Testimony - Chapter 2

Life with two newborn babies was not easy. In fact, it was really hard. The main thing that saved us was my mom. She practically moved in with us so that we could have an adult per baby and one to rest (or work). What we discovered, though, was that they had very different personalities, so taking care of them was at least manageable. Nicholas was gentle, laid-back, and patient. Olivia was sensitive, impatient, and LOUD. Did I mention loud? Livvie cried a lot. I mean A LOT. We were afraid to take her anywhere because she seemed to be only comfortable at home. So I took Nicholas all over the place with me because as long as he was held, fed, and clean - he was content. Livvie was happier at home where NOTHING CHANGED.

So as long as you anticipated Olivia's needs and took care of her first, Nicholas was OK with waiting for his turn (what a gentleman). Only when they both wanted to eat at the same time would they cry together. What people don't realize about twins is that it's not crying at the same time that is the hard part, but that they cry one after another. Taking turns until you realize you will never have a moment to yourself again.

But we settled into what was our new "normal" and accepted that this was going to be our life for a little while. Our mantra was "this won't last forever" or "it's getting better every day". And it did. I got to the point where I could feed and care for the babies at the same time (in short bursts). Some of our fondest memories are of me feeding both babies at the same time on this giant twin nursing pillow we had. We were doing it! We were parents of twins!

I always had questions about Nicholas - is he too sleepy? should he be this quiet? is he normal? And for a while I was reassured that he was our dream baby to offset his spitfire sister. Corrie always had questions about Olivia - does she cry too much? does she have colic? is she normal? And I reassured him that some babies do cry a lot and they grow out of it. My deepest concerns about Nicholas were confronted the day our midwife came for the 6 week follow-up visit and told us that he needed to see a pediatrician right away. He had no muscle tone, couldn't hold up his head, and was very floppy. We had also had a harder and harder time feeding him as he seemed to have trouble coordinating his swallowing in certain positions.

We saw our pediatrician the next day and he agreed with the midwife and made arrangements to admit Nicholas to Childrens' Hospital for neurological and metabolic testing. Looking back now, I know that anyone who examined him knew right away he had SMA. However, as parents we of course were ever hopeful. Maybe they were wrong - maybe it was just a vitamin deficiency or something.

What is it like to be told your child has a fatal illness? It's like exploding internally. Your brain blows up and you can hardly understand what is being said. Your heart shatters and you're not sure if will keep on beating. Your lungs need to be told to keep breathing. I was by myself when the neurologist came to deliver Nicholas' diagnosis. I couldn't understand what she meant - was he going to die? In weeks or months? She replied, "...not weeks..." What did that mean?

After Corrie and I talked later, he went home and looked up everything about spinal muscular atrophy on the Internet. I didn't want to know what he had learned, I only wanted to believe that they were wrong. We held on to hope fiercely - maybe God will heal Nicholas and this will be just a bad memory. I remember coming home from spending 4 quiet days in the hospital with Nicholas, and it was like coming out of a cocoon. I was exhausted, emotionally wrecked, Olivia was crying nonstop, Sabrina was acting out, and my little boy was going to die. For the first time in a long time, I went to bed and didn't want to ever get out.

God met me that night because I found I had the strength to get up the next day. There were children to care for. I thought I had entered into a new level of relationship with God back when I was really anxious about how I was going to care for twins, but I continued to discover that the levels of relationship with Him are as infinite as He is. He met me in a real way when I cried out to Him. I had within me the knowledge that God is good, that he loves us passionately, and that those things do not change with our circumstances. Our circumstances don't define the Truth, but the Truth can carry us through our circumstances if we will yield to it. Every day I told Him how I felt about things and He gave me what I needed to get through another day.

The time with our babies was so rich. They were wonderfully cute, and once we got past the newborn stage, much easier to care for. We had a daily routine and we all had each other. As a twin mom who had carried both babies inside her for 39 weeks, I craved being with them together. I treasured the quiet times we spent as the three of us. Usually we had arranged it that two adults were always around to each care for a baby, but in the middle of the night I got up and cared for them on my own. We would all sit together in the dark while they had their night feed and I snuggled them both. When they were both done and sleeping again, I tucked them both into their crib and went back to bed for a while. It's amazing how during those times all you can think about is getting your sleep, but when you look back you can see how precious those quiet times were.

Olivia had bright blue eyes like a little bird. Her hair was like soft little feathers. Once she found her voice could be used for talking instead of crying, she made sounds and noises nonstop. She was always discovering how she could make a new sound. Even her favorite toy was noisy. Nicholas had big deep blue eyes like pools of water. He had a wide smile that lit up his whole face, and liked to observe what was going on around him. We used to joke that he liked the Showcase Showdown of the Price is Right, because he would either wake up just in time, or fall asleep in the swing to the sounds of beeping on the TV. He also used to like to sit in his bouncy chair and watch me in the kitchen. When he talked, it was precious, because it takes a lot of air to talk and it was probably hard work for him.

They shared a crib; Olivia's side was the left side and Nicholas was on the right. I think they liked having a cribmate, because once they were asleep, they stayed asleep until it was time for them to eat again. They were such good babies. Bathing them was easier when there was one adult for each of them, but when it was just me, I would first bath Nicholas while Olivia watched from her bouncy chair. He would be ready for a nap while I then bathed Olivia. Looking back, I can't believe I was able to care for two babies at the same time! I would triage situations - if they were both crying, then I usually soothed Nicholas first because he usually just wanted a little snuggle before going to sleep. Then I could take longer with Olivia, because she needed more help than he did to fall asleep. She was just too busy to settle down on her own.

Getting out of the house was a challenge, but could be done. Again, I would get Nicholas ready first because he was content to wait, and get Olivia ready at the last minute. Sabrina was often a big help and got ready on her own or kept the babies occupied. Nevertheless, we didn't go out all together very often, because it was so much work. I do remember Corrie, Sabrina, the twins, and I all going grocery shopping at Superstore once. We used two carts, each with an infant seat, and actually made it through the store and bought groceries! What a triumph!