Tuesday, January 10, 2017

A little something to think about.

Every now and then I blog post when I need to vent. Looks like I haven't vented in a while so here I go. But, I've had a lot on my mind. Lucy has been sick. And when I say sick, pretty dang sick. She's still struggling with it. But, she's a whole lot better now. Poor girl needed a lot of help with her oxygen needs. She was out of it and sleeping for days. I literally thought is this the illness that will take her? The thought crosses every parent in a similar situation. I knew this virus would be bad. This virus took her to the PICU 3 years ago. It took weeks to get out of her system. And now as I see this year is a bad one for the nasty viruses. I worry for my Lucy, I worry for my friends. What a sucky thing to have to worry about.  I have to think about scary out comes. I absolutely have to, because when you have a kid like mine, it's the future. I was teaching Dawson school yesterday about the organs in the body and how they work. Somehow I ended up explaining Lucy and then I gave him the talk about Lucy. I've tried to explain this a little before. He was just too young to really get it. Soon he had tears running down his face. I did too, and we both cried for a bit. I told him to always be grateful for his sister. It's been a blessing she has been with us for 5 years so far.  I told him how I've felt bad that I have to home school him to protect her from germs. He really doesn't mind and tells me he would rather be home and learn. He is very social, so I have felt bad he is deprived in social interaction. I told him how I felt bad that when he was little I had to really concentrate on Lucy. When he was 2 and 3 life was a blur. I wish I could've spent more time with him. The positive is that my parents have a very close bond with him. They're his best friends, he absolutely adores them.  They have been there for us when I needed them. I would be in a really hard spot if it wasn't for them. My support system is small which has been difficult. I'm so grateful to my parents that they help us. I was grateful that this last week Rachel and Lori brought by dinner. It helped a lot, thank you so much!
Lucy's oxygen needs have been a little rough the past couple of nights, but the virus is nasty and can cause some issues even when the worst has come and gone. We will just have to work through it until it leaves. The important thing for me is to carry on like normal. I'm ok, I don't like pity parties. I enjoy going out so I can distract myself. I think when you stick yourself at home it doesn't help. You have to get out even if it's for a few minutes to recalibrate.

Do you have New Years resolutions? I don't mind having new goals or even old goals to work on. Mine is to continue to work on being a better version of me and not worry about what other people think. I'm taking out toxic surroundings whatever they may be. Let go of the bad or harmful in your life. Don't let other people pull or put you down. Surround yourself with upbeat and positive people. Everyone has a bad day, but don't let them lead your life.  This is my advice to myself and to whoever else agrees.

I've seen and experienced a lot since Lucy. You really see the big picture in life. She is a tough sweet little girl. I have experienced disappointment with her challenges. From what has happened to her body along with the actions of people I've loved around me. I'm working on not being bitter about this, but it's hard. Since Lucy's duplications hasn't really matched how her body should be working, we have gotten another test that I hope to get back soon. It can take 4 months, so I will learn to be patient as usual. It may show she has more going on or it may not. It provides an answer for me if it shows more or not. I'm very excited to hear back what it says. I wouldn't be pursuing this so much if it wasn't for her unique situation. I learned she had a Xq duplication when she was only a couple weeks old.  From my understanding it's so large you can see it under a microscope. But, most of it was shut down from her normal X. So, why is she so severe? Did she just copy too much? Did the little parts left active cause this havoc? Or do we have something somewhere else hiding? That's why I'd like to know.  I find genetics fascinating and like to learn about all of it. It doesn't scare me anymore. This girl has been through the ringer already. I want to know all I can even though it doesn't change anything. It might help someone some day. No research for any disorder would ever be done if we just sat there without pursuing why. I am already so far down the rabbit hole, I have to find out as much as I can with the testing that is out there. And if you're a young family, you should find out in case you want more kids. Right now we don't, but if we ever did I'd like to know if something was carried anywhere. It would be pretty shocking if we did, but you just never know.

Hoping for patience until we get more answers. I pray that we get through this virus season. I'm scared and so are others. Pray we all get through this season 🙏.

No comments:

Post a Comment