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To my son on his 24th Birthday

I still vividly remember that cold January morning when my life changed forever. My third child was to be born. I already had two daughters, aged 5 and 3, and this was to be the perfect ending to the family I always wished for.

Aside from nine months of nausea and vomiting my pregnancy had progressed without any problems, so there was no reason to suspect anything might be wrong. After all, that only happened to other people. When my son Erik was finally born that day I was ecstatic. I had, what seemed to be, a strong and healthy little boy. Little did I know then, that over the next 48 hours my world would slowly crumble and fall apart.  

Two days after my son's birth I was abruptly informed that he not only had a heart defect, which required surgery before his first birthday, but that he also had Down Syndrome. Over the next few days and weeks I went through a wide range of different emotions. I remember going from being completely in love with my baby to asking "why me?" to total denial more than three times in the same day.  

Luckily I had a lot of support from family and friends without which I probably would not have survived the following months. Erik had an AVSD (atrioventricular septal defect) and had open-heart surgery when he was six months old. Although he recovered very quickly, it was a very traumatic experience for my family, as it meant leaving my daughters for ten days while travelling out of town for the surgery.  

With that part behind me, I now faced the other part of the diagnosis: Down Syndrome. The knowledge I had of it was very limited and the information I received was outdated and mostly discouraging. I often wondered if I would be strong enough to deal with this, to raise a handicapped child. What would the future hold for Erik and for me?

There were endless doctor's visits, trips out of town to see a cardiologist, numerous blood tests and sessions with Physio-, Occupational- and Speech Therapists that I did not want to go to. It was all so incredibly overwhelming. I remember wanting to just retreat into my own little world, to take care of my baby, to not see anyone and to pretend that everything was alright.  

I began resenting women who had healthy children and every time someone in my family or circle of friends had a baby, I was in mourning for the child I had dreamed of and never had.  

Erik continued to thrive and made tiny advances. When his first birthday came I spent the entire day crying and reliving the day of his birth over and over again. It should have been a happy day for me but it was not, as I was once again reminded of what could have been. I remembered things my girls were able to do on their first birthday and Erik wasn't even coming close in comparison.  

When he finally started walking at the age of 21 months, it was a big accomplishment and I was very pleased. I think that was around the same time that the way I felt and thought about my son really began to change. His second birthday was coming closer and I didn't want to spend it like I had the first one. I wanted it to be a celebration of Erik's life. I didn't want to be sad all day, so we invited some of our friends and had a party with balloons and cake and ice cream. It was a wonderful day!

That's when I realized I had spent almost two years feeling sorry for myself, being resentful and bitter, forgetting in the process what it was really all about. It wasn't about me at all. It was all about an adorable little boy who wanted to love, be loved and have fun growing up. For the past months all I had seen was Down Syndrome and all the problems that came with it. Now I was finally beginning to see Erik.

My son has grown into a young man. Over the years we have added Type 1 Diabetes (that being the biggest issue now, as he doesn't have the cognitive abilities to deal with blood sugar and insulin management) and Celiac Disease to his list of medical issues. It hasn't always been easy but I have, over the years, discovered a new love for my son. I love him for who he is - a kind, caring and funny young man who gets excited about the simplest things in life and always takes time to "smell the roses".

He has graduated from High School and is now at a Community Access day program for people with disabilities where he is currently working on job training and workplace readiness. He has found a special place in my family and in my heart. Not only has he become a big part of my life - he is my life, just as my daughters are. He has been an incredible little brother to his two older sisters and is also a fun and proud uncle to my 4 year old granddaughter.

As we recently celebrated his 24th Birthday, I found myself getting excited about planning that day for him. Long gone are the sadness and the bitterness. I stopped mourning the son I didn't have long ago and I now appreciate the son I do have.  

He has made me discover an inner strength I never knew I possessed. He has taught me not to take things for granted and to be grateful for even the smallest blessings. I still occasionally have moments when I wonder what he might have been like had he not been born with Down Syndrome but the answer to that is simple: he wouldn't be the Erik I have come to love so very much!

I still worry about the future sometimes and what will happen to him when I can't be there for him anymore and I know there could be tough times and rough roads ahead of us but I have to deal with those the only way I know how: one day at a time.  

I have often  had regrets that it took me so long to see my son just for who he is. I know there are many parents, just like me, who understand this journey and the worries, fears and sad feelings that sometimes accompany raising a handicapped child and there are also parents who are  just starting out on this road. I hope my own personal story can inspire and encourage them to see their children first and foremost and not let the disability define who they are or have the potential to be. All of our children will present us with different challenges throughout their lives whether they have a disability or not. Our kids with disabilities are much more like us than they are different from us. We should love and enjoy them for who they are and not ever be afraid of their limitations.

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  • Hi, I like your story and understand you. I love all children and people with Down Syndrome. I have wonderful granddaughter 7 years old with DS, I love her very much. I am confident that people with Down Syndrome, they are just different, but still the same part of human society living on our planet. I have started to write a book “The rights for Life”- different stories about life of people with DS and these families and from different countries … I would like to ask your advice and tell me your story from America. I wrought a book with situation comedy and humour (about people with learning difficulties) subject “Adventures of Perfect Difference”. Another book “Life on Planet Parklands” – for kids was written by my 12-year-old granddaughter. We began to write books like that, in order to share my working experience regarding disabled people, to help the audience comprehend and accept that kind of people in our community. This books available at or I would like to ask your permission to use your blog in my book or advice. Are you from America? Thank you very much. Nina from England.

    Nina Edwqards on

  • Erik is a very special young man, I especially love his sense of humour and the way he likes to tease you. You are an amazing mom to all of your kids Ingrid, but you can see the special bond with your boy. Thank you for sharing so open and honestly.

    April tunke on

  • My son is 23 so like my story. I love your son

    Karen gregory on

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