Down Syndrome: Nothing Down About It
We often hear there is nothing down about Down Syndrome. Lets be honest, there are many
“downs” to the diagnosis Down Syndrome.
Right of the bat I was overwhelmed with “issues” my son had. Low muscle tone, long tongue, failure to thrive, ASD and the list continues. On top of not knowing his diagnosis prenatally, I had my plate full of things I needed to watch for.
What are the
“downs” of Down Syndrome?
- Low muscle tone- delay in developmental milestones such as walking, crawling, running etc.
- Long tongue- feeding issues, speech delays
- ASD- heart failure, oxygenation issues, respiratory distress, open heart surgery.
- Failure to thrive- more calorie intake, dehydration, constipation. Possible caloric intake though peg tube or parenteral nutrition.
Ok, enough of the
“downs” of Down Syndrome. Disclosure: these are things that have happened to me personally. There are other children with Down Syndrome that have to go through so much more.
Nothing Down About It
Where does the phrase “Nothing Down About Down Syndrome,” come from? Well if it is up for interpretation I will tell you mine.
There is absolutely nothing down about it. Lets start from the beginning.
You get a prenatal diagnosis of Down Syndrome, as a mother your instinct is to continue with the pregnancy. You are strengthening your mind and you are ready to be the best mother you can be to a child that may have difficult situations. You have re-arranged your household and found support groups for this transition in your life. Is there anything down about that?
No Prenatal Diagnosis
You hold your child for the first time and your doctor tells you, “Your child has Down Syndrome.” You decide to ignore the doctor. Instead you rejoice because you finally met the baby that kicked you at night for nine months. You don’t care about the diagnosis because they are your child regardless. Is there anything down about that?
Atrial Septal Defect
The doctors say, “he/she will need open heart surgery to close the hole in his/her heart.” You start to worry. Your child comes out from a successful surgery and you are thanking God for blessing him/her with health. The recuperation process is long and difficult, but you are there watching him/her overcome the pain and waking up with a smile on their face. A few months later they are laughing and happy as if it never happened. Is there anything down about that?
Low muscle tone and long tongue. Developmental delays. Not able to feed or talk like we would like them to. Finally they say, “Ma-ma” or “Pa-Pa.” You jump up and down from excitement. They take their first steps and now they are running. They feel accomplished and you look at them with amazement. Is there anything down about that?
The world talks about Down Syndrome and they correlate that with many
“down” or negative situations. I was part of that world until my son was born; I did not think negatively but I felt uncertaint and scared.
But what is not to love about Down Syndrome?
I am a mother of an amazing warrior, who happens to have Down Syndrome. I can yell it out and say “There is nothing “down” about Down Syndrome.” Yes our children will take longer to crawl, walk and run. They will take longer to talk, sing and yell. When they reach those milestones the feeling will be breathtaking.
You become a stronger person, your family becomes closer together, your support group grows. The love for your child is a different kind of love; a love that will make those difficult situations seem small compared to the success that they will reach.