My Life With Micah

My Life with Micah….

Beautiful Micah

Beautiful Micah

I was 27 years old when I found out I was pregnant for the 3rd   time.  I had my  daughter who was 6, and I had just had a  miscarriage.  My doctor informed me,  after a simple blood test,  when I was 16 weeks pregnant that there was a 1 in 26  chance  my baby was going to have Down Syndrome.  First I was in  denial.  I  thought, “O, well, that is not good enough odds.    Maybe the baby won’t have it.”    Then reality sat in.  My baby  probably was going to have Down syndrome.  I kept  thinking,  you never know…maybe not.   I was crushed.  I didn’t  understand.  How  could this happen to a young, healthy  person?  What did I do wrong? Well now  looking back, I think,  what did I do right?   I started researching and buying books  to try to learn about what I was about to go though. Little did I  know at the time I  was about to become an educator and an  advocate.

During a routine ultrasound at 34 weeks pregnant they found out that Micah had a  heart condition and they told me to go to the hospital right away.  They needed to  deliver him to see how bad his heart condition actually was.  I was so nervous.  My life was about to change.  I was going to find out if I was having a baby boy with special needs.  What a terrifying thought it was at the time.  He was born at 4lbs 9oz on June 14th 2006.  Once they took him out and lifted him up for me to see, my heart sank.  I knew officially my son had Down syndrome.  I could just tell by looking at him.  I didn’t even need to wait on a genetics test. My idea of my “perfect” son was gone.  Or so I had thought.

It was such a trying time.  Micah spent the first 2 weeks of his life in the hospital.   While in the hospital they diagnosed his heart condition as AV Canal defect.  AV canal is very common among children with Down syndrome.   (Holes in the heart)  They said that he could wait until he was older and stronger to have the open-heart surgery.  He also had transient leukemia.  (That is where it appears that there is leukemia present, but it usually goes away.)  What?  Now you are telling me that my son now could have cancer?  He had to go to the oncology office every week, then every month to get blood checks to make sure that the leukemia was going to go away.   After about 3 months of blood tests, it had gone away.

This is where our “new normal” began.  Micah ended up needing to have open-heart surgery earlier than expected.  He was 3 ½ months old when they noticed that the heart problem started affecting his lungs.  They needed to do surgery to fix the problem.  They did the surgery October 3rd, 2006.  He only spent 7 days in the hospital.  He now visits cardiology once a year just to make sure his heart is still doing well.

Now it was time for the therapies and specialist visits to start.  Micah started Occupational Therapy as soon as he was cleared by cardiology.  (He was about 4mths old)  He started speech therapy about 1 year old.  By this point I am realizing that Micah may need extra help and may take a little longer to learn things.  But that he will get it.  It just takes A LOT of patience.  I am also realizing that I have a “baby” much longer.   My daughter started to wonder why Micah is getting all the attention.  Why does he go to the Dr all the time?  I had to tell my 6 year old that her brother has Down syndrome.  Would she understand?  I bought her books, and just had to explain to her in 6-year-old terms that her brother just needed extra help to learn some things.  She took it way better than I did.  It’s amazing how kids just soak things up and take them much better than you think.

Micah has his yearly appointments with the eye doctor.  So far no glasses are needed but he said that he will need them eventually.  In March of 2007 Micah got tubes placed in his ears.  This was a proactive decision on my part.  Children with Down syndrome typically have smaller ear canals.  Therefore, Micah was having trouble hearing due to fluid build up in his ears.  If you can’t hear, you can’t speak correctly.  I wanted Micah to have every chance to be able to speak as clearly as possible.

 

Yet again in April of 2007 we found out we were expecting another baby.  I have to admit, I was a little scared.  I was not scared about having another child with Down syndrome.  I was worried could I give them both the attention that they really needed?  Was I a good enough mother to be able to do that?  Once you have a baby with Down syndrome then you have a 1 in 100 chance of having another child with Down syndrome.  No matter your age or race.

Days after finding out that I was pregnant. I found out that I was pregnant with twins.  Needless to say, I lost one of the twins early on in pregnancy.  I still wonder if that baby had Down syndrome.  Is that why I lost 2 babies?  Did my body reject those babies because they had chromosome abnormalities?

The worst day in our lives was about to happen.  It was one of those days where you never forget what you were wearing, what time it was, you remember every detail.  November 6th 2007 my precious, innocent 16 month old son was diagnosed with Acute Myelogenous Leukemia.  It was the most awful news a parent could ever hear.  I was about 7months pregnant at this time.  I think that is what helped me hold it together.  I knew I had no choice but to take care of my body because of the new baby.

Micah was admitted to the hospital that day.  By the 9th of November he had his broviac (central line) placed and received his first chemo for 4 days and had chemo put directly into his spine.  The doctors kept telling us that children with Down syndrome have a higher survival rate than “typical” children.  What?  The same chromosome that caused him to develop leukemia is also going to help him fight it?   Micah did pretty well with his therapy.  His protocol was a 6 month treatment plan.  Micah was in the hospital about 6 months out of the 7 ½ he was on treatment.  He was known as the “Mayor of 2 Southwest”.  That is the cancer floor at the hospital he was being treated at.

