A Day With A Special Needs Mom

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I am a special needs mom to a beautiful and courageous 18 year old daughter.

She is the light of my life, and pushes me to never quit. She pushes  through so much with a smile on her face, so why would I ever have the nerve to feel sorry for myself or feel sad about life. Well it happens…sometimes through the daily life of taking care of a disabled child, I get exhausted and start to feel that this isn’t how life was supposed to be for us. She was supposed to be dating, going to college, and walking. And yet her life is limited to a wheelchair. 

As a special needs mom you get used to not having your own life and a social life is non-existing. Sometimes I feel as if my life is limited to only being her mother because it is a 24-hour, 7 day a week job. The people who are in my life start to give up on me because of the tenth time I had to cancel lunch dates or after not getting a text message back after a few days. I would love to have a social life but she comes first and taking care of her, no matter the hardship, is definitely worth it. 

Not everyday is the same in my chaotic world. Some moms have it totally together and are superheroes when it comes to taking care of their special needs children. Yes, some have more than one! As for me, I struggle to remember doctor appointments and sometimes write down the wrong times. I also show up to the wrong doctor on the wrong day.

 I am a hot mess, but I take care of what needs to be taken care of and make sure my daughter has the best life possible. I make sure every prescription she needs is refilled and picked up from the pharmacy before she runs out. I have to remember to charge her wheelchair and communication device daily. Of coarse there is bath time, therapy and days where I feel like I am on the phone for a lifetime making doctor appointments or ordering health supplies. I spend too much time having to fight for her, which is sad that as special needs moms we have to learn to fight for our children. I have driven to Fort Worth to Cooks Children Hospital more times than I can remember, and have sat in the Emergency room with my daughter more times than I want to remember. At least once a day I worry about her future, and feel sad when I see her struggle. And at least once a day I see her strength and I find my strength to keep going another day on this journey with her. 

Being a special needs mom has is difficulties but is also very rewarding. I know I wouldn’t have the strength I have now and I cannot imagine my life without my daughter. In a perfect world I would love for her to be completely healed and have a normal life, but for me I am just fine with taking care of her and making sure her life is the best it can be. I will still have days when I am exhausted and start the “why me”, but one smile from my precious daughter changes the sad “why me” to “why would God trust me with this precious gift”.

 

2 COMMENTS

  1. Hi Jennifer! You are an AMAZING woman and I really appreciate your blog post. Ciara made such an incredible impact on me when I first met her (at Elite Therapy Center) and I know her strength and beauty is a gift from her Momma! I commit to prayers and support in your journey of care (for your WHOLE crew) and I thank you for the blessings you have brought to my personal life with your attitude, perspective, and grace in all you do.

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