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Five Things Down Syndrome Has Taught Me

May 3, 2017

1. Patience 

Patience is a virtue that I have never really had. I hate standing in line and waiting in traffic. Nothing irks me more than slow walkers, being put on hold and basically anything else that makes me wait. I like results, and I like getting them fast. My lack of patience is probably one of my worst qualities, and one that I have had to work on the hardest over the years. Then, less than a year ago we had my son Cooper, and 12 hours later we were told that the Drs. suspected he may have Down Syndrome, but were only 50% sure. They wanted to take him for blood work to be positive. The results of the blood work were going to take a week. A week!! That was the first time my patience was tested in a possible earth-shattering way. A whole week before we would find out if our child had a developmental disability. I must say that was the longest week of my life, but it taught me patience. I had no choice but to wait, and to relax and enjoy my baby while I waited. I also spent the week watching YouTube videos and reading blogs by family members of loved ones with Down Syndrome. I tried to learn as much positives of Down Syndrome as I could. A week later when we were told by the geneticist that our beautiful child, indeed had Down Syndrome, we were ready. But next came tests, tests, and more tests. He had to get his heart, eyes, hips, and kidneys looked at. And we had to wait. Our patience was tested. Now as Cooper is almost 10 months, we are watching him grow up and work to meet his milestones. He has been doing so great, and is such a motivated child, but things that come easy to typical children, are a little harder, and take a bit more time for a child with Down Syndrome. I see his ‘typical’ peers advancing quicker than Cooper, but I realize I just need to be patient. I try not to get frustrated when we practice and practice at something, and don’t seem to make any progress. I know one day, in his own time, Cooper will be able to do all the things we work on with him. I know that this will be my future, and there is nothing wrong with that. It just means I need to slow down a little, take time to smell the roses, to enjoy and cherish every moment with him. So, in 10 months, Down Syndrome has taught me a lot of patience, and will only continue to shape me into a better, more patient person.

 

2. Inclusion 

Inclusion is so important. Whether your child is typical or has special needs, a kid needs a sense of belonging. They need to feel a sense of inclusion by their peers. I think as parents, it is very important to teach our kids to talk to the kid sitting by himself at lunch, or invite the shy kids to come play with them, or to invite the classmate with Down Syndrome or other differences to their birthday parties. Cooper is not even a year old, but I know when we were told he had Down Syndrome, one of the thoughts that immediately came to my mind was, will my kid have friends? In a way, I think it is a ridiculous thought, because who wouldn’t want to be friends with such an amazing child, but kids are sometimes afraid of different because they do not understand it. They often cling to kids just like them. Even as adults we tend to gravitate to people we understand, and who are more like us, than different. That is why we need to teach our kids at a young age that, everyone matters and everyone should be included. That differences aren’t scary, they are beautiful. At less than a year, inclusion hasn't yet been an issue. Cooper has friends with Down Syndrome and he has typical friends, and I hope he will always grow up with them by his side. I love that at a young age, kids don’t even see difference. They don’t understand it. They have pure hearts, and love their friends no matter what. I hope Coopers friends always include him, and invite him to their birthday parties, and stand up for him if a bully comes along and teases him for having Down Syndrome. Having a son with Down Syndrome has taught me to include others, to talk to those I don’t normally talk to. It has taught me to be a good example for him and others, and to hope and advocate for inclusion for my son.

 

3. Compassion

After Cooper was born, my eyes and heart were opened to have compassion and understanding for others with special needs, or families dealing with special needs. I used to work at the mall and see tons of families bring their special needs children to the mall, some with walkers, some in wheel chairs, some autistic, some nonverbal, or deaf or blind, etc. I know I would often look away if they saw me looking at them. I wasn’t staring or offended by them, or trying to judge them, but I do distinctly remember thinking to myself, I could never deal with special needs. I remember seeing countless children with behavioural issues and feeling sorry for the parents, and having pity on them. I do not know whether Cooper will have behavioural issues as he gets older, I do not know how far his speech will come along, I do not know if he will need assistance walking. However, I do know, that I would not want anyone to pity my son or feel pity when they see me with my son, no matter what. I love him, and he has enriched my life so much, and I do not wish his disability away. I accept him, extra chromosome and all. Now when I see others with special needs, I no long feel sorry for them, or their families. I feel compassion when I see them struggling, I feel understanding when I see a moms tired eyes, behind her loving actions. I don’t pretend to understand everything about them, as every special need is different, but I know they don’t want pity, they want love and acceptance. They want compassion.

 

4. Thick Skin 

Having a child with Down Syndrome taught me to be thicker skinned. I remember when we found out Cooper had Down Syndrome, 12 hours after birth, one of my thoughts was, what are people going to think? I was not only worried about what others would think of Cooper for having an extra chromosome, but also worried if people would wonder if there was something wrong with me or my husband, for having a child with special needs. But I quickly realized that there was nothing to be ashamed of, my son was perfect. I do wonder some days if people can tell that Cooper has Down Syndrome, and if they can, what do they think about him? Do they feel sorry for me? But then I think, who cares. I love him, he knows it, and that is really all that matters. He is so cute, and smiles at nearly everyone he meets, and I hope that if they can tell that he has Down Syndrome, that they realize it is not a big deal. He is just like any other baby. I am not going to lie though, I still worry what I will say to the 1st person who decides to make a purposefully rude comment about him. But I know that when that day comes, it may hurt, but it will only serve to give me thicker skin. It will make me stronger and help me to be strong for my son.

 

5 .To Advocate 

Down Syndrome has taught me to stand up for what I believe in. Better yet, who I believe in. My son. He has stirred in me, a desire to advocate for all those with Down Syndrome. He has made me stronger. I know that I need to be Coopers voice. I need to let others know that imperfection is beautiful. That differences are what makes us unique. We are all more alike than different, despite him having an extra chromosome. Down Syndrome has made me more open to reach out & talk to people, to be honest with my emotions. I want to change perspectives, and teach people to stop fearing the unknown, but rather have faith in the unknown.  Down Syndrome was not part of our expectations, but ups and downs are part of the journey, we just need to have a little faith in process. It is true for every child. Typical and Down Syndrome. Despite what others may think, Cooper having Down Syndrome is a beautiful thing in our lives, and there is nothing down about it. Down Syndrome is not Scary. It is love. It is the pure joy I see on my babies face when he sees me. It is cuddles when my baby is sleepy. It is smiles when he sees his Dad, and giggles when we tickle his tummy.  It is only 1 extra Chromosome. 47 instead of the typical 46. Down Syndrome is a Gift from God. I truly believe that babies with Down Syndrome are Angels sent from up above to teach us beautiful lessons. That is why we should advocate for them.

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