Doing Life with This Extra Little Chromosome

September 23, 2011

This week has been a good week for our family. It has been a good week for our girl with the extra chromosome.  She made 100 on her first social studies chapter test. It was over Mesopotamia, which I am pretty sure I didn’t study until 10th grade. She has always been a very good reader. Can site read anything but comprehension is a bit more of a challenge.  One IEP said, “Rachel’s comprehension is better when reading things that interest her.”  In fact it is almost grade level on those passages. The comment made me laugh because I thought “Isn’t that true for most of us?”   She struggles a bit more with comprehension but still does quite well. When I take the quizzes, I wonder if I would be reading on grade level based on these questions and answers?  She has started back to her formal dance classes and joy just spills from her when we go off to class. She simply loves to dance.  Most days she simply loves life.  This week was a good week for us.

Tinydancer
Book2

But this morning my heart is a little heavy for a few of our friends. Nothing earth-shatteringly bad has happened.  My experience in life is that it is the day-to-day “stuff” that gets in the way anyhow.  In this community of extra chromosomes, I think we have an almost symbiotic relationship.  We get so close to others and we know that while today may be a great day for us, that we may have some “issue” tomorrow.  We relate to the dreaded phone calls from the school that makes our hearts skip a beat when we see the school name on caller id.  I know that may be true for all parents, but I do think we get blindsided a bit more. Symbiotic because you hurt deeply when others struggle and we understand that it could be us.  A friend wanted me to help her with her daughter’s IEP. She has a little bit of a language barrier and that sometimes makes it more difficult to navigate the system. I felt helpless and unhelpful and knew that she just wants what’s best for her daughter. She doesn’t know exactly what is not right but she believes that her daughter is not challenged and expectations are too low. I tried to help her but in the end I felt I didn’t know quite how to help her. So I will pray for her today. Another friend is having a behavior challenge. It’s new for them and it is very difficult to find out “reality” because it is hard to decipher the story. You want to believe your own child – if only you can figure out what really happened. If only you had “an extra chromosome” interpreter.  You depend on others to tell you. They are well meaning but maybe they only saw the part where your child pushed back and your child doesn’t know how to manipulate the story to tell you it was the other kid who was taunting him. Maybe your child just pushed the other kid, but you don’t really know. And you don’t know why the behavior suddenly pops up.  Where did it come from? You feel helpless and hopeless.

Today, my heart is heavier for our friends with the babies with extra chromosomes who had heart surgery this week. For some reason, that extra copy of the 21st chromosome increases the risk of heart problems in our babies. Almost 50 percent are born with a heart problem – usually correctable with or without surgery.  Medical advances have made the surgeries almost “routine.” I say when it is your baby there is nothing “routine” about any kind of surgery.  I am thankful that the outcome will most likely be positive for these little ones. I am thankful that Rachel has no heart issues.  I am sad that their families must go through this.

So on this day, I am excited for the good week Rachel has had.  I am reminded that I am blessed beyond what I deserve.  I am a bit sad for the tough week other friends have had, are having and will have.  I understand.   It’s part of our journey, and I am thankful to have so many good souls to share in doing life with this extra little chromosome.

 

 

kb responded:
What a wonderful post today. We really are blessed. Thanks for being there for me as we go through this process. The pictures are absolutely the best! It appears that joy from dancing produces a flood. How lovely!
Doreen Coston Harris (Facebook) responded:
Doreen Coston Harris
Glad our little dancer is back to it – I know how she enjoys it!
Kimberly Young Meese (Facebook) responded:
Kimberly Young Meese
Love reading your pieces. If wasn ‘t for that extra little chromosome our oath may never have crossed! Love Rachel’s pictures!
Peggy Bergeron responded:
Your empathy and compassion for others is limitless. Rachel is so blessed also to have you as her mother!
Jawanda Mast responded:
Jawanda Mast
Thanks for reading and the posts. I just know that God has a perfect plan andmost of the people we have met on this journey have enriched our lives. There are a fair share of loons as one of my good friends says but that just makes it more of an adventure. And we have adopted Forrest Gump’s mantra ‘ never look back and say you lived no hum drum life.” Thank you Katy Rose Akins.
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