As a special needs mom, we never want to talk about the hardships we experience or the exhaust we feel, because we feel guilty for complaining. I mean our children have to go through so much hardships and experience so many struggles in life, why should we complain about what we do for them?
After 20 years of being a special needs mom, I think it is good to let it out. Express your anger and fear for your child and admit the exhaustion you are enduring. We do it all because of the love we have for our child, so it is okay to feel emotions and talk about your struggles.
Here is my life as a special needs mom.
* The Future scares me
As a special needs mom, the future can be scary. What happens to our children when we get too old to care for them? What happens when we pass away? It can get a bit overwhelming when you sit and think about the future. You cannot just live day to day because planning for your child’s future is so crucial.
* Schedules change day by day
With a special needs child you cannot always have a definite schedule for your week, or make plans for activities because our kiddos get sick so quickly. I have had to cancel so many plans because Ciara suddenly became sick. Not too mention the chance of having a social life is slim.
* We have to Fight
With a special needs child you will learn to fight for your child. You have to fight Doctors to diagnose your child, or to treat your child. You have to fight insurance companies to get equipment or medicine your child needs. You have to fight for everything all while fighting your child to do these things we fight for them to be able to do.
* Complete exhaustion
There are times I am mentally and physically exhausted I just want to curl up in bed and sleep for days. After lifting Ciara all day, sometimes my body hurts so bad and tells me I cannot to this anymore. But I get up the next day ready to do it all again.
I feel sad at least once a week for the life Ciara will never have. When I watch her struggle to do simple tasks, when she tells me she wants a baby one day. She will never know a normal life and I so badly want to give her everything she desires, but there is only so much I can do.
* I thank God for her
Everyday I thank God I am able to be her mother. I thank God I am able to take care of her and give her what she needs. I thank God that I was chosen to be the mother of such an amazing person.
At the end of the day there is a lot of tears, pain and exhaustion, but it is all worth it! I know every special needs mom would agree that these special people inspire us to be better and show so much strength and courage. When I am at my weakest point, all I have to do is look at Ciara’s smile and know that this is all worth it and I wouldn’t trade her for the world.