Milestones

"Charlie is all mine," I told my four year old Ellie.

"No Mommy, you have to share (pronounced chair) him!!" Ellie stated forcefully.

"No, Charlie is mine!" stated my husband.

"No Daddy, you have to share him!" Ellie countered.

"Why?" asked Daniel.

"Because everyone will love him! And because he doesn't like you that much," Ellie explained.

Ellie & Charlie

The logic of 4 year olds can be entertaining as well as insightful. We hope that everyone will love our Charlie; it almost feels like everyone already does and for that we are grateful. We are also thankful that Charlie does like his Daddy, despite Ellie's statement.

We've passed the 2 month mark and Charlie is doing well. After his first couple of sleepy weeks, he finally got down to business with nursing and has been eating well ever since. He's gaining weight at a steady rate and has made great strides in his head control. After a few nights of sleeping all the way through the night at 2 months, he moved from the bassinet into his own bedroom and has been sleeping well there since. 

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He's had a few regular visits with his pediatrician and a first visit to his ENT (ear, nose and throat doctor). An ENT doctor is important with Down syndrome as many/most DS patients have narrower passageways - tiny ear canals and nasal passageways. It's more common for babies to experience fluid buildup, or as they get older frequent ear infections. It can also be a little harder to breathe, so we make sure to keep his nasal passageways clear with an aspirator (or as we refer to it in our family, the booger sucker). The doctor also explained Charlie will probably face some form of sleep apnea, but likes to wait to do a sleep study until the age of 5 as long as there are no issues before then. 

Charlie was accepted into Early Steps (aka Early Intervention), a program that works with kids ages 0-3 that have significant developmental delays or an established medical condition that will likely result in a delay. They evaluate your child and then set you up with a therapist(s) to give your child the best chance to minimize or overcome those delays. 

All that aside, we are doing well. Everything feels pretty normal, including the chaos that comes from being the mother of a 4 year old, 2.5 year old and 2 month old. 

I find I don't often reflect on the fact that Charlie has Down syndrome. It's a part of who he is, and he is a part of our family. It's our "normal". However, I do have moments, often unexpected, where something will hit me out of left field. 

My brother and sister-in-law welcomed their first child, a son, into the world about a week and a half ago.

Charlie and his new cousin, Xander

It is a precious thing to see people you love become parents when you know the many joys that are ahead of them. But I had a difficult moment when I saw my nephew holding his head up with more control than my 2 month old Charlie has. I picked up on another "skill" - I call it that because that's what my friend, an occupational therapist, calls it. My nephew was bringing his hands to center, or midline. I didn't know that was a thing until they asked me if Charlie was doing that when we did his evaluation for Early Steps at 4 weeks of age. Charlie has started doing it recently which I am happy to see, but it brought an emotion to the forefront that I didn't know was present. I guess if I was to be honest, it was jealousy. I was jealous that my nephew was doing these things on his first day of life when my precious 2 month old is still working on it. Jealous that it came effortlessly to this sweet newborn making me feel silly to call it a "skill" because it requires no learning period for him to do these things. Granted, pride and love and jealousy can occupy the same space. This wasn't an angry, resentful jealousy. I am thankful that my nephew already has such strength and development. I want to see him live up to his fullest potential in life. But it makes me consider that these 2 little skills that Charlie has had to work for at months are just the tip of the iceberg. 

Charlie is going to have many developmental delays in life. That is a fact. It will take him months or even years to acquire skills that come naturally to most children. He will have to work hard to gain many or most of these skills. It makes me take for granted less those abilities that children seemingly effortlessly acquire. 

My other nephew is almost 5, and he has difficulties eating. He has trouble chewing and swallowing his food.  He has undergone lots of testing and therapies to try to determine what the problem is, but his progress is achingly slow. My sister has shared with me how difficult it can be to watch other children eat, to watch them chew and swallow their food without thought. She and her husband are constantly prompting their son to chew, working constantly to get enough calories into him. I had no framework to understand this feeling until that moment in the hospital as I watched my newborn nephew. My sister and I spoke on the phone about this and she put it well. She said it's hard to watch other kids do something that your kid cannot do. 

I want Charlie to do as much as God has planned for him. I want to help him develop and grow and live up to his fullest potential. I will probably celebrate each milestone he accomplishes in a way I never did with my daughters, because of the time and effort it will take him to reach those milestones.

(If you read this post before and it seems different now, my originally published draft disappeared and I don't quite remember my final version...but I think the gist of this post remains the same :-)