Congratulations on the birth, or upcoming birth of your baby! Whether this is your first child, or you already have children, becoming a parent is one of life’s special moments – a fantastic opportunity and a unique challenge. A birth of a child prompts us to deeply consider the expectations we have for our new baby.
My wife Angela and I have two sons; Quinn who is 18 years old, and Daniel who is 13 and has Down syndrome (DS). As parents we have experienced challenges and joys. Having Daniel in our lives has added a new set of challenges and responsibilities for us as parents.
There was a time when we were in a dark space. We were ignorant and uninformed – we were in a state of shock when we got the “diagnosis” that our child has Down syndrome. As our journey unfolded, we learned a lot about DS. We not only met the challenges we faced, we feel we have learned to thrive as a family.
One important thing we have learned is that our son Daniel is 90% like every other kid. He has a fantastic, unique personality, a strong will, a sense of fun and adventure, and other traits that make him a real joy to be around. Yes, his speech is sometimes hard to understand, and he has some learning challenges, but he does learn, and has some real talents.
Daniel plays basketball, snorkels in the ocean, acts in school plays, does great artwork, plays drums, and enjoys just having fun like any other kid! We are confident that given attention, support and reasonable time, he will learn most anything he puts his mind to, and his iPad and other technology will facilitate his ability to apply himself to things no one thought possible a generation ago.
Often new parents wonder how their child with DS will affect siblings. Our experience has been a positive one. Quinn has learned to be more patient, more understanding, and has grown in his feelings of responsibility for his younger brother. He really enjoys having a brother who shares his interest in Legos, and they enjoy swimming together. Quinn has a quote that he wrote which we really like; “I have 46 chromosomes, my brother has 47. Some people call this Down syndrome. I just call him my brother. Just call him Daniel.” We can’t imagine what our lives would be like without Daniel.
For Angela and I, and we hope for you too, the birth of a child is a miracle – a new creation. Imagine, a new being never before present in the world, is given to you. When our son Daniel was born in the morning, on a cool crisp day in April 1999, I remember sitting in a chair in a large room next to the OB unit. There was a long window next to me, and sunlight was streaming in, and the whole room was glowing with a golden hue. I sat there with Daniel in my lap, holding him, and feeling like we were in heaven.
Later I found out he had Down syndrome, and that day decompressed into a bad dream as I accompanied Daniel through the corridors of the hospital as he went through test after test. Late in the afternoon, as I walked out of the hospital with my older son Quinn, who was 5 at the time, I had my head down and tears in my eyes. Quinn looked up and saw an amazing rainbow, and said “Hey Dad – look at that pretty rainbow!” At that moment, I had a surge in my heart and new right then that Daniel was still a miracle!
In closing let me share one more thing. Don’t feel bad about taking time for yourself and your spouse (or significant other, or friend). Take time to enjoy the things that you like. When you have a child with Down syndrome, you can feel a big commitment to learn all you can and try to “fix things.” This is all well and good, because these strong parental urges mean you care. But also take time to laugh and enjoy yourself, enjoy your children and your friends.