Bless this bended road

Dearest Jelly,

I can remember clearly laying on the exam table watching you on the monitor during your 23 week anatomy scan. I was fascinated by your heart. I remember thinking how amazing it was that I could see all 4 chambers. It never occurred to me to wonder why the Dr. kept going back again and again to your heart.

Even when he said the words "I see a concerning shadow on your baby's heart" I wasn't really worried. We had several scares with your brother that all turned out to be nothing and so I learned long ago to not to get all worked up for a maybe.

It wasn't till the Dr. turned to the tech and told her he wanted me in for an echo the next day that I started to wonder. I know what it takes for a Dr to order a stat test and for the Dr to do so wasn't a good sign.

But I wasn't going to worry I told myself. The Dr said it could just be an artifact and till he proved otherwise that's what I was what I was going to hold on to.

Then the tech took me to the front counter to the secretary to make the stat appointment and I saw them turn and look at me over their shoulders and whisper.

No matter how much everyone tried to re-assure me. Once I saw the technicians whisper I knew we were in trouble.

More than this....there is nothing more than this

So after many appointments an echos we found out you had a serious congenital heart defect. We did our research, read blogs, and prepared ourselves for your surgery. Many tears, and sleepless nights followed as we spent the last months of your pregnancy hoping against hope that you would survive your surgery and come home to us.

The Dr's told us to prepare for two weeks (I figured three) at the hospital recovering from your surgery and then to deal the rest of your life with whatever heart issues you ended up with.

You flew through the surgery so well in fact that now that even your cardiologist says your heart issue....well just isn't an issue any more.

So you were born, open heart surgery done, and then recovery.

Everything we had prepared ourselves for till the diagnosis of CHARGE

It is a bend in the road we hadn't expected.

Kangaroo care time with Mama

So now we are on this new bend of the road and the journey is going to be much longer than we anticipated.

We seem to get a new specialist every other day. Every new Dr seems to feel the need to tell us "How serious" your diagnosis is and to "expect many hospitalizations".

I find myself having to bite my tongue to avoid the almost uncontrollable urge to say "NO SH*T SHERLOCK!". Forgive my language but sometimes it's called for.

I know they are only doing their job, only trying to be helpful. But honestly I don't find their pessimism or bleak predictions helpful at all.

The FACTS are nobody knows the future. They may have an MD with their name but they don't have a crystal ball.

We are not naive. We've done re-search. We know there are many challenges related to CHARGE syndrome that you may face.

But then you may not. Already you have shown you don't have many of the most serious complications related to CHARGE.

All the Dr Dooms in the world, with all their knowledge, don't know you. They don't know what you are capable of.

I wont let them tell you that you can't, or won't. Only you will tell us what your limits are, if you even have them.

Your Dad and I are here. We already have our armor ready and are prepared to slay any dragons that get in your way. I have a feeling that as soon as your brother is old enough to understand such things he too will be one of your greatest champions.

As unexpected as this bend in the road has been I wouldn't wish for a different road because it would mean a different you and that is something that I just couldn't bear.

It makes me think of a country song by Rascal Flatts. Forgive me if I change the lyrics a bit to better fit us.

"This much I know is true. God blessed the bended road that has lead me straight to you"

and that's how I feel.

Blessed to love you.

Blessed to be your mother.

Blessed to be on this bended road with you.