One of the very first pieces of information on Down Syndrome sent by mail by a well known organization was my first side swipe of unsolicited information I received that caused me pain and was not helpful in the first months of processing.
With some distance I understand that it was meant with the best intentions. But let me warn you, there is a great deal of out dated information out there. People don't really know how to help you but they want to, so their first response is to give you all information that they know about Down Syndrome. I found it so overwhelming, I think I spent the first 6 months saying "no thank you, please don't give me any information about what to expect for the future". I felt terrible pushing people away, but I couldn't handle it. I just needed to focus on loving and bonding with my new, beautiful baby without being reminded of the dark cloud looming over his life. The best council I could offer a parent dealing with a new baby and/or a fresh diagnosis of Down Syndrome is: Just love your baby. Even if they are facing certain health challenges, this is what they need from you during the first year of their lives: loving arms and a supportive family. While there are some common characteristics shared by people with Down Syndrome, each person will have their individual journey. It is a challenge to let go of the worries. For a while it was a conscious, daily decision for me not to think about it and the thousands of anxious questions floating in and out of my head. But when I was ready, I began to collect the information I felt was most helpful and appropriate for the specifics of our family.
The morning I received this big envelop with no return address on it, my guard was down. As I opened it I recognized the organization and wondered why they were sending me this package and how they got my address. I still don't know. I scanned the heading and saw Down Syndrome in the title and with a quick scan of the first paragraph, I was informed that my child would be "mentally retarded". I remember standing there in the front hallway as this statement hit me like a blow to the stomach. I stood there clutching the handout sobbing. This was the first of many labels that we have been forced to grapple with that leave you feeling like your child will always be deficient. Like the flick of a switch, it busted me out of my resolve to focus on living each day and loving my lovely boy.
He really was a beautiful, cuddly and peaceful baby. I would often say to Rob "He doesn't even look like he has Down Syndrome. Do you think he looks like he has Down Syndrome?" After a while you only ever see perfection.
My fragile handle on peace was shattered. The questions began to churn with alarming speed. Will he be able to think for himself? Will I be able to talk and laugh with him as I do with my other children? Will we have a meaningful relationship? How will he do in school? This means that I must never say that Jack is smart, because he does not have the capability of being smart. I need to find other positives that I can praise him for but he will never be smart.
Well, let me tell you, at age 2 and a bit, Jack is showing me how incorrect I really was. My kid is smart. As I have already blogged, Jack has a fascination with cause and effect. He loves to see things hit the floor, he loves water. This past week he decided to test the law of gravity by dragging a full gallon of white paint down the hallway and pushing it down a flight of 14 stairs to the front hallway. He saw the paint can, he recognized what it was because this was a repeat experiment and I thought we were lucky last time when only a little paint was spilled. I didn't realize that a second can was tucked away behind the humidifier when I jumped in for a quick shower. The kids were peacefully looking at books in Jasmine's room. She would make sure he stayed out of trouble for the 5 minutes it took to wash my hair. When Jack spotted the can, he knew that it would give him the entertainment he wanted to send the paint can down the stairs. It was too heavy to carry, so he slid it carefully around the humidifier, down the hallway and to the edge of the stairs. The paint can opened on the first bounce and emptied its contents all the way down the stairs, narrowly missing the carpet at the bottom. An entire gallon of white paint. I was dripping wet gaping at the mess in shock. Jack was in his glory, grinning at me with pride, hands covered in paint.
Because of Jack, I now understand the emotion my parents had when they would tell me that if I had ever been the first child there may never have been any more children because I was equally mischievous. Our house is beyond childproofed, it is Jack-proofed. What an amazingly resourceful child!
I am not saying that you should reject all information that people will want to share with you about Down Syndrome or about people they know who have Down Syndrome. I am just saying that you are allowed to say "no thank you, not right now, I need more time to find my own bearings in this new world". And, not all information is helpful. You will need time to learn how to filter the right stuff. I spent a lot of time praying, seeking God's face. It seemed that nothing anyone could say to me could sooth the pain and grief I carried. I needed to hear the truth from God directly. I found great comfort in reading God's word, especially the Psalms. Then when I was stronger, a friend had the courage and sensitivity to sent me this book.
It contains some basic information about Down Syndrome and how it effects children's development. But more importantly, each chapter has anecdotes and reactions from parents of children with Down Syndrome that I could really begin to connect to. Maybe this is where you are at right now too.
The second book that impacted me for the positive was this one:
I identified with so many of the stories this author shared about her experiences and it was relevant to my own journey. I wanted to know more about what to expect from Infant Development Services as Jack got older and progressed in his development. Many of you will also identify with her hospital experiences as her son spent the first months of his life in Neonatal intensive care.
Finally, I found encouragement through reading blogs written by moms of children with Down Syndrome. Seeing their beautiful pictures, hearing about the joys they experience and how their children and families are thriving.
This is my motivation for beginning this blog. To allow you a window into our lives to see that there is hope for happiness. We have a big God who answers prayer and walks closely with us through each day. God is leading us daily away from comparing our own lives and the lives of our children to that of others. He is growing a sense of anticipation and excitement to see who Jack will become as he grows older and what amazing gifts he has already been given in just being Jack. And this is trickling into many other facets of my life as well where I do a lot of comparing and measuring of myself against others. I have discovered that the more I choose to ask God to help me look at the world the way that He looks at it, the more satisfaction and peace I am able to have no matter what the circumstances.
Unless the Lord had given me help, I would soon have dwelt in the silence of death. When I said, "My foot is slipping" your love, O Lord, supported me. When anxiety was great within me, your consolation brought joy to my soul (Psalm 94: 17-19).