Not every woman makes the decision to have prenatal testing done in order to find out any genetic abnormalities their baby may be faced with, but many do. Michele Gallerizzo was in the latter camp. At the "advanced maternal age" of 35, Michele's doctor suggested she undergo a nuchal translucency, a special ultrasound, which lets moms know if they're at risk for having a child with a chromosomal problems, such as Down syndrome, and she happily obliged. She was relieved when she learned that everything checked out okay and that her predicted odds of giving birth to a child with Down syndrome were 1:3,800.
So you can imagine her surprise when she learned that she did, in fact, give birth to a child with Down syndrome.
Michele recently talked to The Stir about how she felt, finding out her son Alex's diagnosis; what it's like raising a child with Down syndrome; and how her child's diagnosis has changed her.
When did you find out your son had Down syndrome?
The night my son Alex was born. The NICU team was in the room because he was five weeks early. After the birth, they started cleaning him up, and then the neonatologist delivered the news that she suspected he had DS and explained a few features that led her to that conclusion. They did blood work and sent it out to be tested. We decided a few days later, when our pediatrician agreed that he also thought he had DS, that we would go on the assumption that he did, unless the tests came back negative. One week later, our pediatrician called to tell us he did have DS.
How did you feel when you first learned Alex had Down syndrome?
We were a little shocked, mostly I think because of the outcome of the other testing showing no indicators. But truthfully, my feelings at that moment as I held my brand new, beautiful baby boy was that it didn't matter. I thought he was absolutely perfect and I was already head over heels in love!
What kinds of conversations did you and your husband have after you found out?
Truthfully, my husband struggled with the possibility (and later confirmation) that our son had DS, and I was really mad at him for it. I couldn't understand how he could see anything that wasn't beautiful and wonderful in our brand new baby. From talking to a lot of other parents over the years, I have come to realize that his reaction was rather typical, for many parents (both Moms and Dads). They often "grieve" the baby they imagined they would have before they come to love the one they have. My husband worried a lot about what life would be like for him, for all of us, where I just had steadfast faith that everything would be ok. Different people handle things differently.
You have two other children, as well. How did they react to their baby brother being "different"?
My daughter was 7 1/2 and my other son was 4 when Alex was born. Our daughter was very inquisitive and wanted to know everything. Our son didn't really realize that anything was any different, other than understanding when his baby brother was sick. As he got older, he started to ask questions like why we had therapists who came "to play" with Alex. One day, he asked if he had DS, too. He also said he wanted to be a therapist when he grew up, so he could "play with babies for his job"! He has always been extremely close to his brother and his brother idolizes him. He is very nurturing, gentle, and loving. Our daughter went through periods of being resentful of the extra time and attention Alex required. But she loves him very much and Alex adores her!
What kinds of things were you worried about for Alex?
Immediately, I was worried about the health issues that can come with DS. I also worried about how he would grow and develop and how difficult things might be for him. But we dealt with the health issues (he had a heart defect that caused a lot of respiratory issues and multiple hospitalizations until his heart was repaired) and he has proven to me that he is capable of so many things. He has some challenges and some things take longer for him to learn or achieve, but he is making great strides and achieving many things on his own timetable.
What kinds of things were you worried about for yourself?
Truthfully, the thing I worry about most is dying and not being here for him. I worried about being strong enough to handle everything early on, but somehow when it comes to taking care of your child, you find strength you never knew you had.
How did friends & family react when you told them the news?
Our friends and family were great. They were very positive, accepting, and loving. They were also very supportive and helpful through Alex's hospitalizations and surgeries, and helping us care for our other kids during those times. We are truly blessed with great family and friends.
Alex is 9 now. What is his prognosis?
DS will always be a part of Alex's life. It is not something you ever grow out of. But Alex is much healthier now and is making great strides in learning and growing. We think the future is very bright for him. We have high hopes that he will find his niche in the world and that he will be a happy and productive adult. He will no doubt still need support, but we will do whatever we can and whatever he needs to help him achieve whatever it is he sets out to do.
How has your child’s diagnosis changed you?
Alex's diagnosis has changed me in many ways, mostly positive. It has made me realize that people with disabilities are just like anyone else, they just happen to have extra needs or challenges, but still have the same feelings, desires, and emotions. They still want to be loved, included, and respected. It has made me a much more compassionate person and a more spiritual person. It has made me much more patient and understanding. It has also taught me to appreciate the simple things in life and to appreciate how lucky so many of us are. It has taught me that God has a special purpose for all of us and that every life has value.
What would you say to moms who find themselves in your shoes?
I would first tell them not to panic. I know it can be scary not knowing exactly what lies ahead, but everything will be all right. You will learn exactly all you need to know as you go, one day at a time. If your experience is anything like mine, you will fall head over heels in love with your baby and they will bring you joy that you never even knew existed. Kids with DS have a range of emotions, just like everyone else, but the vast majority of parents of kids with DS talk about what happy, loving, caring, helpful, and sweet kids they are. This is certainly true of my son.
Where have you found support?
When my son was first born, I knew no one with a child with DS. I often asked his early intervention therapists if they knew other kids in our area with DS. I desperately wanted to connect with other parents. When my son was about a year old, a parent support group was formed in our area and we joined. We have a listserv that we subscribe to where we can ask questions, share accomplishments, ask and give advice, etc. The group has really grown and become a great resource to families in our area.
I also found CafeMom and joined the Down syndrome groups there. It was wonderful to connect with other moms from all over the country, even some from other countries. Many of us are still friends today (about seven years later)!
Have you ever been in a situation where someone has been unkind to Alex?
Fortunately, I really haven't. I have heard many stories and am glad I have never experienced it. I have had curious kids ask me things and I just try to answer them honestly. I know they are just kids and just curious. One of our neighborhood kids told me, "I'm sorry" when Alex was a baby. I told her not to be sorry, that I wasn't sorry and that he was a wonderful baby, which he was. But again, she was just a kid. I am sure her apologies echoed what she had heard at home, and I have always hoped she went home and told her parents what I said in reply.
What are the biggest challenges you’ve faced, raising a child with Down syndrome?
The biggest challenges we faced were with Alex's health up until age 28 months when he finally had his heart repair. He was sick a lot up until that point. It was hard on our entire family. I remember thinking it would be like that forever and parents of older kids telling me it would get better. Thankfully, it has gotten much better and he is overall a much healthier child.
What are your biggest concerns for raising a child with Down syndrome?
I sometimes question whether I am doing everything I possibly can to help him learn and grow. I am always learning, researching, working with his IEP team at school and with his therapists to make sure he has everything he needs and every opportunity to learn, grow, and be successful.
What are your hopes for your child?
My biggest hope for my son is that he will be happy with his life and as independent as he can, and desires, to be. I want him to find someone special to love and share his life with. I want him to find a niche where he can be productive and feel satisfied and happy in his work. I want for him the same things I want for my other children: Happiness, fulfillment, security, friendship, and love.
Images via Michele Gallerizzo