Special Needs Mom – Having a Child with Special Needs

special needs mom

Special Needs Mom – My Story

Trusted with a Special Needs Child

It never even crossed my mind that I would have a child with special needs. Most women during pregnancy don’t even think at any point in time that their child could have a disability. I know I never thought I would be blessed with a child with special needs. But, when you do find out you’re a special needs Mom. You realize that it’s not the end of the world. There is never thoughts of regret or maybe that I could have done something different. As I mentioned before, you realize that it’s a blessing. And if there is a higher power that is directing the show, they trusted you to take care of this particular soul. My daughter Kaylee has brought enormous amounts of joy to our family and I wouldn’t have it any other way!

No Warning Signs During Pregnancy

When you find out you are pregnant, it can be a rush of different emotions. Excitement to worry. For me it was my first child. My husband and I were so excited! Other than my daughter’s heart rate dropping a couple times, it was a rather normal pregnancy. After that I had to do weekly stress tests. Nothing came of it, which was a huge relief. Delivery was so quick, my husband almost missed it as he was out of the room making phone calls to family.

Missing Milestones

Our little bundle of joy was born and we were excited to be a family of three. Months would pass and we had several scares with Kaylee. She stopped breathing many times to the point where she would turn blue/purple. Every time we were able to get her breathing again. It wasn’t really until she was old enough to miss certain milestones that we noticed things just weren’t right. I can honestly tell you if it weren’t for her amazing pediatrician in Utah, Dr. Valerie Rahaniotis, Kaylee wouldn’t be where she is today. Dr. Rahaniotis was all over the early signs of developmental delay. And also helped me immensely in being the best special needs mom I could be.

Something’s Wrong, But We Can’t Pinpoint It

Kaylee would go on to have years and years of testing, several surgeries, and hours of therapy. She has had a number of genetic tests done. Every time the tests have come back with no findings of a diagnosis. At first I was so frustrated and discouraged. As a special needs Mom, I wanted answers. I wanted to know what the future held for my daughter. When you know your child is being tested for certain syndromes (Angelman’s, Rhett’s, Aspergers, just to name a few.) You do so much research, to prepare yourself if it comes back positive. If you’ve never had to research a disabling medical diagnosis, consider yourself lucky. When you read that your child might only live to be 5 or 6 years old. Or they might start regressing. That is a lot to try and process!

Kaylee may never get a diagnosis, and I am okay with that now. It won’t change the fact that my husband and I will do everything we can to give her the life she deserves. Yes, she continues to get therapy, have surgeries and testing done. ┬áKaylee is a warrior, she tries so hard at everything that comes her way. No, it isn’t always easy.

From the Outside Looking In

Being a special needs Mom, IS NOT EASY! There are days that I wonder how I can go on. But then I think about my daughter, her life has been anything but easy and she never gives up. I would say one of the hardest things for me is how ignorant people can be to those different than them. Kaylee is 13 years old, but is on the level of an eight or nine year old. She can get overwhelmed very easily. Looking at Kaylee you wouldn’t know that she has special needs. So when we are in the grocery store and Kaylee has a meltdown. People stare, they give me looks like you wouldn’t believe. I’d be lying if I said it bother me, but I’m learning to not take it so personal. Maybe someday they will learn to not judge others. But that’s their problem.

The Routine of a Special Needs Mom

We have good days and not so good days. I get tired and stressed, like other moms. Our schedule can be very busy and hectic. 2-3 doctor appointments in a week. So far this school year Kaylee has only gone 1 week without having some kind of doctors appointment. You might not give it a second thought about having to take your child to a doctors appointment. For me, I have to give Kaylee plenty of notice for an appointment. She thrives on routine and when it is disrupted, it can be very overwhelming for her.

A Support Network is Huge

I feel lucky that I have found a wonderful group of friends. They know my situation and are 100% supportive of me and my family. What means the most to me is that they treat Kaylee as they would their own child. Even better is when they ask questions because they don’t understand something. Or they take Kaylee’s needs into consideration when we make plans. These things are priceless to me.

Concluding Thoughts

I am not perfect, I don’t pretend to be. We are taking it one day at a time. I want what is best for my daughter as any mother would. If you are reading this blog post, I would like to ask you to be accepting of those different than you. Take time to learn about things or people you might not understand. Please realize that not everything or everyone needs a label and be okay with it if you can’t label it. And don’t be too quick to judge a book by it’s cover.

Holly

P.S. For more blog posts like this, please visit the blog section of my website!

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