Special

After Harper was born, one of my main worries about having a third child was that it would have some kind of disability. I figured, I had two "normal" children, what were the odds of having a third?

When Cyrus was born and we encountered all the issues with feeding at the beginning of his life, I knew this worry was valid.

This little one has thrown me for a loop his entire life. The whole 15 months of it!

We recently found out that he has a genetic disorder called SETBP1. In a nut shell, Cyrus is missing one copy of the 18th chromosome. The implications are many, and varied, including motor delays, developmental delays, hypotonia (low tone), and expressive language delays. So far we have identified these to be accurate for Cyrus.

At his one year appointment, the pediatrician began referrals for him to see various specialists, as well as have a genetic test. This resulted in him getting Occupational Therapy, and Physical Therapy. While he will most certainly have difficulty verbalizing we have not yet begun speech therapy.

When I say the implications of a SETBP1 deletion are varied, I do mean to the greatest degree. There are children who speak at a later age, think 3-8 years old. While there are still those who are never able to verbally express themselves.

As of yet, we have no idea where Cyrus will land on that spectrum. The fact that he does respond well to the therapies he is receiving is a great encouragement.

Right now, I can only cope by learning sign language as quickly as possible. I'm not able to sit and think about the worst case scenario. However, I'm also not able to pretend he is OK. The most helpful responses I have received from friends and family have been those who simply say, "I'm sorry" or "How are you feeling?" or "Well, I'll learn sign too!" It is not a help to me to hope and pray that this somehow fixes itself. This is the way Cyrus was born. This is in him. It's a part of him. He is perfect just the way he is, and he does not need his genetic makeup fixed. What he needs is support. He needs people to talk to him, all.the.time. He needs people to sign with him. He needs people to believe that the way he is is the way he was meant to be.

He needs a tribe of people around him to see the perfection and beauty of who he is, and not wish he was something else.

And that is what I intend to be.