"I will praise Thee; for I am fearfully and wonderfully made..." - Psalm 139:14
"I think your daughter has Down Syndrome." This is what the Nurse Practitioner told us mere hours after Hannah was born. He told us that she had physical features that were consistent with Down Syndrome. However, this was not a sure sign that she did indeed have Down Syndrome. They would have to take some blood and send it out to be tested.
Needless to say, this is not what you want to here in the hours following the birth of your child. We didn't know what to think. We didn't know how to act. We had problems coming to grips with the fact that our child might have Down Syndrome. Obviously, if she were to have Down Syndrome, this would be a lifelong endeavor. It's not like it would just go away after a period of time.
We were told that we would have the results of the tests in a few days. We were hoping to know by the time we left the hospital what the prognosis would be. Well, that didn't happen. We waited, and waited, and waited. We had a Doctor appointment set for 2 weeks after her birth, hoping to find out the results - but that did not happen. As the time went on and we were not able to get results, I tried my best to be positive about this. Perhaps the physical similarities were just a coincidence - after all, she was born 2 weeks early. She definitely did not have all of the physical characteristics that would distinguish a Down Syndrome child. These were reasons for hope on my part.
However, we received a call from the doctor a couple of days after this appointment confirming what we knew in the back of our heads but did not want to really admit - Hannah has Down Syndrome. All optimism went right out the door. We had a couple of weeks to come to grips with this diagnosis, but I know that I still was not prepared to hear it. Where do we go from here? What will we need to do differently? Are they able to tell us how serious her diagnosis is?
In addition to the Down Syndrome diagnosis, we were also faced with the fact that Hannah had a hearing problem. The hearing test in the hospital revealed that Hannah cannot hear that well. In a subsequent hearing test, we found out that her ear canals are rather small and they were having difficulty finding out just how bad her hearing is at this time. Perhaps the small ear canals could be the cause of her diminished hearing. Perhaps once her ears and ear canals grow a little bit, her hearing will improve. We have another hearing test scheduled in mid-February to see to what extent her hearing is diminished and to hopefully find out if her growth will help to cause the hearing issues to go away.
In all of this, there was some good news. Many children with Down Syndrome have heart problems. While Hannah was still in the hospital, they did an EKG on her, and found that her heart is functioning properly, and that there are no abnormalities. While that does not diminish the overall diagnosis, we definitely needed some good news and this was cause for hope for us.
Hannah is getting bigger and gaining weight. She is eating well. Her digestive system is healthy. We found out yesterday that her physical development is almost on par with normal child development. Again, some much needed good news.
Through all of this, I had to learn to ask the right questions. Initially, all I wanted to ask was "Why?" Why did this happen to Hannah? Why is this happening to Pam and me? Why can't this happen to someone else? Why can't Hannah be normal? Instead of asking "Why?", I should have been asking "How?" How can I use this to be a better Christian? How can I use this to reach out to those who are not Christian? How can I use this to bring glory to God? While these seem like odd questions in the midst of this huge trial, I needed to realize that God allowed this to happen.
Please note that I said that God allowed this to happen. He did not cause it to happen. God can do what He pleases, and in His omniscience, He chose to allow us to go through this trial. We don't know why. We may never know why. But one thing that I do know - we can handle this with His help. In order to get through, we will need to rely on God, not on ourselves. He will give us the grace and the strength that we need to get through.
Several years ago, Ron Hamilton wrote a song after he had one of his eyes removed. It is a source of strength and encouragement for me. Here is a part of that song this really special to me: "God never moves without purpose or plan, when trying His servant or molding a man. Give thanks to the Lord though your testing seems long. In darkness, He giveth a song. O rejoice in the Lord, He makes no mistakes. He knoweth the end of each path that I take. For when I am tried and purified, I shall come forth as gold." It is very encouraging to know, and to be reminded, that God does not make mistakes and that He is in control.
I am so thankful for Hannah. She is the most beautiful girl to me. While she is special in that she has Down Syndrome, she is a gift from God to us. And because of that, we will do our very best to be the best parents that we can be to her. We have every intention of helping Hannah every way we can, so that she can grow up to be as 'normal' as possible. We have the help of family, friends, and a great church family to help us and to encourage us. We have received helpful information from many people we know, and several that we do not know. This has been a tremendous encouragement to us.
Through all of this, we still have some prayer requests.
For Hannah...please pray that her growth will continue to be as close to 'normal' as possible...pray for her upcoming hearing test...pray that her diagnosis would be on the mild side and not to the severe side
For Pam and me...please pray for grace, strength, and patience...please pray that we would have understanding, that we would continue to learn about Down Syndrome and how best to deal with it
For the boys...pray that they would understand that Hannah needs more attention because of the Down Syndrome, and that this means that we do not love them any less...pray that they would continue to be good to her and help her
Thank you for your prayers and your encouragement. They do not go unnoticed.
