November is the beginning of Thanksgiving month.
Below is a guest post from Samuel’s mom from Miracle Mann on how she can
still be thankful even with being a special needs mom:
I’m sitting next to my son, Samuel, who is snuggly secure in his car seat. He leans to the
left as I sneak a kiss on his cheek. He smiles and leans back. I pucker again, and he
leans toward me for another kiss. I oblige and am rewarded with another brilliant
We play the game until we arrive home.
As I unbuckle him from the car seat, I’m still smiling. These are the moments that
bring me great joy. As parents, I imagine we all have those precious cherished times we
tuck in our heart.
I often hear others say they could never do what I do. The thought of raising a child
with special needs can be seen by some as a herculean task beyond what a normal
person can bear. I’m often commended for my role as a special needs mom, but here
are a few secrets I’d like to share.
Secret #1: You get used to the world of medical equipment.
Living with a child who needs a ventilator requires an understanding into the world
of medicine most of us don’t encounter. We learned to change Samuel’s trach, suction,
give manual ventilation if needed and became proficient in all the emergency equipment
required. You get used to it. The world of medical equipment and using it to keep your
child well becomes second hand. This is our new normal.
Secret #2: I believe God gave us grace and an incredible peace through it all.
The first few years of Samuel’s life were a challenge. Our son spent six months in the
hospital and returned home to 24-hour nursing care for several years.
But we took each day as it came. If we faced challenges regarding Samuel’s health, we
prayed for him to get better. That’s not to say we didn’t have hard days, but we all
have hard days, don’t we?
Secret #3: Your child will surprise you.
The respiratory therapist told me we should have a ventilator party the day my son
doesn’t need it anymore. My mind rejected the idea. Didn’t he know my son has a
condition where he’s not expected to ever come off the ventilator? Perhaps he won’t
need this life-saving equipment during the day at some point. Maybe. But to come off it
completely was incomprehensible.
My son has been bucking the odds since the moment he was born. About two years ago,
we were able to turn off the ventilator. The impossible happened. I count this as a miracle.
Secret #4: I don’t think I could raise our little guy without someone special.
I have an amazing husband. You may have heard the phrase, “God gives special children
to special people.” In the case of my husband, I agree. Early on, he understood the
medical aspects of Samuel’s challenges, from understanding the dizzying world of
positive end-expiratory pressure (PEEP) to designing an apparatus used as a reminder
to turn off the oxygen tank. And Samuel loves his daddy. They have a tender relationship
of love and respect. He almost always listens to Daddy.
Secret #5: Our days have become extremely normal.
Our son loves his daily routine and will only get upset if he’s teething or when he wants
his cereal. We have a lot of moments like the kissing game where pure joy overflows.
And though I understand there are many differences between my son and a child
without his diagnosis, we have found our happy place.
So we continue to parent our little guy who was given a “not compatible with life
diagnosis” called thanatophoric dysplasia dwarfism. We don’t know what his future
will bring, but we cherish each smile, every giggle and many milestones. And as we
continue this journey, we see the secrets that surround us and are thankful.
The post above was originally posted on The Mighty, a blog where special needs
parents can share their stories. The above post can be found by clicking here.
Follow Samuel’s journey here.