Today we are here to share with you about a sweet little boy named Sam and all the trials and tribulations of being a special needs Mother. Thank you Kari for sharing with our readers about your amazing family and for continuing to educate others. You have such a huge heart and we are blessed to have you as a guest on The Linda Project.
With October being Down Syndrome Awareness Month can you tell our readers a little bit about your family?
My husband and I have been married for 7 years. We have a busy household with two lovely and spirited children; our three year old son named Sam (who has Down Syndrome) and our 8 month old girl, Adelle. We also have a dog, Olive, basically the canine version of Garfield: lovable, slightly overweight, lazy, and food-obsessed.
How does Sam’s diagnosis impact his life?
For us, Down Syndrome was a surprise diagnosis after birth. Our son Sam had trouble with oxygen and was transferred by ambulance to Children’s, just a few hours after delivery. At Children’s he was diagnosed with both Down Syndrome and a heart defect (Atrioventricular Septal Defect (AVSD) – which means there were basically holes between the left and right atriums of the heart where there shouldn’t be holes.)
It was a scary time for us but the scariest parts were the unknowns. Flash forward to three years later and we have a son full of energy who loves life, his dog, being outside, books, and anything Curious George. He is becoming more and more verbal (and does signs) but still has a ways to go in terms of words (he sees a speech therapist once a week privately and does speech through our early childhood center preschool) so it takes more of an effort for others to truly get to know him and see his silly side and hear his heart bursting belly laugh but I can assure you it is absolutely worth your time.
Sam has shown incredible strength and determination. After successful open heart surgery at 5 months of age, he began physical therapy almost immediately. When he couldn’t crawl typically, he had a mean army crawl! When he couldn’t walk typically, he did a surprisingly quick bear walk.
There has been nothing that has stopped him from doing what he wants to do. He is a determined and tough little guy!
Despite our scary beginning and bumps along the way, Sam has opened our world to new possibilities, new friendships, and a deep appreciation for taking life slowly. Growing up, academics were considered extremely important in my family and currently I’m an educator in the public schools, so I still strongly value education and want Sam to do as well as he can but I have already, almost unconsciously, felt that pressure kind of let go- it’s okay if he is not amazing at math. He will do as well as he can and that’s okay. After being through things like heart surgery and other health scares, you realize you just want your kids to be healthy and HAPPY.
Being a mom of two, how do you cope on your tough days?
Both my husband and I really value our own “me” time. Don’t get me wrong, we love to get out and do date nights (and I think that’s so important.) But we also like to give each other breaks. He will go hunting one night and I will take a night and just hang out with my girlfriends. Life can get really busy, so sometimes I just need a hot bath or to light a candle and read a book by myself to cure a rough day when we don’t have time to give each other a night out. I am reading the book, Jesus Calling by Sarah Young and it’s a great little daily devotional that helps calm the soul! Our kids go to bed kind of freakishly early right now, so sometimes just sitting on the deck with drinks with my husband is a nice way to cap off a crazy day!
What fears do you have as special needs parents?
Sam’s (at the time, future) pediatrician came to visit after Sam was transferred to Children’s and I was still at the hospital waiting to be discharged. He gave the best and most simple advice…”Take it one day at a time.” This was my mantra for quite awhile in the beginning. I still need to remind myself when my thoughts race to the future. There is a certain extra vulnerability to special needs children, especially when they can’t communicate everything to you.
What resources have been helpful for you?
Above all, people! We have a fantastic family group in our area for people who have kids with Down Syndrome. I throw out e-mails to them all the time and we meet monthly. Sometimes we do play dates or mom’s happy hours. It’s so nice to have people to connect with who have been through similar situations.
There are a few books that I have found helpful. There is a great short story out there called “Welcome to Holland” (easily can be googled- the whole thing’s online) that we used as an analogy to share with people how we felt initially when Sam was born. I love, love, love Kelle Hampton’s blog, Enjoying the Small Things (http://kellehampton.com/blog). She has a daughter with Down Syndrome (and two other kids) but it doesn’t define her blog- she writes in general about life, being a mom, etc.
What would you like people to know about Sam or other children with a similar diagnosis?
My thoughts echo what many friends and acquaintances on similar paths would say: teach your children the greatness that comes from our differences and to not be afraid of it. Model and use people first language. And finally, enough with that r-word.