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Dad, Mom, and baby Meghan

Dad, Mom, and baby Meghan

Meghan through the years

Meghan's age

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Trisomy 21 trio of cuties

10 Things Every Child with Autism Wishes you knew

Sunday, October 3, 2010

31 for 21- day 3- Meghan Changed our Lives

How did having Meghan change me? You know I cannot even remember who I was before she was born, I have a vague recollection of that person, I know she was thinner, more fit, had more time to pursue hobbies and spend time eating lunch with friends...I think she spent too much time thinking of frivolous things (clothing, hair, the latest gossip) and did not take time to have many deep thoughts or conversations. She liked watching Oprah and Regis and Kelly and Entertainment Tonight, (shows I do not watch now)

How did she change our family? Having her made our lives slow down, since she was fragile at first, we could not just take her everywhere we used to go, unless she was going to a doctors appointment, she was home with me. My maternity leave was extended from 5 weeks to almost 2 1/2 months, I had to give up one job because they would not hold the classes for me any longer and would not allow Meghan to come into the classes with me, and my primary job was in jeopardy. My job as a fitness instructor used to define who I was, I was proud of what I had achieved, but even before Meghan was born, the bloom was fading on that rose. Having Meghan put my working life into perspective, it was a job, it helped us pay bills, but it no longer defined me, I was more than just a group fitness leader.

Our son Eric volunteered to drop some college courses and stay home with Meghan so I could return to work, financially it was a necessity, co-pays for all of Meghan's doctor visits were eating into our income. He was so good with her, and I felt safe leaving her with him. Meghan did not get released to be around people other than family until she was 5 months old, I was allowed to take her into my classes with me, but she was still excluded from day care, as children were/are germ carriers.

Tom was determined to come to all of Meghan's Dr appointments, at first the principal of his school was understanding, but after time went on and Meghan still needed lots of medical supervision, she no longer supported his days off and tried to forbid him to go. She began to look for reasons to find fault in his work, typical of a supervisor who wants to be rid of an employee. It became adversarial and he decided to find a new school to work for, it was hard to get later times for appointments because those filled up first, but we did the best we could. He ended up finding a new position, but I know he was happier with the younger students, and teaching middle school is always a challenge.

We are private people, in fact, besides holidays; people did not come here to visit us. We had children playing with ours of course, but my adult friends did not frequent our home, I had a social job for 25 years, having to interact with hundred's of people every day, and when I was home, I wanted it to be a haven, a place to de-stress and renew, I wanted solitude. Obviously the same held true for Tom, being with all those kids all day, peace and quiet was something he craved. Having Meghan literally forced us out of that comfort zone; We had to allow several people a week into our home weekly to get her the help she needed.
I think I am more patient with people who do things more slowly, from small children to an elderly person walking with a walker. I am more aware of people with disabilities in stores and events, I seek them out and make a point to say hello and to smile at them, I used to look away I am ashamed to say, never feeling quite comfortable, not wanting to say the wrong thing.

Socially we suffered some losses, friends we had known for years were devastated by her birth, we had to comfort them, obviously they were the ones who could not handle Meghan's extra chromosome, one by one they drifted out of our lives, it was not immediate, and it took a year or two. It hurt, it was confusing, but it was difficult to keep someone in your life that is uncomfortable around your baby. Some family seemed to drift away too, in fact, most people in our family have never met Meghan; Aunt's, Uncle's, my sisters and brothers (I have half siblings and a few never really have been involved in my life, especially since Mom and Dad died, some were hers and some were his, mostly Dad's kids ignore me LOL)...and we learned that there were reasons for every change in life, and it was time for us to find new friends to share our lives with.

Luckily we found other parents who also had children with Down syndrome, and we found support from them and they loved Meghan for who she was. The Down Syndrome Connection of Tucson was a lifeline for me, thank goodness for Kathy and her support, and for the parents who helped me through the first year (s).

I have found that it is not the person with Trisomy 21 that has issues getting by in this world, but the society into which they are born who creates the problems, the roadblocks. The misconceptions about who they are and what they can do are numerous. It is hurtful that some people are afraid of them, truly, what is so scary about a person with Ds? However Meghan was such a happy little toddler and she never even noticed how people reacted to her presence. Truly she had the most amazing laugh and her smile made the sun shine again. She loved us unconditionally, she adored her big brothers, you could tell she wanted to be like her big sister, and she changed every single one of us just by being born into our family.

When Meghan was a baby, I sometimes looked at her and saw Down syndrome; it took a while to see her as just Meghan. It was a thought that would go through my head; “She has Down syndrome” maybe a way to adjust, get used to the reality. She was just a baby like any other, she needed to be fed, changed, bathed, cuddled and loved. And Meghan adored us, every single family member shared in her adoration. She made all of us laugh with her antics, and all of us wanted to protect her.

So I learned that despite some differences, my girls are just children. Now I have three girls who have Trisomy 21, I can truly say that their behavior, besides some quirks, is exactly the same as children with 46 chromosomes. They get jealous, sad, and mad, feel pain, feel embarrassment, resentment, and every emotion everyone else has. Before Meghan came into our lives, I would not have known that, so she taught me, they all three taught me, that people are just people, despite minor differences in shape, size, color, cognitive ability, we are all members of the human race.

1 comment:

GoldenAngelsWorks said...

This was so great. I loved looking back at the photos of Meghan. They are so cute and you cannot help but smile.

Meghan was a big blessing in your life and now with the other two girls as well.... You are truly blessed. I know times are not easy but you seem to make it through each day with each one giving you the hugs and kisses you need to keep going.

Beautiful artwork featuring children

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