Grey Matters

I put down the needle and thread and closed my eyes breathing slowly through my nose. I shook my head and thought "yep, this is deffinitely it." No matter how much nesting you do, it is never enough. The last baby blanket would have to wait. I went up stairs to tell Joe. "Two weeks early?" he said to me, the look on my face answered his question. "You better get that car seat out of the garage and clean it up, quick." Five minutes later he came to me with a "sorry about this" look on his face. "Uh...the car seat has been chewed on by mice." Living by orchards you can't avoid mice. "Just forget it." I said. Moments later his mom showed up, sleepy, it was about 1:00am. We were off. We stopped by the red box to get some DVDs for the hospital. Joe stood in the freezing wind waiting for the DVDs, cold but excited. I watched him shiver full of love and anticipation, with no idea what we were about to embark on.

Once the doctor and midwife arrived we had decided to try to turn the baby, he was breech. As they did the version ( a procedure in which the doctor physically turns the baby by pushing on the mother's stomach) the look on Joe's face told me that this was much more invasive than we had thought, luckily I already had an epidural. The baby tolerated it well at first, then his heart rate completely disappeared. That's when everything went into slow motion. It was just like a T.V. show with people yelling and running. My bed was barrelling down the hall and tears were streaming down my face. I just repeated over and over "please don't die." Joe was getting dressed and I was alone. The midwife kissed my forehead. Seconds later Joe was at my head and the c-section had begun. "Am I supposed to feel this?" I said through uncontrollable shaking. The anesthesiologist, obviously panicked, inserted a large syringe into the IV. The sharp, dull pain was still there, but the shaking was so all consuming that I didn't notice. Soon we heard a faint, scratchy cry and my fears fled away. I was completely relieved. Joe said through tears "WOW, he has a ton of hair!" I thought "uh-huh, all of our kids have a lot of hair", then they put the baby next to my face. He looked ethnic. I mean TONS of BLACK hair. Shocked, I smiled, I think. I smiled inside at least. They whisked him away and I sighed with relief. After what seemed like hours they finally rolled me back into the delivery room. It was about 5:00 in the morning at that point. We groggily called family, who didn't believe us, but knew we would never get up that early to play a practical joke, so congratulated us with hoarse well wishes. At that point all was well, and we thought that was how it would stay.
I laid in my recovery room in and out of sleep when Joe entered with the video camera looking pensive. "How is he?" I said, "He's fine, he's fine. But there are a few issues." he said. "Issues?" I asked. "Well, his hands are turned out kind of funny to the side. And his left foot is turned out too." I felt a wave of sadness rush down my body. I pictured him in 1st grade being teased, limping around the school yard. I began to cry uncontrollably. That was the point I knew I had a special needs child. The loss of the perfect child I had imagined felt like a death, at first. Surprisingly, it didn't take more than a few minutes to accept that fact, and be OK with it. Throughout the next few hours Joe gave me updates about the baby. The nurses were noticing other strange things, but the most prominent was the floppiness, or muscle weakness. A few hours later the pediatrician came in looking solemn. "So," he said "there are some things that lead me to believe that there is some sort of syndrome or disease in your son. We need to run some tests, it could be Prader Willi Syndrome, but I think it is Spinal Muscular Atrophy." "OK, what is that?" we asked. "Well, it's a degenerative muscle disease, that causes this severe muscle weakness that we are seeing." he answered, "And what is Prader Willi?" we asked, "It's a disease where the child has turned out hands and feet, severe weakness, and extreme obesity because they don't have the chemical that tells your body that you are full." We sat there stunned, but we had already accepted that he was going to be special, so we weren't completely devastated, yet.
The next evening we sat watching a stupid flick trying to keep our minds off things. The pediatrician came in and told us he had run the tests and we would have to wait a couple weeks for the results. "Do you have any questions?" he asked, and I asked the question that would change everything. "What is the life expectancy for kids with this disease?" Looking uncomfortable he answered "Well, because of the degenerative nature of the disease the life expectancy is about 6 months to 2 years." I felt the blood rush out of my face and tears welling up in my eyes. The doctor was also welling up and left the room abruptly. I completely lost it. I said "I can't do this!" over and over. Joe held me and cried silently. Joe called the bishop for a blessing, he came right away. He counseled us, talking about Abraham and Issac. And I remember thinking "except that Abraham got to keep his son, I don't" We finally drifted to sleep with the lights on, watching mindless, funny shows on our ipods.

