What March 21st Means to Me (2018)

28945247_520592162830_405684227_oThis World Down Syndrome Day, our Luke is 5 years old! The past couple of years have been both challenging and rewarding. In my experience, ages 4-5 are the “terrible twos of Down syndrome.” This child is into everything! Teaching boundaries has been tough, and to make the job tougher, Luke is bigger, stronger, and more experienced than any typical 2-year-old, which means he can get into that much more trouble. We’ve had to take “baby-proofing” to an advanced level with this one.

But there is always progress! It’s slow progress, but he is surely maturing and learning and growing. Most helpful is his newfound use of consistent language. It has improved by leaps and bounds this past year! We can now ask him questions. He verbalizes many of his needs. He uses our names. He tells us he loves us. We still have a long way to go to be fully able to communicate verbally, but what a blessing this growth has been! To be able to hear some of what is on his little mind has been an answer to prayer and a wish come true. I can’t wait for him to learn more so we, in turn, can learn more too.

When you learn that your child has a disability, I think most parents anticipate the challenges. I know I did. I worried and wondered (and still do sometimes). I expected that some things would be harder because of it. But what I didn’t expect were the blessings. Of course I knew that Luke himself was a blessing, but I had no idea that his diagnosis of Trisomy 21-Down syndrome would open so many opportunities and connect us with so many people. These are people I would not have met and groups I would not be a part of otherwise!

Take, for example, our homeschool co-op. I chose it specifically because it is special-needs inclusive. Knowing that all of my kids could attend and learn and make friends is what drew me to it. And what a blessing it has been for us! We’ve all formed wonderful friendships and received love and support that we likely would have missed out on had it not been for Luke and his needs. It’s amazing how God plans and lays out our path for us.

Equally amazing to me is how positively having Luke’s needs have affected our other kids. Don’t get me wrong, there are plenty of challenges there too, but not in the ways I initially worried. I worried about jealousy or others feeling left out or not understanding why he is sometimes treated differently or given extra attention. But having a sibling with special needs has only increased their awareness and acceptance of others with differences. It’s given them a comfort level well beyond any I ever had as a kid. As our circle of friends has grown to include more and more families with kids who have varying needs, I witness time and time again how loving, compassionate, and understanding my own kids are. And I feel like I can’t take credit for that. They’ve learned something well beyond what I could teach them. God is teaching them bigger things through their brother with Down syndrome.

Lately I’ve been hearing other parents of kids with Down syndrome refer to us as “The Lucky Few.” They’re using a symbol of three small aligned arrows to represent the third copy of the chromosome and to also represent the strength that we find when we are pulled back even farther than we think we can handle. 1 in 700. Approximately 1 in 700 babies in the US is born with Down syndrome. Hitting that jackpot was not something I ever anticipated, and I can most certainly feel myself being stretched and challenged on a daily basis by this 5-year-old in his “terrible twos,” but they’re absolutely right in comparing it to an arrow on a bow string. The further you allow yourself to get stretched and pulled back, the stronger you become and the farther you can fly. With each obstacle that we overcome together with Luke as a parent, a sibling, a family, we grow that much stronger. We need him more than he needs us-in so many ways this is true. Not just for our family, but for the world. The world needs people with Down syndrome and all other varying abilities so God can teach us the bigger lessons. So in celebration of World Down Syndrome Day this year, I will continue my attempts to “advance baby proof” to teach Luke his boundaries. I will continue to try to allow myself to be stretched beyond what I think I can do in order to meet his needs. And I will leave the rest to Luke and let him continue to teach us the bigger, more important lessons-the ones God knows our world needs. That’s what this March 21st means to me.

– Sarah

(Click here for the posts from 2014 and 2016.)

 

World Down Syndrome Day (2016)

28945422_520541234890_994591471_oThis year, March 21st finds our little guy at three years old. And it finds our family with a little more knowledge, a little more experience, and always so much to learn.

What has it meant to live with someone with Down syndrome this past year?

