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How Our Daughter with Down Syndrome Exceeds Our Expectations
I'll always remember that morning in the kitchen when my daughter, Johanna, was 20 months old. We had been trying to get her to walk for weeks and weeks, but she would only take one or two tentative steps before crumpling like a rag doll to the ground. Her physical therapist, Isabel, was across the room, encouraging her by shaking a box of graham crackers. Johanna stood with her back against the cabinets and glanced over at me nervously, her big hazel eyes owl-like behind her red glasses.
"Go for it, Jo Jo," I said wearily. I'd been up most of the night nursing her 3-month-old brother, Teddy. It was only eight o'clock, and I was already counting the hours until naptime.
Johanna hesitated for a moment, and then, with her arms thrust forward, she took six Frankenstein-like steps. I stood stunned, staring at the back of my daughter's blond ponytail. Then I knelt down to hug her.
"Yay!" she said, clapping her hands. I pulled away and looked at her -- her wide, upward-slanting, almond-shaped eyes, her button nose, her small rosebud mouth that hung slightly open. Her cheeks were wet, which I realized after a moment was from my crying. "I love you, Princess Johanna," I said.
"You know she'll do everything typical kids do," Isabel said softly. "Kids with Down syndrome -- they hit all the same milestones as everyone else. It may take time, but she'll get there."
I had learned over the previous 20 months never to underestimate my daughter. But it had taken me a while to get to this place. Johanna's diagnosis, delivered an hour after her birth, had seemed overwhelming. Infants with Down syndrome are more likely to have health complications, and Johanna had been born with an intestinal blockage that required immediate surgery. Once she was home two weeks later, our days were filled with doctor's appointments and therapy sessions (she was automatically eligible for the state-run Early Intervention program). My husband, Jamie, and I had just moved from New York City to a Connecticut suburb where we didn't know anyone, which added to my sense of isolation. I liked the mothers I met whose children had Down syndrome, but it was hard to relate to them. Most had refused prenatal testing or had learned early on in pregnancy that they were carrying a baby with Down syndrome and were at peace with the diagnosis. But if we had known, we most likely would have terminated -- a fact that haunted me every time I looked at Johanna.
I loved my daughter, the way she cooed contentedly in my arms, and the reddish-blond fuzz on the top of her head. But what really scared me was the unknown. Every book I read or website I visited seemed filled with terrifying information about raising a child with Down syndrome. I lay awake at night imagining Johanna suffering infantile seizures, or going into respiratory distress, or developing leukemia.
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I think it's important to let people know what it's like to be a parent of a special needs child. I have 5 children, the last 2 are disabled. The greatest thing we can do is TEACH. So many people are ignorant so the more articles about the TRUTH as to what it's really like raising kids with disabilities will help our children become more accepted and included in the future.
9/23/2011 11:18:16 PM Report AbuseI went through genetic counseling and the issues added up to my having a one in four or five chances of having a child with DS. It was a long pregnancy and difficult delivery. I tried to work through all the issues in my head trying to figure out what I would do..not possible. Regardless I was determined to finish my pregnancy which was about my feeling fit physically. I can only offer my good wishes and support and empathy to someone dealing with ..all the complexities..!
9/23/2011 04:07:33 PM Report AbuseAs someone who had a brother a year old with a birthday 2 weeks before hers, guess what..everybody assumed I had the same problems. He was a handsome guy with serious vision/eye issues, balance problems, learning issues as a result and eventually more serious problems. It was just easier for my mother with so many children..he rec'd all their attention..usually the wrong kind, and the financial support. DS can be visually recognizable, many disorders are not.
9/23/2011 03:19:24 PM Report AbuseIm moved to tears by this mothers story. As a nurse and a mother of four, I commend her honesty. My fourth child was born with Holoprosencephaly due to Trisomy 18. I didn't find out until after my 2nd U/S at 24 weeks. I carried her to full-term and she lived for 45 minutes, dying in her daddy's arms. I don't regret one minute of her little life.Id like to see more articles like this in Parents magazine.
9/23/2011 01:07:35 PM Report AbuseI thought it was a good article and good for Parents magazine for writing about it. I think the mother in the story is just concerned if her son will change his thought process about his sister with Ds when he gets older. Heck, I have thought that. My daughter 5 and son with DS 17m And she sees no difference in her brother but as a mother it makes you think will that change someday where difference plays a factor. I can relate to what she was meaning.
9/23/2011 11:44:11 AM Report AbuseThank you for finally posting stories and information about children with special needs and down syndrome. Parents you don't address these very real issues enough. So Thank you for sharing one Mom's journey
9/23/2011 10:01:11 AM Report AbuseWhat a sweet story.
