All posts for the month October, 2014

To the Mum in the UK and to All New Moms with a Child with Down Syndrome

Published October 25, 2014 by megchristo

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First off let me address the mother in the UK whose adult son has Down syndrome.  Your article broke my heart.  To hear another mother albeit from another generation wish her son with Down syndrome had never been born left my heart hurting and my head spinning with confusion and disbelief.  At first I thought the article had to be fabricated.  No one who has had a child with Down syndrome could possibly say these things because they know what an awesome gift they are to their families.  There was no possible way that a mother really felt this way.  Then I looked at my adopted son Bo, and realized that times and cultures are different.  In today’s time does it have to be that way?  Is it too late for you to enjoy your son in his adulthood?  Is it to late for him to feel appreciated for the person he is vs the person he isn’t?  Is it too late for your community and family to rally around him and let him feel what it is like to be fully loved and cherished?  I truly hope not.  I will keep you and your son in my thoughts, and hope and pray that it is not too late for any of you.

To any new mother or expectant mother of a child with Down syndrome, please do not take what this mother wrote as universal truth.  I must assume it is her truth, but believe me when I say she is by far in the extreme minority.  The times we are raising our children in are different.  Please also listen to my truth, which I believe is more the norm this day and age.  My sons are not anchors to be drug through this life weighing me down. They are sails that help guide my ship on this journey of life. My sons go to public school.  They are in the typical classroom 90% of the time.  They have friends that have an extra chromosome and have friends that just have 46 chromosomes.  Carsten is on the little league team for Johnston.  They go on vacations with us everywhere…Disney, Hawaii, Mt. Rushmore, China.  We have no issues with them travelling.  In fact, they are our best travellers.  Both of them talk, sing, dance, play, run, climb, hug, laugh, love, and live. I think if you talk to any of my fellow “sister mothers” at GiGi’s Playhouse they would all say the same thing.  Our children have given us all so much.  It’s hard for outsiders to understand, and I think that’s why we like to hang around each other so much.  We get it, and we are all passionate advocates for our beloved children.  Perhaps that is also a sign of how things have changed.  We truly have a community.  Just today a bunch of us families gathered together to celebrate Halloween at GiGi’s Playhouse.  Our kiddos always had a great time, and talking with other “sister mothers” strengthens our soul.  We get each other.  When we talked about the article the mother from the UK wrote, we all shook our heads in confusion.  You see our children are not burdens to us.  They are our gifts, our sunshines, our angels, our loves, our children….just like all of our children are.  Do we have challenges?  Of course!  If you have parented any child, you know that you will have challenges.  The biggest differences are that our challenges are a little more anticipated, which can cause unnecessary anxiety.

Please know that our lives are good.  Our lives are rich.  Our lives are fun.  Our lives are very normal.

How I Wish It Would Have Gone

Published October 2, 2014 by megchristo

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Last night I was having a great conversation with a good friend and colleague of mine. She is currently in the process of getting her doctorate degree, and is taking an ethics class. Last week their topic of discussion was on the “ethics” behind terminating a pregnancy when the parents are told their baby has Down syndrome. While I try not to get too emotionally charged about this issue because I know it is a deeply personal decision, I do have a strong opinion that the parents should be given far and balanced information. For example, I don’t think it is right for the physician delivering the news to assume that the parents’ decision will be to terminate. I also do not feel it is “ethical” to give the parents only the scary medical, worse case scenario information without the other side of the story. The other side of the story needs to be told from the perspective of those of us actually living the life. Yes it may seem scary or overwhelming to imagine your life with a child with Down syndrome if your only thinking of the possible health issues, the time he will spend in therapies, how society will accept or not accept your child, and what your other children will have to face having a sibling with Down syndrome. In honesty, these were all things that came crashing into my world when the doctors told me they believed Carsten had Down syndrome 10 hours after he was born. I can now tell you that nearly all of those thoughts and worries have not manifested themselves in reality. As I have said before, fear is dirty liar. Don’t believe fear. Look for the light. In the light, you will find the truth. Do we have hurdles and stress? Absolutely!!!!! The truth is the positive far outweighs the hurdles and stress. It isn’t even close.

So after talking to my friend about my opinions on the topic, she asked how I wished the doctors had told me. After some further contemplation, here is how it went vs how I wish it would have gone.  Take a journey with me into my fantasy of how I wish it would have gone.

How it went: Ten hours after Carsten was born while I was holding our precious new baby 7 doctors (a mix of attendings, residents, and medical students) filed into my hospital room. MJ was sitting next to my bed on the left. They entered silently and very sombrely.

How I wish it would have gone: I wish only two physicians had entered the room. I don’t really care which two, but I feel two could have done the job. I wish they had entered with smiles and happiness. For heaven’s sake I just had a baby….let’s be happy. I wish they would have come over, acknowledged Carsten, and congratulated MJ and me. I wish they would have introduced themselves to us.

How it went: With tears in her eyes, the first attending physician asked if, “anyone had talked with us about the concerns they have about our baby.” After shaking my head no, she says now crying, “your baby has a lot of the markers of a child with Down syndrome.” Then she lists a few of the physical signs that Carsten had.

How I wish it would have gone: I wish she would have:
A. Not cried and instead actually smiled sweetly
B. Used Carsten’s name as the birth certificate had already been filled out and it was official
C. Intermingled some positive words in with her clinical observations. Such as, “see how it looks like he has fireworks going off in his eyes? So beautiful isn’t it?” Really his eyes are so beautiful, and it does look like fireworks are going off in his eyes.

How it went: When I asked what does this mean, the next attending started listing off all of the possible scary medical things that can accompany Down syndrome. Some I needed to know in that moment, but most I didn’t. She started the list by saying “mental retardation.”

How I wish it would have gone: “Individuals with Down syndrome do have developmental delays both physically and cognitively. While intellectual disabilities and delays are a reality, that does not define who they are as people. Carsten will learn to read, ride a bike, and be potty trained. He will do these things on Carsten’s time table, and I don’t know today what that will be. Only Carsten knows. He will have close, loving relationships with his family and friends.  When looking at the impact that individuals with Down syndrome have on their families, there is a research study that was led by Dr. Brian Skotko. Dr Skotko is a geneticist and Co-Director of the Down Syndrome Program at Massachusetts General Hospital, and happens to have a sister with Down syndrome. In his research he found that 99% of parents said they love their child with Down syndrome. I think if you surveyed a group of parents of teenagers you would find a rate much lower than that. (LOL! I don’t think most parents would appreciate humor in this moment, but I would have) He also found that 97% of brothers/sisters, ages 9-11, said they love their sibling. Individuals with DS are living full, happy lives. The important things are to set your expectations high, and most of all love your new baby. That’s really all you need to focus on right now just like ever other new parent on this floor. There are many resources available in the community. I will leave you information about a local group….(insert the blank….now of course I would love for them to give out information about our GiGi’s Playhouse and hand them the binders and book we have left all of the local hospitals.)” Then I wish they would have asked if we had question. Smiled and congratulated us again on our beautiful baby because honestly he looked like a cherub….so cute! 😉

So that’s how I wish it would have gone. I am sure every parent whether they received the news prenatally or after their child’s birth have a movie script like this one. The way they wish it would have gone. This is just mine. I really think it would have made a huge difference, and saved MJ and I a lot of unnecessary tears.  I think this discussion would have shown us the light instead of shrouding our minds in the darkness.