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Your Child’s First Name
Your Child’s Age
Does Your Child Have Siblings?
Kasey (girl) age 7
Bayleigh age 5
Baby brother or sister coming in February!
Did You Have a Prenatal or Postnatal Down Syndrome Diagnosis?
How Was The Experience Surrounding Your Child’s Delivery?
Lainey arrived with some flair. I had the doctor check me earlier in the day and he said I wasn’t in labor and he would see me in a few days at my next appointment. He saw me about 10 hours later 20 minutes after I got to the hospital! Lainey was coming, ready or not.
When Lain was about 20 hours old, my husband announced to me that he thought she had Down syndrome. He saw it as soon as they put that stuff in the baby’s eyes, but went home to see the other girls for dinner, researched Down syndrome, and get his emotions under control before he told me. I didn’t believe him and went out and asked the nurses. They told me they didn’t know and couldn’t diagnose and we would have to ask the doc in the morning. After a few questions from the doc that seemed odd at the time, she finally did confirm that Lainey had some indicators of Ds.
I knew she was going to say this, but I started crying and begging “no” right away. It was a really emotional day. Everyone was very nice and supportive, but the next day the other pediatrician came in, hugged me, and told me everything Lainey WOULD do and the joy she WOULD bring. I am forever grateful to her and the hospital staff. I’m sure it was hard for them, too.
What Was It Like Bringing Home a Child with Down syndrome?
I was in a little bit (ok, a lot) of shock. I made my husband text our closest friends because I couldn’t tell them. I was ok to talk about once they knew. Everyone was great with their response. They were supportive, loving, and they didn’t say “I’m sorry”, which I now recognize and appreciate. I work at a college and my Vice President emailed me and lovingly told me to pull up my big girl pants because there is nobody better to be her mom than me. I appreciated that email. I so fiercely loved her and wanted to do everything.
When she was 2 weeks old, we made a Facebook announcement (we love Facebook for updates). That was hard because then it was so real, but it was such a relief. Support also showed up out of the woodwork. People were so caring and loving and now they love following her story!
What Has Development Been Like For Your Child?
We are so lucky that Lainey is very healthy. She didn’t have a heart or gut conduction, could breathe and swallow, and has only had tubes and eye muscle surgery. We got connected with early intervention at 8 weeks old and PT, OT, and ST followed. She walks, climbs stairs, babbles all the time, eats and eats, and makes friends wherever she goes. She isn’t afraid of anything or anybody. She only has a few clear words, but she can impersonate Chewbacca, so I guess that’s winning!
What Are Some Good Surprises You Were Not Expecting About Raising a Child with Down Syndrome?
Lainey (and her sisters) is our world. She brings so much joy and makes us better people and parents. If only I knew then what I know now, I wouldn’t have cried nearly as much! I’m trying to talk my husband into adopting a kiddo with Down syndrome!!
What Are Some of Your Favorite Family Activities?
We love to travel and we LOVE Disney World. Lainey turned 2 in August and has been to Disney at least 5 times, Michigan, the beach, and Gatlinburg. We like fairs, festivals, and doing things at the college I work at. She is the easiest of our 3 kids so it’s fun to drag her around everywhere!
What Challenges Have You Faced?
Lainey is healthy overall, so we are lucky there, but she does have a bit more than some kids – extra ENT appointments, eye appointments, and gets cough/cold/kinky head stuff more often. “Case managing” is time consuming!
Of course we think about Lainey’s future. Will she like school? Will kids be nice? What kind of classroom will she be in? Will she be part of the 75% of developmentally delayed adults that are underemployed? How self-sufficient will she be? Who will help take care of her later?
What Would You Tell Yourself When You First Received Your Child’s Diagnosis Now That You Know What This Journey Is Like?
There is a poem called “Holland” that someone sent me. It’s perfect. It may seem cliche (especially when you are first raw and emotional), but it really is spot on. This is just a different journey. This kid will move mountains and will teach me to do the same. Soon it will not be “my kids with Ds”….it will just be Lainey. She’s going to be a blast and teach a love that you never could have imagined!
What Would You Tell a Family Whose Child Just Received a Down Syndrome Diagnosis?
A lot of what I said above about telling what I would tell myself. I would congratulate them, tell them it’s going to be better than they could ever imagine, and this baby is going to be their life guide, their North Star. I would also ask if maybe I could hold their baby, Haha!