The next morning I woke feeling dead inside. I had ordered everything on the breakfast menu so Joe could eat too. We had a little chuckle about the enormous pile of food and what a pig they must have thought I was, but that was short lived. I said " I don't want to take a shower, what's the point." Joe said "You know you always feel better after you get ready." And for some reason that really struck a cord with me. I just knew that I had to keep going right then, or I would somehow stop forever. So I did, and he was right, I felt better.

That day I held him for the first time. I sat in a rocking chair in the level 2 nursery as Clair de Lune played softly. I sobbed as I looked at his sweet, beautiful face. I got this strong impression that he was special, almost like he was too good for this world. I suddenly felt really privileged to be his mother, and confused that such a special spirit would be sent to me.

We seemed to settle into the news astonishingly well over the next few days. The spirit took over, and suddenly we were better people. We loved each other a little more, we loved our other kids a little more, we loved everyone a little more. There were many visits from family that helped keep our mind off the ticking time. There was actually a lot of laughter and tender mercies, including an ongoing joke about Engine Joe and his side kick Prader Willi, no offense to those who have Prader Willi syndrome.

Telling the kids was scary. We put it off for many days, and finally decided it was time. We gathered the little ones on my hospital bed, Miles 9, Simon 5, and Mila 3. We explained the the baby was special, too special to be here for very long, that Heavenly Father needed him to come back soon. Mila didn't get it, Miles was somber, and Simon teared up a little, he is the most tender-hearted of them all, and loves babies. Overall they took it well. They understood. They seem to have a better understanding than most adults.

The day came for us to return home. He only had to be in the hospital for a week and we stayed there with him the whole time. As we drove home Joe said "Not exactly how we pictured it, huh." I cried and nodded. We brought him into the house and he brought with him a sweet, special spirit that people always comment on when they enter our home. We felt that this was going to be a short, but wonderful journey.

A few days later the doctor called with the test results. I knew it was SMA (Spinal Muscular Atrophy). The doctor said "The results came back negative." I was stunned into silence for a moment. "Negative? Are you sure?" I said finally. "Yes, I am as surprised as you." He said. I called Joe immediately, his reaction was the same, stunned silence. We called everyone we knew over the next few days to pass along the good news. There were tears of joy all over the place.

"Where do we go from here?" I asked the doctor at the next appointment. "Primary Children's" was his response. Oh, Primary's, how I've come to see you as a second home. The baby was set up with Neurologists, a team of Genetic doctors, sleep doctors, speech therapists, physical therapists, occupational therapists and the list goes on. He has had many, many tests. And all of them have come back negative. In the process he has had a G-tube placed to feed him, sleep studies to help him expand his lungs when he sleeps, and many other procedures to prevent his condition from getting worse. He has made huge improvements. He is getting stronger everyday. The doctors say most children with his symptoms don't live beyond 5 years old, that being said there is no prognosis.

This is Greyson's story. He is undiagnosed. At first I said I would never do it again. But now, selfishly, I say I would do it again. He has taught me so much already in the 10 months he has been with us so far. He has taught me to be a better person. His example keeps me going everyday. He never complains, he rarely cries, he is ALWAYS good. He is special. I know I might not have him for very long, but the lessons I've learned are invaluable. He is amazing. I cherish every moment I get to spend with him. I feel so lucky to have him in my life to show me what matters.

So this is my first entry. It is long and dramatic, but don't worry, they won't all be. I hope I can keep everyone informed about Grey's progress this way.