I never dreamed that I would be a special needs Mom. I wasn’t the kind to tell people how many kids I was going to have or if I wanted a girl or a boy first. Maybe it’s the only child in me. Maybe it’s the ADD not allowing me to contemplate one thought long enough to make a plan for years down the road.
We were given a 4% chance for Parker to be born with Down syndrome. My OB looked right at me and told me those were odds that I could take to Vegas.
But I knew. Deep inside my heart I knew this little one mooning me from the ultrasound picture was carrying an extra chromosome and that my life was about to change forever. I stood at the door of the birthing room after my water broke six weeks early and very loudly made it known that anyone who had an issue with an extra chromosome might as well sit this delivery out.
What we didn’t expect were all the health issues, starting with a teeny set of lungs sticking together and setting off a chain of events that still find us battling Pulmonary Hypertention while committing each and every day to providing the best care possible for our Brave Hero.
Our family feels as though with the addition of Parker we truly hit the jackpot.
I’m into large families (six kids in all!), re-purposing, yard sailing, cooking from scratch, gardening, stocking a deep pantry, using coupons and other skills that allow us to keep a roof over our heads and the medical bills paid.
I’m all about blenderized diets.
I’m homeschooling my medically fragile child with special needs, while trying to take it one day at a time.
I’m working on this thing called faith. We all have our own gifts, and faith wasn’t one I thought to stand in line for. Instead I’m learning it through the life of a Brave Hero, one step at a time.
I’m finding my way to Weight Watchers while wondering how many points a big ‘ol Dr. Pepper over ice will cost me.
I’m working on my PTSD, trying NOT to relive the panic attack that caused my GP to send me straight to the ER. Luckily I talked him out of the ambulance he was about to call.
I try to focus on the positive, but I make no promises. What you see here is what you get. In trying to keep it real I sometimes wind up sharing more than I really should. I’m absolutely serious when I say that Parker’s life is worth living. And I will get my panties in a wad if someone chooses to throw the r-word out and then patronize as they moms explain they weren’t talking about Parker.
I’m a special needs Mom and I stand in pride with the other Moms who have learned that typical isn’t the only flavor of life worth savoring.
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Twitter: therextras
Jan 1, 11
I’m hooked here.
Some topics of my comments: taking care of Tammy and problem-solving for how to get Parker around and some sleep for Tammy.
hi!
my daughter was on a vent for the past three years and this past summer was decannulated! we went thru needing to change out her trach weekly.
i have supplies that i would happy to donate. i fell on a nasty piece of ice yesterday, and am feelin like a truck hit me today, but if i’m up to it i’d like to try and go thru the storage unit (i mean garage full of supplies). could you email me so that i can send you a list that you can get out to people? we will not want any money for these supplies, but covering shipping if possible would be appreciated! also, my husband and i own a medical supply business…it would be great to help out families that need to purchase on their own supplies and get them to them at cost + shipping if possible! god is good, and has blessed us in so many ways in our journey with jocy. our journey is on http://www.caringbridge.com and put in jocelyne fisher…
have a great great day!
lynette fisher