Micah is such a fighter.  He was always waving, blowing kisses, and yelling to anyone that passed by his room!   All the nurses, doctors, and patients fell in love with Micah.   They were all so amazed by his spirit.  Micah learned a lot in the hospital.  He learned to like to watch TV, because, hey what else could he do?  He learned to walk there too.  He was still receiving speech and occupational therapy while in the hospital.  They couldn’t believe how good he was doing.  Usually health issues really delays development.  I would say it helped Micah.  It gave him one on one attention all day, everyday.

Micah ended his treatment in complete remission!  He has monthly blood tests to check all of his counts.  The doctors tell me that a child with both AML and Down syndrome have about a 10 – 30% chance of the leukemia returning.  Considering “typical” children’s numbers those numbers are relatively low.

I try to set out to educate people.  My son needs an advocate.  People with Down syndrome can live normal lives.  They are just like us “normal” people.  They live, love, laugh.  They lack that mean spirit that we have.  How wonderful would the world be if there were more Micah’s out there?  It never ceases to amaze me the ignorance of people.  People always make ignorant comments.  I really wish people would stop saying they are sorry when I mention that Micah has DS.  Sorry?  Sorry for what?  My son is wonderful.  He is so loving and caring.  Everyone that comes in contact with Micah realizes what a true blessing he really is.  If someone said to me, “We have a cure for Down syndrome!”  I would tell them, thanks but no thanks.  I realize now that it isn’t the diagnosis of Down syndrome that is the hard part to live with.  It is the health problems that I would change.  Down syndrome is just something that is a part of him.  He isn’t “Downs” or a “Down’s baby”.  He has Down syndrome.  Micah, is.. Micah.

We are now living our “new normal”.  What is normal anyway?  Who says anyone is normal?  In our own way, we are all normal.  I wouldn’t change our “normal” for anything.   Micah is still here and that is what’s most important.

Angela Albonico   My blog  www.awarenessismyjob.com

Down Syndrome Info

The organization that is great for researching Down Syndrome is www.ndss.org  They have a lot of information that will help you in understanding Down Syndrome.

Also, you might want to check out http://www.worlddownsyndromeday.org/

QUICK TRUTHS AND MYTHS ABOUT DOWN SYNDROME
Myth: Down syndrome is a rare genetic disorder.

Truth: Down syndrome is the most commonly occurring genetic condition. One in every 733 live births is a child with Down syndrome, representing approximately 5,000 births per year in the United States alone. Today, more than 400,000 people in the United States have Down syndrome.

Myth: People with Down syndrome have a short life span.

Truth: Life expectancy for individuals with Down syndrome has increased dramatically in recent years, with the average life expectancy approaching that of peers without Down syndrome.

Myth: Most children with Down syndrome are born to older parents.

Truth: Most children with Down syndrome are born to women younger than 35-years-old simply because younger women have more children. However, the incidence of births of children with Down syndrome increases with the age of the mother.

Myth: People with Down syndrome are severely “retarded.”

Truth: Most people with Down syndrome have IQs that fall in the mild to moderate range of intellectual disability (formerly known as “retardation”). Children with Down syndrome fully participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome.

Myth: Most people with Down syndrome are institutionalized.

Truth: Today people with Down syndrome live at home with their families and are active participants in the educational, vocational, social, and recreational activities of the community. They are integrated into the regular education system and take part in sports, camping, music, art programs and all the other activities of their communities. People with Down syndrome are valued members of their families and their communities, contributing to society in a variety of ways.

Myth: Parents will not find community support in bringing up their child with Down syndrome.

Truth: In almost every community of the United States there are parent support groups and other community organizations directly involved in providing services to families of individuals with Down syndrome.

Myth: Children with Down syndrome must be placed in segregated special education programs.

Truth: Children with Down syndrome have been included in regular academic classrooms in schools across the country. In some instances they are integrated into specific courses, while in other situations students are fully included in the regular classroom for all subjects. The current trend in education is for full inclusion in the social and educational life of the community. Increasingly, individuals with Down syndrome graduate from high school with regular diplomas, participate in post-secondary academic and college experiences and, in some cases, receive college degrees.

Myth: Adults with Down syndrome are unemployable.

Truth: Businesses are seeking young adults with Down syndrome for a variety of positions. They are being employed in small- and medium-sized offices: by banks, corporations, nursing homes, hotels and restaurants. They work in the music and entertainment industry, in clerical positions, childcare, the sports field and in the computer industry. People with Down syndrome bring to their jobs enthusiasm, reliability and dedication.

Myth: People with Down syndrome are always happy.

Truth: People with Down syndrome have feelings just like everyone else in the population. They experience the full range of emotions. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior.  They have the same emotions as “typical” people.

Myth: Adults with Down syndrome are unable to form close interpersonal relationships leading to marriage.

Truth: People with Down syndrome date, socialize, form ongoing relationships and marry.

 

Myth: Down syndrome can never be cured.

Truth: Research on Down syndrome is making great strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome. Scientists now feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.

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