Sleep apnea

About 3 years ago my son underwent a sleep study and was diagnosed with severe sleep apnea. A few months after that he had surgery to have his tonsils and adenoids removed. Unfortunately, the sleeping issues still persist.

For those who don’t what this condition actually means, I will explain. The symptoms include excessive daytime sleepiness, insomnia, nightmares, sleep deprivation, fatigue, headache, irritability and mood swings; in addition to episodes of not breathing, loud breathing and/and snoring.

My little one experiences all of the above. I myself don’t sleep more than a few hours a night because I am constantly getting up to check on his breathing or because he is awake all hours of the night. He is unable to walk but is at the age where he is active and mischievous.

This condition also affects his school attendance, since I don’t want to send him there to sleep through class or cry all day due to his sleepiness.

We have another sleep study scheduled a few months from now, so hopefully the doctor can come up with a plan to help us both. Until then, please pray for his health and my strength!

Thanks for reading…

Art Imitates Life

Although I work from home, I try to limit the amount of television I watch each day. I set the DVR to record certain shows that I enjoy, and I add movies and shows to my Netflix account.

Anyway, over the past several weeks I have noticed more actors with disabilities and story lines covering topics about disabilities.

For instance, the series This Is Us is now dealing with one of the siblings having a baby that was born blind. Now I already find it hard to get through one episode of this show without shedding a year. They have great writers and engaging content that keeps me watching. After the scene when the doctor tells the parents the diagnosis, I was balling. I know what it feels like (in real life) to feel helpless as a parent.

Then there is my British crime drama Shetland, where one of the female actors from few episodes is deaf. As I watched, I became curious about the way she spoke and how she studied the cast members lips before responding. So, I looked up her bio and found out that she (Sophia Stone) was the first deaf student to win a place at RADA drama school.

My point is, art should immitate life, however complicated it might be. I was happy to see these characters on television because it lets me know that anything is possible for my own child and for others.

Unless you are raising a child with special needs….

Unless you are raising a child with special needs, you don’t know what it is like to take everything you thought you knew about parenting and throw it out the window. I read this article and it resignated with me so much. Especially since I am always getting parenting advice from family members that have no idea what me and my household deal with on a day to day basis. Sometimes it makes me feel angry to hear them provide “advice” as if normal parenting skills can be applied to my situation.

Anyway, here’s the link for the article. Hopefully it can shed some light on the subject.

Back in the Saddle

So it’s been a few weeks since I lasted posted anything on my blog, although I am constantly coming up with topics to write about. I have managed to glance at my Word Press app to read over some of the posts that catch my eye, and even respond to a few of them. But my goal was to devote at least one day a week to my blog after starting a new part-time job. Unfortunately that has not been the case.

My day starts at 6:00am, waking up to dress and feed my 5 year old so that he is ready when his school bus arrives. Then it’s time for my daughter to get up and ready for school. Thankfully she is old enough to dress and feed herself, so it’s just a matter of making sure she gets out of bed. I drop her off at school, then I do chores, run errands and get at least 4-5 hours of work done before it’s time for the kiddos to come home.

By the time I get my daughter a snack begin preparing dinner, feed and bathe my son, and get him bed, I am exhausted. So this routine has made blogging feel like a chore rather than a passion.

Today I decided to stop for a few minutes to make an effort to “get back in the saddle”. It’s important to make time for things and people that are important to us, and writing about my life as a caregiver is important to me. There are so many misconceptions about having a disability that I feel I must shed light on, in an effort to help others understand how challenging it is for the individual and the caregiver, as well bringing awareness regarding the limitations society puts on people with disabilities.

As always, thanks for reading.

Back to School

Most children are getting ready to return to school or they started last week, and I have happen to have some concerns. My son is starting Kindergarten and he will be attending class for a full day rather than half a day, as he has done the past 3 years. He has special needs, so I am unsure of how he will handle the transition.

Don’t get me wrong, I have met his teachers as well as the other staff members that will be working with him, and I am pretty confident he will be well taken care of. His private duty nurse will also be accompanying him, which makes me feel more at ease. However, my son tends to have behavioral issues due to the fact that he is non-verbal and cannot express how and what he wants.

Then there is the issue with his sleeping patterns. He suffers from apnea, in addition to being visually impaired. This affects his sleeping habits – causing him to go long periods without sleep or sleep during he day and staying up at night. I just hope that I won’t be receiving frequent calls asking me to come and get him.

I pray he has a productive year, and I wish the same for all of the other students around the world, healthy and otherwise.

Goodnight 😴

2019 Charge Syndrome Conference

I am the caregiver and mother of a son that as diagnosed with Charge Syndrome shortly after his birth. Charge Sydrome is a complex genetic syndrome which occurs in 1 out every 10,000 births. This year’s National Charge conference was held August 2nd through August 5th, and fortunately my family and I were able to attend.

First off, it was great to be around parents that understood the challenges of raising a child with multiple disabilities. No one asked awkward questions or gave long stares during g-tube feedings or during sudden meltdowns, because it was all familiar. We were able to bond…to swap stories and give advice on how to help improve the situation.

The other great thing about the conference was the fact that the kids and their siblings could attend camp based on their age group. Due to the multiple medical and physical issues chargers deal with, they are often anti-social and prefer to play alone. As a parent I am concerned about my son being comfortable interacting with other children. I don’t want him to feel isolated or be teased for being different. Not to mention my daughter was able to bond with other kids her age who knew how she felt.

Last but not least, there were seminars ranging in topics related to symptoms of Charge Syndrome. Not everyone with this disorder has the same abnormalities, so it was great to be able to chose the ones that were relative. For instance, my son can be very hyperactive and exhibits aggressive behavior when he is seeking or has too much sensory input. There were speakers that specialized in that area, providing helpful information and tips on how to manage this behavior and why he behaves in this manner.

People with disabilities (and their parents) often feel isolated – like no one fully understands what it’s like to be in their position. It was a wonderful thing to be around others that could relate.

As always, thanks for taking the time to read my post.