Okay, I'll admit it. I'm wishing for a break. I'm not talking about your typical break, like a day at a spa, a night out with my husband, or weekend away with my family. I'm wishing for a break from cerebral palsy. Wouldn't it be amazing if Kaitlyn could be granted a vacation from all that she deals with, even for 1 day???
On a day to day basis, we just seem to do whatever needs to be done to get through that day. Right now a typical day for me and Kaitlyn includes doing some stretches, getting her hooked up to her ESTIM, specially thickening all of her liquids, putting on her braces during the day and strapping her into her casts at night. The day also includes reminding her to get her heels down when she walks, and get her legs in the right position when she sits on the floor. It includes making sure she's positioned just right each time she sits in a chair to eat, do her homework, color, or play a game. Throughout the day there are a million little things that I am constantly doing or thinking about to ensure that she's well taken care of.
I have to say that most days I just do all of the things I mentioned above without much thought. However, tonight I had some time to think about the bigger picture. Kaitlyn has been sick all week with a fever, cough and raging ear infection. She is having lots of trouble sleeping because she's been coughing so much. I went into her room tonight and found her quietly whimpering because she's so tired but just can't sleep. I picked her up, wrapped her in a blanket and sat in a rocking chair with her. It's been a long time since I've rocked her to sleep, now that she's a big 5 year old! As I held her in my lap and watched her sleep, I rocked for nearly an hour just thinking about all that she's been through. I started to think back to all of the times I've rocked her when she was sick or hurt, and realized that there were way too many of those times.
I have very clear memories of holding her tiny body in the NICU, and rocking her for hours. I remember her having wires and tubes coming and going in and out of her little body and being overcome with sadness that she had to deal with all of that.
I also thought about the time she was hospitalized with the flu as an infant. She was so, so sick then. Her little lungs were seriously underdeveloped due to her prematurity, and she was having great difficulty breathing. I remember rocking her in her hospital room and watching a story on the news about how another little baby in North Carolina had died from the flu that week. I stayed up that entire first night with her. I held her, rocked her, and watched her sleep - the whole time being unbelievably frightened that she wouldn't get through that flu.
I then started thinking about the time I had to hold her down on a doctor's exam table while he plunged huge needles directly into her calf muscles to send botox to her muscles while she screamed out in pain.
I thought about holding her in my arms before she went into her SDR surgery. I also thought about having to let her go when a doctor took her from my arms outside of the operating room. I then thought about holding her for hours in the hospital as she recovered from that surgery.
Finally I remembered just a couple of months ago holding her week after week as doctors manipulated her legs and casted each leg, only to cut the casts off a week later and do it all over again.
This little girl has been through so much. Sometimes I feel like it's just too much. I start to think that maybe we should just take a break from all of it. I'd love to throw her braces out the window and go buy her all of the fashionable shoes all of the other girls wear. I'd love to throw her walker and crutches out that same window, and let her run across the lawn like other children. I'd love to just let her sit, move and walk however she wants to without me hovering over her. I'd love to take a break from physical therapy and doctor's visits and just sign her up for swimming, gymnastics, soccer, or whatever the heck else a typical 5 year old spends her time doing.
While I'd love to take that break and do everything that I just talked about, clearly I know that's not an option. At the end of the day today, and at the end of the day everyday, I will continue to do everything I can to help Kaitlyn reach her greatest potential. You see Kaitlyn never asks for a break. She wakes up every day with a vigor for life and an iron will to do her best. She is incredibly determined. If she can continue to endure all that she does with a smile on her face and a willingness to work her little butt off, the very least I can do is be by her side to lend a helping hand.
Whenever I have a minute where I feel like I don't have the strength to deal with this, I see how strong Kaitlyn is and immediately feel stronger.
"I take a look at my daughter and see what she's going through and how hard she's fighting and it really helps give me the strength I need to get through this."
I had no idea then that years later that quote would continue to ring so true. Here's a link to that news story...
http://www.wral.com/news/local/story/110896/
Oh, Tara! Do I know where you're coming from. You are an amazing Mom and Kaitlyn is an amazing young lady. I am always amazed at her strength and determination. I wish she and Malayna could meet so Malayna could learn from her. Malayna has been very sick lately too so we've been doing lots of rocking and cuddling here too. When our little ones are sick it makes everything else seem so much worse too. Sending cyber hugs your way!
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