9/23/2011 09:44:11 AM Report AbuseIt amazes me that the first two comments about this wonderfully written story could be so cruel to the author. She is a mother brave enough to share her story about her child with down syndrome. Everyone's experience and feelings are different and there is no need to judge someone based on their own opinion with their children. It must be nice to know exactly how your children will feel in the future about their siblings whether there is a disability involved or not.
10/25/2010 08:54:15 PM Report AbuseAs far as her being overly concerned with milestones, I believe the first part was titled "It make take time but SHE WILL GET THERE". Does that not show a level of acceptance? And I think it is also normal to just see how your child sizes up. If it weren't we wouldn't have GPAs, growth charts, class ranks, standardized testing. It's part of our culture to compare. I for one am glad she felt brave enough to open herself up to such a public forum as this.
10/20/2010 09:55:41 PM Report AbuseI have a daughter who very much loves her Ds brother, but at times thinks I love him more (BTW she thinks that about her older sister sometimes too). She sees how much of my time is taken up with therapy or support group meetings and would rather herself be the center of my attention (that is a whole other parents article). I believe the point the writer was making was that she enjoys their current state of innocence. A wonderful thought.
10/20/2010 09:55:03 PM Report AbuseWe would all like the world to be roses and sunshine, but the fact is that even "normal" siblings can resent the other for getting more attention, or feel shame when they are confronted with being related to the one everyone picks on. Not to say any of these things WILL happen, but to deny that it could happen is unrealistic.
10/20/2010 09:54:17 PM Report AbuseI want to thank Parents magazine for publishing a true example of life with Ds. Although some have complained about the writer's feelings that her son may feel "twinges" about his sister, I feel that is a very real emotion. Both on her part and for her son.
10/20/2010 09:53:32 PM Report AbuseWhat a beautiful story. I commend the author for sharing her joys and fears with other parents. We ALL have joys and fears when it comes to parenting. Shame on those who would judge her.
10/20/2010 08:22:59 PM Report AbuseIt really upset me that this mother thinks that Teddy will be ashamed of his sister. She really should give her son more credit than that. My children are so proud of their brother, they are his biggest fans and they would never once consider being ashamed of him and never resent him. Our son has had many health concerns that has required extra attention and even our time away from the other kids due to hospital stays- and still only love from them!
10/20/2010 01:46:41 PM Report AbuseI wasn't saying that having a child with DS isn't difficult, I worry everyday for my son's future, I was saying that this mother seemed resentful. She is almost certain that her son will have "twinges of resentment or shame" towards Johanna. Why can't she picture a future of nothing but love for Johanna. There is enough negativity about DS and I don't think that parents of children with DS should add to that. Maybe I will write an article about what a blessing it is to have a child with DS!
10/20/2010 01:10:08 PM Report AbuseI feel it is sad, as a mother of a child with DS, that other parents can belittle another mom and how she has dealt with the situation. This mom put herself out there and was honest. I am glad that she went out there and let parents and people know that her children are her world, even after she stated that if she had known she would have terminated the pregnancy!Through these type of articles mabye we can reduce the number of terminated pregancies from 90%!
10/19/2010 10:40:46 AM Report AbuseWhy don't you two ladies write an article about how having a child with DS is no different that any other child or how it doesn't create any extra worries for parents or extra challenges if it's been that easy for you - I'd love to read it. Apparently we need to learn some tips from you...
10/19/2010 10:15:57 AM Report AbuseThe first 2 comments enraged me. "Do your best job every day". Why can't you just leave it at that? Why feel compelled to tell this mother how to feel about her children. I think we all know how deeply we feel about our kids - that is the same for all mothers. If that is how having a child with DS affected her, so be it. My 2 year old has DS also and I related to every single thing she said in the article. Families don't need others, who should be able to be supportive, tearing them down.
10/19/2010 10:15:52 AM Report AbuseI'm sorry you both feel this way, but I saw absolutely no negativity here, just a dose of reality that all parents could use, regardless of whether their child has DS or not. Kudos to Parents for running this piece.
10/19/2010 08:51:46 AM Report AbuseBTW Jaimee I agree with you totally.
10/18/2010 11:50:57 PM Report AbuseI have a child with DS, too. The writer of this article seems very concerned with milestones and comparing her daughter to others. If you see yourself in this parent: let go! DS is not a nightmare. Being a parent is scary period. Regardless of how many chromosomes your kid has, you have no idea what the future holds, so stop worrying about it and do your best job each day.
10/18/2010 11:50:18 PM Report AbuseI was very upset by the overall message of this article. I have a son with Down syndrome who has four siblings, that would never view him as 'different' or stuggle with 'twinges of resentment or shame'. The writers' opinion of what her child will eventually feel is based on her own personal struggles, and imposes a negativity to Down syndrome that is unwarranted and misonconceived. Parents magazine is usually a reliable source for information, but I feel the ball was dropped on this one.
10/18/2010 05:00:36 PM Report Abuse