It has meant appreciating the village. The village of support we have is beyond what I ever could have dreamed. From his teachers and therapists to our family and friends, and even beyond to acquaintances and strangers, our interactions regarding having a child with Down syndrome are overwhelmingly positive. My favorite part of the village however, has to be Luke’s siblings. I’ve seen variations of this quote: “If you want to know how to treat someone with special needs, watch their siblings.” It is so true! Few things make my heart happier than to witness this. They meet him right where he is and then treat him with the same love, compassion, playfulness, and annoyance as their other siblings. With them, there’s no underlying therapeutic motive, and there’s no extra attention because he has a disability. With his siblings, he can most perfectly experience what life is like as a typical kid. More than anything, this is what I want for him! And this circle of siblings is the most blessed foundation for that.

It has also meant slowing down. Life is busy and life is fast. I often find myself too preoccupied with my daily tasks to stop and notice the little things. I have a hard time slowing myself down. Luke naturally takes things a little slower, and when I let him, Luke slows me down too.

Recently we took the kids on a little road trip. We stopped at a rest area to stretch our legs and it happened to sit along a portion of one of Tennessee’s scenic rivers. We all hiked down a small hill to adventure for a bit. On the way back up, the other kids took off running. Luke stuck close to me and Steven as he maneuvered the uneven terrain. I was tempted to pick him up and carry him so we could catch up to the others, but we really wanted him to stretch his legs before getting back in the car. So we let him walk. We let him be a little slower and we slowed down with him. And slowing down allowed me to see. It allowed me to see the way Jacob exactly followed the path his big brother and sister took. It allowed me to see how the rays of the setting sun streamed over them as they crested the top of the hill. It allowed me to breath in deeply the smells of early spring flowing from the river and its surrounding foliage. And it allowed me a chance to grasp my husband’s hand and just simply be in that moment with my family.

This past year I’ve discovered that Down syndrome means slowing down life just a little so we can walk it next to Luke, and what a beautiful blessing that is!

I’m sure I could write more, as we are constantly learning, but these are the highlights! This journey is not without its moments of frustration, but it is truly one of love, blessings, and celebration. And we got to celebrate a few big milestones this year! Sleeping in a big boy bed, participating in his first Buddy Walk, finally getting all of his teeth, saying “mama”…

It has been a blessed year with our Luke and we are so grateful that we get to share our lives with this person, who just happens to also have Down syndrome.

– Sarah

 

What March 21st Means to Me (2014)

19885592_520541229900_1095371686_oMarch 21st is World Down Syndrome Day. A year ago I had no idea such a day existed, let alone that I had a sweet, little two-month-old reason to be recognizing it, celebrating it. Last March 21st, we were in the beginning stages of noticing that our baby seemed to have a few little “challenges” that we would eventually learn were related to low muscle tone. Last March 21st, he was just barely starting to regress on the growth charts. Last March 21st, I had no earthly clue that our perfectly behaved baby was 4 months away from being diagnosed with the very thing I wasn’t aware was being celebrated that day. Last March 21st I had no idea I was living with, caring for, and absolutely in love with someone with Down syndrome.

Reflecting on this past year brings to mind so much. It reminds me of the uncertainty-the unanswered questions before the diagnosis. Why is he so small? Why can’t he sit up or even hold his head up well? Why does he have this funny breathing problem? Then came the discussions with the pediatrician when he was 4 months old, then 5 months, then the decision to draw blood for tests. The uncertainty continued as all she would say was “we’re doing a chromosome analysis.” Then the test results were delayed. We had to wait for weeks-trying not to worry…

