On most day’s, I don’t wear high heels, have my hair perfectly in place or have my make up on. On the contrary, I wear stretch pants, and tennis shoes, strands of hair wildly break loose from my pony tail, and I have not a stitch of makeup on to mask my features.
You may get the idea from this description, that I am a stay at home mom, otherwise known as a SAHM. And you would be right. In actuality, I am a SAHSNM (my acronym). Decoded, this stands for Stay At Home Special Needs Mom. We face extraordinary challenges. Not only do we deal with the everyday issues life brings, but we manage our children’s unique medical needs, all the while trying to keep our sanity.
The journey we special moms face can be a lonely one. Though I live in a major metropolitan city like Tampa, I don’t have any friends locally whose children have a trach and a feeding tube. My son, Samuel, has both and formerly needed a ventilator to survive.
I remember the first time I met another child who had a feeding tube. We were in Orlando experiencing the trip of a lifetime given to us by the Make-A-Wish Foundation. At lunch one day, I met a boy named Sam. When Sam found out my son had a feeding tube, he lifted his shirt so I could see his G-tube. I stared at him, stunned. My son was not the only boy with this tube. Yes, I knew other children had this device, but seeing Sam, in person, facing a similar challenge, opened my eyes.
Another family we met had a non-verbal son in a wheelchair who had travelled from Germany to receive his wish. He also needed a ventilator to breathe. I thought my son was the only one on a ventilator staying at Give Kids The World Village in Orlando.
Meeting these families made me realize I wasn’t alone in this special needs journey with my child. The feeling of isolation, of not having anyone who understands takes its toll. Having someone who can relate, who can hold your hand (in person or virtually), who can listen and offer advice is invaluable.
Our trip to Orlando happened around the time Facebook was gaining popularity. This platform, through the countless groups offered, makes connecting with others facing similar circumstances quick and easy. Type your child’s diagnosis, and chances are you will find a support group in seconds. Having a group where you can ask any question and receive an answer in seconds is a blessing.
In this age of technology, we don’t have to feel isolated or alone. Like the old AT&T commercial once said, “Reach out and touch someone.” You will be glad you did.
10 Groups For Special Needs Moms:
Feeding Tube Awareness:
Kids with Vents:
Medically Fragile & Special Needs Support Group:
Moms of Trach Babies Group:
Special moms of special needs kids, advice and tips:
Special Needs Moms Of South Tampa:
Special Needs Parenting Florida:
Special Needs Parents Support Group:
Parents With Special Needs Children Support Group:
Trach mommies, Trach babies & Trach buddies!:
In these groups, you will find others who may not look like they stepped out of a fashion magazine, but they will be able to share the ins and outs of being a special needs mom. And their advice is priceless.