I took the day in with both joy and sadness. I feel like I have aged about 10 years in these past 3! You never dream on the day you give birth to your new little life that at age three, he would only have slept through the night a handful of times, that he would not be self feeding or dressing, or sitting on his own. That you would be looking at pushchairs, walkers, and assistive seating.
I watch Gunnar grow, 7 1/2 months now, and see how development is fun! Full of exploring with his hands, feet, and mouth. I see him move into tripod stance with such ease and bear weight on his arms. Amazing! He is starting to eat soft chunks of fruits and he doesn't gag!
He is smiley and giggly, as every baby should be.
Roa was not so fortunate in his babyhood. He cried more than he smiled. He felt discomfort more than he felt joy.
It is those memories that make me so melancholy. Motherhood was so stressful and sad with Baby Roa. Motherhood with Baby Gunnar is amazing!
As a parent, you want THE WORLD for your child! When he struggles throught it, you search for answers of how to heal his pain. Until cerebral palsy has a cure... until Roa is able to tell us what works for him to help bring independence and joy,... we will keep searching.
It is a timely, expensive search...this mission of moving forward in the land of CP. We do not receive financial aid of any sort due to our income and Roa's level of need. We get some guidance about equipment and treatments from his assorted therapists, doctors, and specialists, but even they are not up to date on all the chairs, alternative methods, walkers, speech tools,...etc that are out there. We spend spare time searching... my Knowledge Quest, I refer to it as. We read, we inquire, we pray. Man do we pray! Sadly, we sometimes doubt that God is listening...
We budget, we save, we forego family vacations and extra "things" for ourselves to pay for equipment, toys, aides, therapies, vitamins,... that just might work for Roa... and sometimes they don't.
We thank you, family and friends that celebrated Roa's birthday through gifts of money or toys that just might work for Roa. We thank you even more for the support that you might have given us through the past three years. Roa is stronger because of you lifting us up along with him.
My main message to you today is this-
EVERY DAY is a test in strength and faith for those of us who struggle with a disability.
EVERY DAY is a new lesson in grief for what might have been.
EVERY DAY our hearts yearn for an answer. a cure. some grace from above.
So Three years later,
DO NOT FORGET about us and our daily struggle. BE our shoulder to lean on. Our voice in prayer when we are discouraged. Be our hope and our faith when we cry out for answers.
We need you still today. Three years later. We still fight.