By Patty Niemaszyk
When we received news from our daughter and son-in-law that they would be expecting a baby in October we were excited beyond belief. This would be our first grandchild. My husband and I both spent our careers teaching special education. He had been retired for 5 years and I was to retire in June. What perfect timing! We would have so much to look forward to!
Our excitement began a little sooner than expected when I was returning home from caring for my mother, who was critically ill. When my flight landed for a layover, I received a text message from my daughter that she had gone into labor and was in the hospital. She had been blessed with a wonderful pregnancy, and labor and delivery went perfectly. After seeing our precious Owen Michael born and resting in the loving arms of his parents, Sara and Mike, we went home for some much needed rest.
While trying to calm down enough to sleep, I couldn’t stop thinking about the beautiful boy I had just left! I remember feeling that way when my own children were born, but there is something different when it is a grandchild. He is such a striking mix of his parents…he looks just like a miniature of Mike, but with Sara’s strawberry blonde hair. It feels like his bright blue eyes can see all the way into my soul. I knew from that first night he was born he would have so much to teach us.
We were very surprised by a call from Sara a few hours later telling us that Owen had experienced some breathing problems and was now in the NICU. It wasn’t until the next morning that we were told that Owen showed some “soft markers” for a possible chromosomal abnormality, but he did not have enough signs that would indicate a specific diagnosis. They would run a chromosome study but it could take up to two weeks for results.
In the meantime, we watched Sara and Mike sit by his side day and night. What should have been a time of joy and excitement became a time of fear and helplessness. It was clear they were in so much pain watching Owen struggle and not be able to make it better. Of course, we as parents were experiencing the same pain! No matter how old our children are, it is so difficult to watch them suffer in any way. What words could we say to comfort them? What could we do for them to make this time of waiting and watching more bearable?
After nine days of watching Owen make steady progress toward breathing on his own, gaining weight and resolving his heart issues, the neonatologist approached the cubicle. It was clear he was there to deliver some news. He entered the room and very curtly said, “It is confirmed. He has Down syndrome.”
I was shocked; not by a diagnosis of Trisomy 21, but by the insensitive and uninformed way the news was given. As I watched Sara and Mike fall apart before my eyes, I struggled to think of what to do or say to comfort them. All I knew was how much we had all loved Owen since the minute he was born. I turned to them and said, “I have watched you sit here for the last nine days loving this little boy with all your heart. Just because someone came in here and put a label on him does not change who he is! Do not let that label define him. His name is OWEN! It is not Down syndrome!”
I now watch with so much pride as this loving family grows together. Of course there are struggles! It is so hard not to worry. What will the future bring? What will the best education options be for him? Will he get a job? Will he live on his own? I try to encourage them to live in the moment. It seems cliché to say “take one day at a time,” but I know if we don’t we will miss out on so many wonderful experiences with him. When we allow ourselves to live in the moment and only think about what Owen needs right now, he guides and teaches us about what is important in life.
To me, Owen is just like most 5 month old babies! He breastfeeds like a champ, but also takes a bottle easily. He needs 2-3 naps per day or he gets fussy. He loves to have people play on the floor with him during tummy time. He smiles, babbles, and blows bubbles at us. He enjoys having books read to him and songs sung to him. He loves to put everything in his mouth. Owen has developed a personality all his own! If he is in a cranky mood and I sing “You Are My Sunshine” to him, he stops crying or fussing and smiles. Oh how this little man can melt my heart! Sure his muscle tone could be better and we have to work on not letting him arch his back. He needs encouragement to use both hands and is working on rolling from his back to his tummy. But, when we do these therapy exercises with him, Owen doesn’t know we are doing therapy. He thinks we are just playing and having fun!
Owen Michael has blessed our family and filled me with hope. I have seen so much change in awareness and acceptance in the past 40 years of working with individuals with disabilities. I look at Owen and know he can teach others what it means to have different abilities. He will show all of us that the sky is the limit!