Fitting in

When I first brought Jaxson home from the NICU, I was super excited to meet anyone and everyone that had a Down syndrome child.

We got involved with all the Down syndrome groups, and went to many activities.

When I brought my 8 month old baby home from the hospital after spending 4 months on his deathbed, intubated, drugged, it was a much different story. I had brought home a son that not only was now addicted to sedations meds, being weaned with methadone and ativan every two hours, but one that had suffered severe brain damage.

After the first few Down syndrome parties with people asking us why he couldn't do this or that, we just stopped going.

New diagnosis after new diagnosis, just put us farther and farther from our Down syndrome friends.

After I found blogging, I felt ready to jump back in to the Down syndrome world, and met many great new friends.

But I had a realization the other day, after talking to a friend that happens to have a DS child more like Jax. We had been on a fellow DS blog, and realized that we didn't know any of the adorable DS kids on her blog.

Not a single one.

We can join support groups for many different things. Seizure, congenital heart defect, CP, Down syndrome. But not a single one of those groups can totally relate to us. We fall into a very small category of medically fragile, and I'm finding sometimes that can be a pretty sucky place to be.

I know its hard, and maybe even boring, to read updates and what may be going on with Jax.

There's no really good way to help people understand what we go through. He may look good in a certain picture, but what go's on inside that little body is a constant battle. Every breath counted, every heartbeat watched. An ambu-bag hangs on the corner of his bed, because there have been many times I've had to push breathes into my son's lungs. Many times I hold a grey boy, because he's just aspirated, and struggles to catch his breath again.

Many times he should be hospitalized, as a matter of fact, we spent Saturday night in the ER. They talked about admitting him. I said no way.The only reason we were even in the ER was because it was a weekend and we needed testing.

I know when Jax has to be admitted. It may be far after he should be, but I have chosen quality before quantity with Jax.

I'm so thankful for my DS friends that have stuck by us. Who love Jax for who he is, even though its drastically different from the rest.

Now we do have Arina who is more typical, but we can't forget that she wouldn't be in our home if it weren't for her amazing big brother.

The big brother that brought Down syndrome, and so much more, into our lives!