There were moments, in the early days following Dylan's birth, were I seriously wondered if he would have any siblings. I always envisioned having a large family. Four children was the ideal in my mind.
One night, shortly after bringing Dylan home, I sat on the couch and wept as I nursed him. I looked up and saw Rob leaning over me and he asked what was wrong. I was questioning whether or not Dylan would be our only child. I was questioning everything I had ever wanted and dreamed of in a family.
We had many doctor appointments in those early days. One was with the Genetics Department at Stanford University. If I could use one word to describe the experience it would be "comical". We checked in and waited just a few moments until about 6 people walked in! We could not imagine why there were so many young people interested in our son.
It turns out that the genetic counselor-doctor had five Stanford medical interns with him. None of them had ever seen an infant with Down syndrome. They ALL asked if they could touch Dylan's head. Rob and I looked at each other, puzzled, but agreed. Apparently, all babies with Down syndrome have perfectly round soft spots while "normal" babies always have oval soft spots. They had only read about it in their textbooks but had never seen it first hand. They each took turns touching his soft spot. This made our day. I wanted to burst out laughing!
We did not really understand what the appointment would involve when it had been arranged for us. We already knew that Dylan had Down syndrome. We knew it was the most common type: "Trisomy 21”, not Mosaic. There are differences. We knew it was non-genetic Down syndrome, meaning that it was completely random. In fact, this is actually the case for approximately 93% of all Ds births. He had also already been seen by the ENT, Ophthalmologist and Pediatric Cardiologist
During the appointment, we were asked why had we opted out of prenatal testing and a general family history was taken. They went over things that Dylan might experience some day. For example, individuals with Ds are more prone to Leukemia as a child and Alzheimer's as adults. Ear infections, hearing loss and poor eyesight are common. Low muscle tone would impact development. Some children with Ds experienced teething later and their teeth were likely to come in very randomly - we DID experience this, by the way!
Some of this we had heard prior and some of it was new, but none of it intimidated us. I think our attitude caught them a bit off guard. Overall, we were ok with Dylan's Ds. We knew why - it was the whole God factor, but they had no idea. We tried to interject our faith when we could and I can only hope we planted a few seeds.
The biggest question we had that day was, how would this impact expanding our family? What was the likelihood of having another child with Down syndrome? At age 21, I had a 1:1140 chance of having a child with Ds. Once you have a child with Ds, your chances jump to 1:100! Actually, the reported incidents of multiple Ds births to the same mother are very rare. I've met a few, but it is rare.
At the end of the day, I knew I wanted more children and so did Rob. God saw the desires of our heart and that was to have a family - a large one. We knew the risk but we also knew God was in charge and that He would see that our next child was just as perfect as Dylan was.
When Dylan was well over three, he became a big brother. God gave us Jeremy. He even made Jeremy specifically for Dylan, in more ways that I ever thought imaginable. To the naked eye his health is perfect and he is developing like any other little boy who is nearly six years old. Yet, underneath the surface is a little boy who can not father children. There was 1:7500 chance Jeremy would be born with the condition he has. Overall, he's extremely healthy. I pray daily for the spouse he will marry (if he chooses), but he will not become a father…at least, not in the traditional sense.
Once again, we had a lot too soak in. Dylan has been born with a visible disability and Jeremy with one that is unseen. Both would greatly impact their lives. They have something in common that I never imagined they would: the inability to father biological children. Dylan's is a conscious decision while Jeremy's was determined by his Maker, our Heavenly Father. Once again, a puzzle piece was being placed in the bigger picture that the Lord is putting together for our family.