Day #7

These last two posts are going to be longer because Ty's birthday week is almost over! (I think I am going to add a "bonus" day.) I have listed 5 instances with random people that stand out to me. They are all different and bring about different perspectives.

1. Recently Dave had an interesting encounter with a nurse that I would like to share. My husband was reading the reports of a 10 year old boy who had numerous problems. The doctors will often call him, “syndromic” because there are many different issues going on and can’t be singled out to one diagnosis or syndrome. As Dr. Orme was describing this patient, the nurse asked with a smile, “Is he FLK?” Dave felt stupid because he had never heard that term and wondered if it was an important medical term that he should know. He stared at her blankly and said, “I have never heard of FLK. What is that?” She looked at him and kind of laughed as she said, “You really have never heard of FLK? That is the abbreviation for “Funny Looking Kid.” Without much of a pause, Dave said, “Do you really think we need to be calling a kid “funny looking”? We have medical terms to describe how they look.” She was still joking around when she said, “But didn’t you see him? He is funny looking!”

Dave is not usually confrontational in these types of settings, but this occasion he decided to make his stand clear. He said boldly, “So when my son comes into the office to visit, are you going to call him an FLK?” Taken back, she said, “Why, what’s wrong with your son?” Dave replied, “He has Down syndrome.”

2. There was an African American woman who only made it to church a handful of times in Detroit, but she was bursting with personality. For some reason Beverly and I really hit it off from the beginning. She was a total baby hog with Tyler at church one day. She wanted to hold him for the entire three hours. It was so fun to see how much she was drawn to him. He was so cuddly and sweet for her that she just couldn’t give him back. When church was over, I said to her out in the hall, “Beverly, do you know that Tyler has Down syndrome?” She stared at me with a blank expression. I then asked, “Have you ever met anyone with Down syndrome? Do you know what it is?” She shot back with, “Well, my eight year old daughter has had a lot of anxiety ever since her father was murdered two years ago. Is it like anxiety?” I seriously did not know how to respond. I was floored on many levels. I didn’t know her husband had been murdered, and, I was shocked that she truly did not have a clue as to what Down syndrome was. I just replied casually, “Actually, no, Down syndrome doesn’t have much to do with anxiety.” That was the end of our conversation. She shrugged her shoulders, gave Tyler a big kiss and headed home. Probably never gave it a second thought.
In the first few months it really was a bit frightening deciding whether or not to tell someone the truth. As illustrated by my friend Beverly, I never knew where that other person was coming from.

3. There was a wonderful older sister from Columbia in our church in Michigan who absolutely loved babies. The first time I came back to church and she saw my baby, she came right up to examine him. She said in her broken English with a heavy Spanish accent, “He is a beautiful baby. Oh, the doctor’s are wrong! They are wrong! He is perfect. Don’t worry, he is a perfect baby.” There were many weeks where she would continue to tell me the doctor’s were wrong. It always just made me chuckle. She was so sweet and loving. It was wonderful having Tyler look so normal in the beginning. For me, that helped to ease me into this new road I was being led down.

4. Three months before Tyler was born, my friend Anna had a baby girl Emmaline that was born with a cleft lip. It was a shock to Anna and her husband Nate, but mostly because Emmaline was supposed to be a boy, or so Anna had thought. I remember that first day going over to see her new baby. I did not know that Emmaline had a clef lip. When Anna pulled out the pacifier, for a minute I felt very uncomfortable thinking, “How horrible it must be to have such a beautiful baby with such an obvious problem in the center of her face.” It was a minor cleft, and would only need a minor surgery, but still, I couldn’t help but think, “I would personally have a hard time showing my baby to people and know that everyone is staring at her lip.”

Anna was a person I was excited to talk with about Tyler after we received the test results. I knew she would be open and comfortable talking with me. As I thought about her daughter Emmaline; who now just had a tiny scar from the surgery correcting her upper lip, I compared her situation to Tyler’s. Tyler’s face and skin was beautiful and appeared perfect to a stranger. But now, my baby had something wrong with each and every cell in his entire body. Oh at that moment how I wished it could have been as simple as a cleft lip.