Perhaps I was naive. Maybe I should have been expecting it, but hearing the doctor say: “We got the test results back and they did show something; Luke has Down syndrome” hit me like a ton of bricks. I literally felt my stomach drop and my head spin. My eyes immediately started to sting and it took every bit of strength in me to hold it together in that exam room. Steven simply said, “Okay, what do we need to do?” He’s amazing. I remember the doctor discussing some of the possible health issues we needed to be aware of; she had already scheduled appointments at Vanderbilt Children’s Hospital to have his eyes and heart checked. Suddenly my baby could have heart defects, thyroid issues, hearing or vision loss. “I know it’s a lot to take in, but do you have any questions?” All I could do was shake my head “no,” still barely holding it together. Steven spoke when I couldn’t. Then the nurses came in to draw blood to check his thyroid levels (another common health concern for people with DS). Steven held him as they poked his tiny arms trying to find a vein. I watched from the corner of the room through burning and blurry eyes. “Downs babies tend to be a hard stick” I heard one nurse tell the other. I know she didn’t mean anything by it, but my emotions were raw and hearing that comment was one if the toughest moments I’ve experienced since receiving his diagnosis. That was the first moment he was actually labeled as special needs. That was the moment it started to become real.

During my special ed classes in college, I remember my teacher stressing the importance of person-first language. She taught us not to speak of a “downs baby” or an “autistic child.” We were to speak of babies with Down syndrome, and children with Autism. And I learned it, but it wasn’t until that moment in the doctor’s office that I understood it. Luke wasn’t a “Downs baby,” he was MY baby. He was the same happy, sweet, 6-month-old who we had brought into the doctor’s office a couple hours prior. He was still Luke.

The next couple of days were really hard on me. Once we were alone in the car, I let the tears flow. I let the grieving process begin. Steven made the phone calls to our families-never a crack in his voice, always positive, so incredibly strong. He was absolutely my rock while I grieved. And it took a while. It took a couple days of putting up a stronger front for others and then letting my emotions flow when my family and I were alone. I remember rocking Luke and holding him so tight while I cried and cried and thought: “How could I not have known this about you? How could I not have been giving you what you need all this time?” But as I started to get used to the idea, as Steven assured me over and over that this really changed nothing, my grieving lessened. It lessened more and more with each appointment that showed healthy eyes, healthy ears, a healthy heart. It began to dissipate completely with each day that passed with Luke happy, healthy, thriving. And that brings me back to March 21st.

This March 21st is different. This year World Down Syndrome Day finds us with 8 months of Down syndrome “experience” under our belts. It finds us with 8 months’ worth of appointments, meetings, and therapies. It’s amazing what we’ve learned in that time about Down syndrome and about Luke. To me, this day means acknowledging what we’ve learned: the genetics of it, the particular ways that extra chromosome manifests itself, how much these ways vary from person to person. Most importantly, we’ve learned the particulars of how this extra chromosome affects our Luke and what we need to do to help him overcome his extra challenges. To me, this day means celebrating Luke’s accomplishments and how he met all of the goals we set for his first six months of therapy. It’s about celebrating what a hard little worker he is. It’s about appreciating all the help we’ve been given and the love we’ve been shown. It’s about the friends we’ve made, the community we’ve discovered, and the support system we’ve found. It’s about how wonderfully his brothers and sister treat him and take care of him.

Most important to me, though, is that I’ve learned and am recognizing more and more each day that Down syndrome is just a part of who Luke is. It is a diagnosis, not a definition. I was trying to explain this to someone the other day but was having trouble putting it into words. I was trying to explain how I don’t look at Luke and see Down syndrome first. I do see that he’s developmentally a little behind most other kids his age, I do see the therapy sessions he has each week, I do see that he’s still small, is barely starting to cut teeth, doesn’t yet say “mama.” But these are just all part of Luke and who he is. When I look at Luke I see a super sweet, 14 month old boy who loves to eat, take baths, play patty cake, and bear-crawl on his hands and feet. I see a kid who absolutely adores his siblings. Down syndrome has become an afterthought. It is no longer in the front of my mind when I look at him. It is no longer on the top of my list of worries. This past year has taught me so much and enlightened me in so many ways. I still have a long way to go and I know that Luke will never stop teaching us. I pray that I will always be open to learning these lessons.

First, Luke is a child of God, our number three baby, a little brother, big brother, grandson, nephew, cousin, friend. Second, Luke is someone with Down sydrome. That’s what I’ve learned this past year. That’s what March 21st means to me.

 

– Sarah