Maddox was going to be born during the winter and we decided not to take her on any major trips until spring when the germies are gone. By spring time, she would be a few months old and we thought a nice trial trip to Mackinaw City for some shopping would be a great place to start on a nice spring Saturday.
As you have gathered, nothing really goes according to plan anymore.
Our first trip was not in the spring, Maddox was not a few months old, there was no trial trip, and we definitely did not get to go shopping.
Instead, our first trip was when Maddox was 5 weeks old, during a snowstorm, four and a half hours away to Ann Arbor.
Below is a journal entry from our first of many appointments.
I had packed extremely light and it wasn’t five minutes into our hotel room that I realized I must be a new mom. I had taken Maddox’s diaper off to let her bottom air out and she peed all over her changing mat, on the bed, and through both layers of my clothing.
I debated on included this next comment on my blog but the truth and life of a new mom must be shared. Deep sigh.... Yes, I took those shirts off, hung them over the blower on the heater to dry and later, put them back on.
Tonight is Maddox’s first night in a hotel. She did perfect, slept through the entire night. Little did we know she was resting up so she could show those doctors her strength, drive, and health.
The morning of the appointments, Scott woke me up and I fed Maddox. She must be a little nervous for her debut because she threw up for the first time this morning. After she was cleaned up and Scott and I were ready, Scott went down to start the car. Maddox and I had a moment, I picked her up, held her tight, and cracked out the words, “I hope you check out today.” She was sleeping but she managed to give me a big grin. That’s it, that’s the sign. I am holding her to this silent promise she just made me.
We found our first appointment at the physical medicine and rehabilitation clinic. Scott took Maddox out to get on the scale and everyone in the office turned to look at her while oooing and awwwing. I don’t know what I felt at that moment, empty, excited, anxious, embarrassed? It was a crazy stand of emotions. We are not supposed to be here.
Scott and I nervously waited for the doctor. I am embarrassed to say that I had three pages of typed questions for the poor fellow and he would have answered every single one of them but I decided to prioritize so that the rest of the patients could have a turn today. We learned that this doctor has a son with Down Syndrome and shared several personal stories. I left the appointment feeling great about Maddox’s physical development but the doctor had just opened my eyes to a whole world of questions regarding siblings of a Down Syndrome child.
From this clinic, we drove to the hospital, parked on the upper deck and like two new parents, fumbled with how to open the stroller for the first time. We were both so nervous. We found our office and checked in, only to find out we were an hour early. We attempted to find the cafeteria and ended up asking for help. Along the way we found a cute coffee shop with a sofa so we set up camp for the next hour there.
While we waited, I thought about how nice it was to blend in. Up north we are quickly becoming the family that had the Down Syndrome child. Word travels fast and stereotypes are made, one of the joys of living in a small town. Down at U of M, blending it was nice. In fact, the more I watched the luckier I felt. There was a family of 5. The parents had a girl, a boy with CP, and a younger boy. I started wondering how they took their news, what modifications would they need at their house, does their insurance cover his wheelchair, do they have a van with a lift, how do the siblings treat the boy with CP, did the parent’s dreams of a perfect family change like mind did? Mu list of questions went on and on, but I caught myself, took a deep breath and realized that Scott and I should be thankful. I need to stop feeling sorry for myself, get back on the horse, and do what I do best, which is to help other families cope. (I only wish it was as easy to do as it was to type that). To distract myself I grabbed a magazine. On the cover was a family skiing. I had a panic attack. Would we ever be able to go skiing as a family? Will Maddox be able to follow directions well enough and look out for others on the slope? Can she ride a ski lift? I realized at this moment how forever our lives have been changed. You guess it, I cried....Again.
Just before appointment time, I decided to take her to the bathroom and had my first changing table experience. THe people coming and going all had to stop and peek at Maddox. She is such a people magnet, she makes others smile. While they oooed and awwed over her, for an instant I felt like a normal parent showing off their new healthy baby. I scooped her up and walked back to the comfy couch in the coffee shop realizing again we were in a hospital and that instant was over.
It was now appointment time, the dreaded but much anticipated pediatrics genetics appointment where Scott and I find out if we are carriers of the Translocation. The geneticist comes in and Maddox decides she is starving. I tried to feed her and listen to the doctor at the same time, this was the moment I have been waiting for since January 5th and now I can’t seem to process a thing.
I remember she tried to find a diagram of the Translocation and that Maddox still has three chromosome 21’s but two fused together at the short arm of the 13th and that she will have all the same symptoms as a child with Trisomy 21. We also found out that Scott and I have normal karyotypes and we are not carriers of the Translocation. I should have popped a bottle of champagne to celebrate but instead I started crying. I had an intense amount of hope that just maybe the doctor would say that Maddox was a rare case and maybe she is only going to have the features, not the cognitive delays associated with Down Syndrome. Turns out she is a rare case of Translocation but we are to assume she has Trisomy 21. Ummm, that went in one ear and out the other. We are going to assume she is normal and treat her no different than any other child. She will help clean the dinner table with us, take out the trash for her allowance, and learn to clean the cat’s litter box with the best of them!
Next, the pediatrician came in. He assessed her and said, “She can see, can hear, is nursing, tone is good, her heart is good, what more do you want?” I take it he was pleased. We rushed to the next appointment, cardiology, at Mott’s Children's Hospital in the basement. You could tell it was the older part of the hospital. I started to get a pit in my stomach, this is where bad news happens. I just had that feeling. It was erie. She had done so well today. Was our luck going to run out?
The first thing they did was strip Maddox down and did an EKG. The wires weighed more than her, she looked so vulnerable on that table. I think for the first time ever, I felt empathy for Maddox. My heart ached. They pulled the stickers off her chest and she had red marks all over her. We are in the cold basement of this very old hospital and our daughter has red marks on her chest and is crying. I took a deep breathe and tried to take this all in. This is not what I envisioned on that beautiful day that I told Scott we were going to have a baby.
The wonderful, tall, crossed eyed cardiologist came in and also crossed his long legs. He listened to Maddox’s heart for several minutes. Oh, my own heart was racing during those silent minutes. He looked up and said, “There is no reason to redo the echo, there is no murmur.” We packed so quickly and got the heck out of dodge!! Within 10 minutes were were out of the hospital, loaded up, and leaving the parking garage.
Today was everything we hoped for and more, Maddox kept her promise and had checked out!