On another occasion, a group of my friends from our Detroit branch were talking over a delicious crepe breakfast. Another one of my close friends had just discovered that her baby, a few months away from birth, also appeared to have a cleft lip and palate. Our discussion became a little more serious and I remember Anna saying to us all, “Imagine being given a beautiful mansion. It is everything you have ever dreamed.” (I am going to add my own detail of the vision I saw in my head.) “Everything in the entire house is perfect, designed just for you, more than you could have ever hoped for. You walk up to your mansion with the spectacular landscape and you just can’t wait to see it all. When you come to the huge front door, the door is a little sticky and won’t turn properly. The door knob obviously needs to be fixed or replaced. But then, your mouth drops as the door cracks open and you behold the beautiful high ceilings, the intricate paneling on every door frame, the lavish furniture and art work. Do you stop yourself and get angry and frustrated about the door knob? Are you able to look past the tiny imperfection and behold such a master piece, all for you? A gift sent from God? Of course you look past something as minor as a sticky door knob.”

The comparison was obviously between a mansion and a precious baby sent from heaven. Anna said it was hard for her to even notice the cleft lip because she was so in love with her little girl. I loved the analogy. I sat there thinking about it as the conversation moved on. I wanted to express my thoughts, but I wouldn’t dare. I was not angry, I was simply questioning. “What kind of a mansion is Tyler?” To the onlooker, the facade is perfect. Anyone would be elated to have a mansion so perfect on the outside. The door knob was not sticky or flawed. The door opened perfectly. But what was different on the inside. The mansion was still beautiful and intricate, but something was off. With closer examination, it seemed that just about everything was slightly altered from what you would have imagined. The windows may have been set too low. The doorways were not level. The wallpaper did not match up properly. The stairs were slightly slanted. As you looked closely at everything in your mansion, your heart sinks and you know that this home is different and will always be different, no matter what great efforts you may make.
I felt disturbed. How come my mansion, or rather, my baby is so beautiful on the outside, yet nothing seems right on the inside? Tyler does not have a disease that can be cured. Tyler can not have one or two or one hundred surgeries and be normal. It was moments such as these that I had to understand the reality and accept the future of my little baby. I could only be in shock and denial for so long before it was time to embrace and accept Tyler for his unique spirit.

I think one of the reasons I love my friends in Michigan so much is because of how loving they were to me during that first year of Tyler's life. They probably don't think they did very much, but they did SO much!

Last, but not least...

5. My mother. I was sad and scared to tell a lot of people about Tyler in those first few days of his birth, but I was not afraid to tell my mom. For some reason Dave and I both felt that she would be the easiest to tell and would accept the news the best, which she did. It felt so good to talk with my mom a few hours after the birth. She was wonderful. There were a lot of family members who felt uncomfortable and unsure of what to say, but my mom was genuine and loving. I couldn't be more grateful.

My mom came to visit us a few months after we moved to Indiana. One morning she came to the gym with me, mainly to hang out, not necessarily work out. We dropped Tyler off at the child watch and peeked on him through the window for a few minutes. They were just getting ready for snack. It is so adorable watching 10 little toddlers all sitting up around a small table eating their goldfish. Tyler looked so big sitting there all by himself. My mom was watching him with a smile on her face. I asked my mom at that moment, “Mom, do you ever get embarrassed that Tyler is your grandson?” I caught her completely off guard. I knew I would, and I knew what her answer was going to be, I just wanted to hear it. She said in disbelief, “Are you kidding Kristine? Why would I ever be embarrassed of Tyler. He is the most adorable little boy I know.”

I feel like my mom is exceptional in this way. I believe there are many other grandmothers and mothers who would deep down feel uncomfortable and embarrassed if that was their child sitting amongst all the other normal children. There are moments where those feelings creep in to both David and I. Not often, but they come and go from time to time. I think that is why I asked my mom. I knew she would be honest, and it brings me comfort to know that my family accepts Tyler and loves him just as much as they love my other kids. Thanks mom. I have never doubted how much you love Tyler.