May 16, 2012 was one of those days. I remember sitting in the hospital room waiting for Bobby to get back from taking our "little guys" to school. It was just me and Will - one of those rare moments I knew I would not get many of. It was hard to believe that less than 24 hours ago, he had been turning and kicking inside my tummy. I was already missing that part, but I was also excited to see what God had in-store for this little guy.
As I sat there, I remember looking down at him as he was lying next to me on the hospital bed and for a split second I thought, "He looks like he has Downs". It was his neck.. . it looked so "thick" and then something with his eyes. A moment of fear gripped my heart, but then I realized how foolish it was - he looked just like Avery did . . . narrow face, almost bald, and skinny long arms. When Bobby came in a few hours later, he was holding Will and I noticed it again. I said, "Don't take this wrong, but I think he looks like a Downs baby." "No, he looks just like Avery" he said. Nothing more was said . . . not another thought was given.
A few hours later Will was taken off to do his "procedure". A luxury little girls do not have to endure :-) Bobby's mom and dad had gotten to the hospital with Noah and were waiting for him to be brought back to the room. The doctor came wheeling him in and he was sound asleep . . . our amazing miracle . . . our answer to a 9 year prayer. Then the doctor said that she would like to discuss some things with us and asked if we wanted Bob's parents in the room. Not giving it much thought, we nodded, after all we have had a little boy before and knew what to expect. She first began telling us that everything went well with the "procedure" and that they had given him some Tylenol so he would be pretty sleeping. Then she did something unexpected. She reached over and laid her hand on top of mine which was resting on Will's bassinet. My heart sank. There was something wrong.
"I want to talk to you about some things that I noticed during his examination" she began. She proceeded to tell us of all these signs . . . a straight crease across one of his hands, the slight almond shape of his eyes, the top of one of his ears that was bent over, the pinky that curved in, the low muscle tone. "These are all indications of Down Syndrome. Did you suspect anything during your pregnancy?" I shook my head.
I don't know if you have ever been at a place in your life when it seems time truly stands still and you are faced with a horrible unknown darkness. This moment was one of those moments. I looked up at Bobby whose face was stoic and unchanging. I knew he was trying to take it all in just as I was. I told her about what I had mentioned to Bobby earlier that morning and I began to feel the tears coming. I didn't want to cry. I wouldn't cry. I remember seeing my mother-in-law out of the corner of my eye and was wondering what they were thinking. Down Syndrome. . . how could God give us a child with Down Syndrome?
The doctor finished by letting us know that they could not be sure unless they did a chromosome analysis - so blood work was done and sent off and the waiting began.
Test after test . .. hearing test, EKG, echo cardiogram, another hearing test, oxygen level test, temperature after temperature, another hearing test. Through it all he was such a content little guy who hardly made a noise.
I remember sitting in the hospital room crying every time I would look at him. Maybe they were wrong . . . he did look like Avery and she doesn't have Down Syndrome. My hopes would rise because I didn't always see it. Maybe they were mistake. Nurses came in and talked to us, sharing information about Down Syndrome . . . about organizations that we could talk to . . . about First Steps and early intervention . . . and I felt myself getting angry. Why is everyone treating him like he has Downs. We haven't even gotten the test results back. I remember wanting to scream "There is still a possibility that they are wrong and he doesn't have it and I'm not giving up that hope."
Bobby wrote Romans 12:2 on the white board in my room. . .
And
be not conformed to this world: but be ye transformed by the renewing
of your mind, that ye may prove what is that good, and acceptable, and
perfect, will of God.
I was and am so thankful for God's word because when you are in the midst of a trial it is sometimes, often times, the only truth that you can cling to. Will was not ours, but God's and God's will for our life is perfect . . . just as Will is perfect. Yet, it was still difficult to remember that at times.
We went home with lots of information, appointments, and contacts.
Those first few days were so difficult. I wanted to find out everything I could about Down Syndrome, what was his life going to be like "if he had it"? What were we suppose to do next? There were just too many unanswered questions. Yet here is were information can be costly. Sometimes we look for answers in the pages of the internet instead of the pages of God's word. Down Syndrome, like so many other things, has such a wide scope. No two cases are exactly the same. Yet, we begin to obsess over information until we find the answers and sometimes those answers are not what we want to hear. I began to grieve for Will and the life he wouldn't have as I read all the "statistics". He would never father children, he will have a shorter life expectancy, he may become deaf . . . on and on I searched. Until I realized that by grieving for what Will wouldn't have I never could rejoice for what he does and will have. God created him perfectly and in His image to say that Will was less than that was to say that God was mistaken in His plan for Will.
I will praise thee; for I am fearfully and wonderfully made: marvellous are thy works; and that my soul knoweth right.
Psalm 139:14
A few days later our pediatrician called to let us know about some other lab work that had been drawn and was hopeful that we should receive the results from the chromosome analysis in a week or so. However, once again God had another plan. Bob walked into our bedroom where I was sitting feeding Will and I knew there was something, another one of those moments. I sat there saying a praying, "Dear God, let me accept whatever he is going to tell me. I know that you are in charge of our lives. God give me the strength that I need to hear these words."
"The doctor called me. She got the results from Will's test and he does have Downs". Tears just flowed. I couldn't stop them. I knew in my heart that he did. I knew from the first moment I thought it, but now it was my reality. It was a reality that I didn't want to truly face. He continued on, "He has the most common Downs, Trisomy 21." Tears continued to flow. "This is your Will God . . . he is yours." I said over and over in my mind. I don't know if I was trying to convince myself of this or if I just needed to keep saying it to remind myself of its truth. Bobby and I prayed together . . . I found we would do this a lot over the next few months. Now we had to tell the kids. . .
