I often say I’m a mom to miracle. My boy has survived a diagnosis which is usually dire, to say the least. This makes him a miracle. But, it also makes me a forever mom.
First Came Love
I married late in life because I found the absolute best husband for me. He was worth the wait. As most newly married couples, we started working on having a family and six months later we were celebrating a baby announcement.
Just two weeks after turning 40, my son was born. We were alternately thrilled and concerned at the same time. Instead of the usual congratulations and blue bubble gum cigars, we received words of encouragement like, “We are praying for you.” And boy did we ever need each and every prayer for our wee one.

A New Normal
Attached to a ventilator and in the hospital for six months, it dawned on us our son would bring us a very different reality. As I have heard some call it, “a new normal.” So we lived each day, focusing on that day. We daily charted his water, food and medicine intake, performed trach changes as needed and suctioned to keep his airway clear. We also gave lots of kisses, hugs, and prayers for our bundle of joy.
Were we focused on next year, the next five years or beyond? Not really. Living moment by moment, day by day better described our journey.
Now my son is eleven-years-old. He is happy, full of joy and in some ways demanding as well. We still perform trach changes and an occasional suction, but the ventilator is silent now. It’s still ready if we need it. I choose to see my glass mostly full. And the other half just part of being of being a special needs mom.

Forever Mom
Eleven years into this journey, with a healthy, thank God, little boy, and it dawns on me, I am a forever mother. My son won’t leave the roost at age eighteen like most children who enter adulthood. I don’t anticipate having empty nest syndrome. This begs another question. Will I be strong for him when he is 20, 30-years-old and beyond?
I am thankful for my son’s dwarfism. In mid-life, I can still carry, change and dress my son with ease. It helps that he is 24 inches tall and 25 pounds. That’s doable. I don’t need a lift to get him in bed, and the kitchen sink still works for bath time. Though he fits in a wheelchair, he much more delights being pushed around in his stroller. And, I can still double wrap my arms around his adorable little frame. Then he lays his head on my shoulder, and I melt.
My son still loves mommy hugs.

Future Perspective
So, I imagine my future looks more of the same. I expect Samuel will have a growth spurt like most teenagers do. That’s only 2 years away. Gulp. And then, I’ll lean on my strong 6-foot-tall husband to use his brawn to lift and carry him as he gets older.
And though I’m old enough to be Samuel’s grandmother, I trust God will give me stamina and strength to rise to the challenge. I guess it’s time to lift those weights again and hit the elliptical. Couldn’t hurt. In the meantime, I’ll focus on my daily cuddle and tickle sessions. I’ll focus on loving my son fully everyday. This brings me great joy, and somehow, I think this will keep me young. Forever young.
I look into the future and see something surprising: Hope & Joy. Click To TweetAre you a forever mom? Do you think of the future? What encourages you and gives you hope for the future?
http://mercymedical.org/rare-disease-calls-for-distant-doctors/
Medical Mercy Angels sound amazing. I’m so glad they are able to help you with vital medically needed travel. And that the therapies you receive assist you so much. Wonderful article. Blessings, Evelyn
https://themighty.com/2016/04/letter-to-cerebellar-vestibular-disorder/
Hi Fellow Mighty Writer, This is a wonderfully written article. You are positive and upbeat despite the many challenges you face. Keep writing. Keep shining. Keep sharing.
Blessings, Evelyn