The Good, the Bad and sometimes the Ugly Side of Rett Syndrome

Like many of my posts, this is a bit all over the place.

I started writing different posts over the holidays. I published none of them. I decided that “the 24 hour hockey rule” should work with everything in life, specially dealing with people who don’t have special needs children.

But for everyone to love Ema like we do and share in her joy, accomplishments and gains, you must also understand everything she goes through. Whether that be the good or the bad. (some times ugly in Ema’s case)

You can tell a lot about a person by how they treat Ema. You can also tell a lot about a child’s parents by how the child reacts to Ema.

As positive as we try to be all the time, Rett Syndrome is something that is never leaving our family – ever. Sometimes you can’t but not feel sorry for Ema and our other children.

You read everywhere that the world is embracing special needs and we are moving forward. After being in the system, I don’t see it that way at all. So much of it is government hype. Medically and technically we are moving ahead, but socially we stay on the same level. I see more and more self-absorbed people everyday through Ema’s eyes.

When you first get a diagnosis, everyone is right there with you. You find out fast who your true friends and family are. What many don’t realize is, the journey after the diagnosis is when you need friends and family even more. Rett syndrome never ends. It becomes part of your family. We might be able to accept it easier and learn from it as time goes on, but life for Ema doesn’t get easier.

As much as we know about Rett Syndrome, we really don’t know anything. Every child or adult with Rett syndrome, even with the same deletion does not have the same symptoms or issues. We know what to watch for, but we do not know what to expect – EVER.  Our sleepless nights have not gone away, they get better but then return. Ema’s crying and laughing spells continue. Seizures continue. With no speech it is difficult to figure out what is wrong when she is hurting… And we are no different then the thousand’s of other families around the world who also live with Rett Syndrome, except Ema has less heath issues then some.

Even though health issues are frustrating and maddening, I can at least process that in my head.

It has been very hard for Lionel and I to watch people leave our side. It is also difficult to have family criticize us, saying it isn’t as difficult as we make it out to be. This is by far the most difficult thing we have ever gone through.

Everyday is difficult, but holiday time (any holiday) is so much worse. (It is Ema’s birthday at the end of December.)

Keenen made a comment to Lionel at a family gathering over the holidays.  This event was too long of a day for Ema to spend in a large group, so Lionel, Keenen and Mackenzie went alone. When they sat down to eat, Keenen said “Dad. No one even asked about Ema.” When your child say something like that, reality sinks in very quickly and your heart hurts. As much as we try to let people’s comments go in one ear and out another, sometimes it just isn’t possible for it not to hurt.

Comments like ” We didn’t call her for her birthday, she doesn’t understand anyway” can’t be farther from the truth. Ema understands everything.

….And that is if they comment at all.

I have had families with girls Ema’s age reach out to us. They welcomed Ema to join them in activities. One was swimming and one was their daughter’s birthday party.  Even though we couldn’t get to either, those gestures meant more to Lionel and I then they will ever know. When invitations go to ALL the girls in her class, we know it usually doesn’t include Ema. The feeling of having one of your children left out hurts. The parents that included Ema are truly very special and kind people.

We are not looking for people to be at our door step. We just need a simple phone call (Don’t leave a phone message; I don’t listen to them!), text message or email.  Some friends have said straight out…”we don’t know what to do for you? Please tell us.” We appreciate knowing they are there, if we ever need them. Sometimes those emails or text messages are the  boost that we need to get through a day. When our neighbor dropped off a hot meal for us before Christmas, it was like winning a lottery! I cried while eating my meal.

These are all things I wish I knew before we had Ema.

Friends and family who have remained connected to us through thick and thin are the ones we know will be with us for life. Those are the ones who make us feel like ‘NORMAL” parents. Those are the ones we can let our guard down with. The ones who keep us going. You know who you all are – THANK-YOU from the bottom of our hearts.