienced. I'm seasoned. I'm tired. I'm sad. I'm angry. And I'm trying. But it is hard.
Since that post four years ago...
I had to stop sending her to school and put her on homebound,
She got healthy (thanks to not going to school).
She started to tolerate a cap (which allowed her to learn to breathe through her mouth and nose for the first time ever).
She was decannulated.
She started to attend school for short periods of time.
She worked up to full days.
She changed schools and moved to our home school.
She attended her first entire full school year ever, 3rd grade.
She went to swim lessons and could hold her breath and pick up things from the bottom of the pool.
She talked up a storm and was able to be understood, even by people who didn't know her.
LIFE WAS GOOD.
Then she had surgery to open her mouth and BOOM, all that good stuff was gone.
She almost died.
She was re-trached.
She got a horrible bedsore.
She went septic.
She spent 4 weeks in an ICU.
She's back on homebound because she can't attend school right now.
She has virtually no air leak around her trach, so she can't wear a cap or speaking valve. She can hardly speak, and knows it.
Honestly, there's not a lot of silver lining right now. Trust me, I've tried. And I consider myself a master at finding it.
I need to have patience. She went through utter hell, and lived to tell the tale. I need to give her body time to heal and hopefully, she will start to get her strength back and will eventually be able to breathe around her trach (without additional surgical intervention, which is my fear). It is just really, really hard.
I need to have something to hold on to that tells me this will all be okay. But that innocent hope is gone. And life with a trach (AFTER life without it) isn't okay. I'm sorry. But that's how I feel.
There was a time years ago that her eating by mouth was important to me. In time, I came to accept that maybe that just isn't going to happen. And, well, life without food IS okay. Maybe she feels differently, or will in the future. But, from my perspective, she has a really good life without food. Being tube fed hasn't really stopped her from much.
But the trach? Well, that's an entirely different story. It stops her from a lot. And I'm so terrified that it won't be temporary. And I'm angry. I'm angry that life has to be so freaking difficult for her. She's just a kid for crying out loud!
I know that most parents feel like their kids grow up so fast. And they do. I know, I have two of those myself. And I am so grateful that they are healthy and free to grow, as they should. I see girls who are Harlie's age, and they are becoming more mature, looking more and more like beautiful young ladies.
Harlie's body is not free to grow. She is 11 years old and still wears size 1 in shoes. She weighs 52 pounds, which is 2 pounds less than she weighed last year at this time. She measured 48 inches tall a week ago, but was 49 inches tall last year (explained by loss of core strength and not being able to stand up straight). All of this is because her body can't focus on growing. Not that I care much about growth charts, but to illustrate my point...
If August just hadn't happened... Harlie had such an amazing two years. The fall to here was fast and hard. I wish this post could be more uplifting. Maybe her next birthday eve...
Tomorrow, I hope she feels better than she did today. I hope she knows that I will always fight for her and that I will never stop trying to make her life better. I hope that she has more good days than bad. And I hope she knows that we are so, so grateful that she's here today, for us to love with all of our hearts. And I really hope that all goes well with her main birthday present, getting her ears pierced! We are taking her tomorrow when Tom gets home from work. Hopefully, tomorrow I will be able to post that it was a success.
Thank you for all the love you give to our sweet girl. We are so grateful!!
Much love,
Christy xo
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