Parker’s Big Day


1005780_673962752617913_496697450_n

I knew him as ‘Parker’ since the day I found out I had a son. He was 18 weeks in utero and a radiologist told me he was perfect in every way. He was measuring exactly where he needed to, with a strongly beating heart I watched on the screen in front of me. I didn’t know about his surprise; he would keep that extra chromosome a sweetly wrapped up little secret until he was 1 hour old.

In utero, I loved every kick I could barely feel. When they concerningly tapered off in the last trimester, the tiniest of movements were counted, measured and treasured.

 

While pregnant, I had so many hopes and dreams for the son had I wanted for so long. To have him over with his teenage friends so I could cook up a storm for them. Cuddles on tap, and love so different from a daughter. Taking out the trash without asking. Remembering my birthday. Affection for his mama even when he was a grownup, because that’s what a good son does.

When ‘my son Parker’ turned into ‘my son Parker with Down syndrome’, it was overwhelming. My world spun to a new axis and abruptly stopped. It would never go back to how things were. My self identity changed. My mental fantasies of the perfect son changed to nightmares of a bedridden, ill child who had serious health issues and couldn’t speak or interact with me. I knew no better at the time.

Reality set in, and my fears were broken down one by one with research and reconstructed with an accurate picture. Still a little overwhelming, parenthood always is. But doable. I could do this! I could be the special needs mum. All of the appointments, the advocating, therapy, hunting, researching, looking for more all the time, booking activities.

I was that mum, like all of us, trying to be perfect and do it all, and I looked at my son daily and loved him and waited for each new milestone, however tiny, with bated breath. Like any parent.

dsdfsd

I looked at him and I would see his almond eyes needing an ophthalmologist, and his lowset tiny ears. His posture, and crawling gait. My newly trained mind would assess the next therapy need and order of priority I could afford specialists in. Thyroid? What the hell is Reverse T3? Are the studies into human growth hormone relevant? Testosterone treatments? TML? Blood tests for leukemia? Orchidopexies. Adenoids. Obstructive apnea, central apnea, heart defects, laryngomalacia, tracheomalacia, Alzheimers, oxygen tanks, stickers for oxygen cannulas. CPAP. Petichiae. Oh, this is the tiniest, tiniest sliver of a fraction of what exists in my Google search history. I researched all of it. Some relevant, some not.

 

10730939_935941163086736_2405610143235666855_n

Then I slowly stopped looking at my son and seeing Down syndrome.

I started seeing a little shining personality between those two perfect little ears.

I saw him wiggle and dance and cry and tantrum and say ‘mum’, and ‘no’ to EVERYTHING, and laugh at his sister, and I realised that Parker is Parker. That is all.

That radiologist was right, at my 18 week scan! Parker IS perfect in every way.

No matter what I research, he won’t change.

His needs are the same and I can take a day off and the world won’t stop spinning and his medical team won’t drop off the face of the planet.

 

It’s one thing to always tell the world to treat your son like a person first.

It’s another to take a deep, deep breath tonight, sit on the floor, and play. Just for the sake of it, and because that’s what you do when you have a divine little 18 month old toddler who wants all of your attention, all of the time.
Not for gross motor, fine motor, vision therapy, integrating different sensory activities, but just hand him a toy and watch. Stroke his hair and read him a book and tell him he’s doing great. Dance to his favourite song, and know he’s loving it for the tunes and not for the vestibular stimulation.

 

 

Then I cuddled him tonight, and gave him a bedtime bottle, and put him in bed. Because we have surgery at the Mater Hospital tomorrow, and it’s a big day.

Follow Parker on Facebook here.

10574394_10152314125229372_1653694722827377941_n


5 comments
anonda - April 5, 2015

Thank you for posting this! You’re so real!

Reply
Liz A - October 24, 2014

Found your blog while browsing Facebook. I have a son who has Down Syndrome as well. He is now turning 14 months on the 29th. When I learned that he has DS, I feared the unknown. I, too, researched and read everything I can find online to the point that I was feeling all depressed with everything I found. I experienced the same fears, and if I will be honest, I still think of all the things that can go wrong every now and then but I try to clear them off my head. I now enjoy every moment I spend with my son and celebrate all his milestones no matter how small it seems to others. For me, every milestone hit is something worth celebrating. Glad to have found your blog. 🙂

Reply
bob coombs. - July 31, 2014

I am not a religious person and if you are I hope it gives you strength. One of my favorite people has DS and it is such a lovely feeling when he slips his little hand in mine and we walk. His Mother and Father are friends from Denmark so we have a further communication problem but his loving nature shines through. Enjoy your son as I am sure he will enjoy you his mother.
Regards Bob Coombs.

Reply
Edie - July 9, 2014

My son is 22, love of my life.

Reply
Julie Holliday - July 7, 2014

Prayers for Parker and your family! I saw your post on I Run 4. My son is 15 years old and has Down Syndrome. He is a gift and I am so thankful to be part of his world! I will be honest there are still days I see his Down Syndrome first but they are few and become farther and farther apart. It happens mostly when I realize something he is missing because others see only his DS first and that makes me sad. Chance just learned to ride a two wheel bike, loves school and sports, and is a wonderful uncle to his nieces! Once again prayers for Parker and your family and the doctors for things to go well and be successful! Julie Holiday and son, Chance

Reply
Click here to add a comment

Leave a comment: