Thursday, January 12, 2017

The Struggle is Real

At my regular checkup this week at my OBGYN doctor, I had the midwife in the group who was at the hospital with us when Colin was born. No matter how much time has passed or the details that have filled my life since then, I can still remember everything vividly that transpired the day he was born. We spent some time discussing that day and how much has changed since then while looking through pictures of Colin, Kailey and Cody.

Throughout the pregnancy, Chris and I had prepared ourselves to be first time parents but were not prepared for all of the "extra" that would come with Colin's diagnosis of Down Syndrome. There has always been something to worry about and back then it was essentials of life; maintaining his body temperature, eating enough and ruling out any major health complications that he could have been born with. When we got through those humps, then it was worrying about developmental milestones like when he would track toys with his eyes, sit up, crawl, walk, play with toys appropriately, have enough communication to socialize, learn the alphabet and counting.

In the school years, we've been worrying about things like making sure he has appropriate behavior, constantly worrying about academics in all areas, potty training, keeping him involved in activities that are highly motivating, and the glaringly obvious stressor in educating Colin in an inclusive environment. We work through sensory issues, anxieties, physical challenges, minor health issues, and appropriate behavior on a daily basis. Being a parent of a child with special needs is different than being a parent to a child without; this I know because I am both. Since that first day, it has always been a steady stream of people giving us information about Colin that always leaves us feeling uncomfortable from doctors, nurses, therapists of all types, teachers, bus drivers, paraprofessionals, etc. Imagine what it would feel like to always be reminded of the daily struggle by highlighting the things that just aren't going perfectly. That in itself is stressful walking the line between what is a struggle due to Down Syndrome and what is him just being a 7 year old little boy. Chris and I can understand that this information is meant to be helpful but it is always a constant onslaught of "what  needs to be fixed".

Life with Colin is really challenging in that we work really hard to maintain and improve ALL aspects of his life. We want him to be the most independent and successful little person (and eventually big person!) that he can be. This can feel overwhelming at times because he needs a different kind of attention than Kailey and Cody need. There is always the communication with school and the time spent maintaining and practicing skills (homework and his extra practice takes a long time), problem solving on how to help the bus driver (he wants to be social but needs reminder on appropriate socialization/following rules), and our list goes on.

Identifying and talking about the struggle does not, however, diminish how rewarding our life is with Colin. We feed off of the positives we do get from all of those professionals I listed before and keep our eyes open to all of the ways in which we see Colin grow and make progress. There is nothing I love more than sitting with him each night and listening to him read. I am in awe each night that he is reading so well. Everyone that has helped Colin get to THIS point should be so proud of what they have helped him to accomplish.

He has come so far and Chris and I are so proud of him for how much progress he has made in life. He's not the little baby who struggled to drink 2 oz. of formula and keep his body temperature up all of those years ago but rather, a determined little boy who makes progress every no day no matter how big or small.

I thank God every day for giving us this gift; he's so worth the struggle to help him become the best he can be.

1 comment:

AEP said...

And you do a wonderful job. You can see it just in pictures of Colin. He is a fabulous little boy and I am glad that Robert was able to spend a few daycare years with him. Hugs to you all!