“I don’t know how you do it.”

I get those words a lot. I usually smile and reply, “You learn to deal with what you have to deal with.” That’s the truth, but there is a lot more to my truth that I don’t add. The truth in its entirety is just too much.

What I Don't Say About Being a Special Needs Mom

Holding my screaming, inconsolable son while people apply electrodes and monitors all over his head is too much.

Negotiating, convincing and sometimes fighting my toddler to sit for a tube feeding is too much.

Continually treating granulation tissue and hearing him say, “My tube hurts! I need cream on it!” is too much.

Needing to know what granulation tissue is and how to treat it is too much.

Exhausting every disciplinary option I can think of, but not getting anywhere with him is too much.

Repeatedly trying and failing to figure out an appropriate sensory diet for C’s needs is too much.

Rarely sleeping through the night because my son wakes up and needs me to lie next to him is too much.

Worrying every time he has a setback with his oral intake is too much.

Wondering if he’ll ever be able to sustain himself entirely on an oral diet is too much.

The ups and downs, the uncertainties, the medical supplies, the blends, the tube feeds, the doctor and therapy appointments…it’s all too much.

It’s too much to watch my baby boy experience all of these things in his short lifetime. This loving, funny, smart, sweet child who doesn’t deserve to experience all of these things.

Too much.

What I don’t say about being a special needs mom is that it’s made me stronger than I ever imagined I could be, stronger than I ever wanted to be. I have this beautiful little love of my life to fight for, and even when I feel like I’m barely holding everything together, there is no other option.

Nighttime cuddles with my SPD tubie.

9 thoughts on “What I Don’t Say About Being a Special Needs Mom

  1. I am very lucky to know you for one of the extremely rare moments away from this world of complete mama bear strength. You are an impressive woman.

  2. Dear Mama Jama, by the way I love that name! It’s always a challenge for me to here a young beautiful mother talk about challenges that I have endured and still going threw. But your so right on when you say ” I have know choice” parents will do what ever it takes to see there children thrive, be healthy and happy. From one mom to another with a child with special needs, I want you to know it may not be what we expected. It is the most rewarding life I could of ever imagined in the way of closeness in siblings, the love and strength your family bond will be! And for the love and compassion you all will have for others! Your a beautiful mom and you have a beautiful family! Remember when things get unbearable don’t be afraid to lean on others it’s not a weakness ……it took me a little time to learn that..lol some might say a long time……but who’s asking…..lol lol …stay strong we all will need to lean on each some point an time in our lives. God Bless you and your sweet adorable family. Julie❤️❤️❤️

    1. Your comment brought me to tears, Julie, knowing how much you and your family have gone through over the years. I love you all and am so thankful that our families are still in touch after all this time. Thank you for your support.

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