Another Magical Moment

I started this blog to inform family and friends all of our "goings-on" with Anthony a few years ago. I used to send these huge emails to "update". He always has something going on. Then one day I thought - maybe not everyone wants to know. Then began, the blog. Where you read if you want, or not. Your choice. Then I thought of the name. Because at our house, there are soooo many moments, with all of my kids, that make some great stories - so I put them here.

This is another one of those times.

As I sit here with my eyes glistening with tears, and my heart so full I can actually feel it swelling through to the limits of my entire chest, I feel such a sense of peace and hope I can hardly grasp it. Tonight, there was a moment I never want to forget. One that came and went in a span of just a few minutes, but will resonate with me forever.

Like this one - where I took Anthony on his first Merry-Go-Round. He held on tight to my neck, his little hand clutched in my hair through most of the ride. But he loved it. And so did I. The wind rushed against our faces and we flew instead of just rode that horse. I was a regular mom here. Just a mom taking her son on a horsey-ride. It never occurred to us in this moment that we were "different".

This is one of my absolute favorites too. This was on his first birthday. We were just a mom and her first child. Spending way too much money on fancy photographs, because he was our first. And I love that we did. Because this day- I felt beautiful, motherly, and loved. All the dreams and hopes I thought weren't mine to hold, because we were different, on this day -I did. That day I held them all in my arms, because that boy was, and always will be, my son. First.

And these little faces, caught by my photographer friend for a local Down syndrome support group's marketing, are of my son. Precious as always, but chosen for his "difference" to educate and create awareness. He has changed so much since these. I thank God that I have them so that I can remember that young little baby face.

Seriously - is he not THE cutest???

And then there are times like tonight. Times where because he is different, they are that much more special.

Most of you know he has a pretty serious verbal disorder, that is separate from his Down syndrome, that makes communication, understanding him, and essentially relationships with him, very difficult.

One thing they don't tell you, is that on that extra chromosome, are these little opportunities for miracles. Very big miracles.

The ones others easily take for granted, but for us, are glimpses into heaven.

Maybe you have a child you could just hand a pacifier. Ours was Bella. You just put it in, and off she went with it. However, when Anthony finally used a pacifier - we celebrated. He was in the NICU for 2 weeks at this point, and when he accomplished this task, we knew he was just that much closer to coming home. It was a big deal. We went out for dinner!

It was a very big deal when he finally nursed, after 4 months.

Another big deal when he walked, after 3 years.

When he said "Papa", his first word, at 3 1/2.

When he walked up those stairs - and alternated his feet! At five.

When he rode a bike at 10.

When he was Potty Trained!!!!!!!!! At 12. (See previous post).

The thing about him, and so many of us, is that when he has to work that hard for things - it is a mountain, not a milestone. It is bigger than a developmental step. It is a LEAP! And like us, after difficulty, we treasure the moment we are free from it.

I treasure this moment like all of the above added together.

Tonight - I had a great conversation with him.

Did you see that?

A CONVERSATION.

The only thing left on my "checklist" is his speech. I have always had this list. I'm sure you have one too. The "everything will be better when..." list.

The one I have had for him had walking, potty training, alphabet, reading, riding a bike, etc...

Speech has always been on it. But I have been very reserved on that one. Not wanting to be "disappointed" if it never came, I have left it there with hesitated hope.

I have even been afraid to pray about it, because what if it doesn't come? What if the answer is no?

But then, I let go of all of that and am now in the firm standing that, with or without "words", my relationship with him will not be based on that. That I need to be happy now, not "when..."

And lo and behold, once I let go, I got what I wanted.

Or maybe I just let go of what I was expecting, and really just began to enjoy what I already had.

I already have a relationship with him where I can understand him. Where I do know what he wants. And we can talk to each other and grow closer everyday. It's hard, but it IS there.

Tonight, we had a back and forth interaction about his birthday. I wish you could have SEEN the attempts at him saying June 9th. That he wanted to go bowling, and all the friends he wanted to invite. We even made a list. With every word he lit up in his face. With every name, I knew who he was talking about. With every sound, there was an effort like never before. He and I talked about his birthday. We were a regular mom and son discussing birthday wishes and celebrations for his next birthday. Yes, it is a ways off, but that's the fun "typical" part of it too. We even referenced his age - 13!

But this was no "regular" conversation. Because we ARE different. This was one of those moments of magic. This was an extra chromosome miracle that only we get to have. This was a mom, connecting to her child. This was everything I keep dreaming of. And right here, right now - I am in the presence of it, and him, and the wonder of it all.

Yes, I will continue to drag him to speech, practice it everyday, and even more... I will continue to pray. I want everyone who comes into his life to have connections like these with him. I want you to feel the power of relating to someone that has so much to give. I want you to feel this blessed. I want to share him with you.

Another really cool effect from working this hard - ohh, it is such a sweet thing - is the realization that after all the hard work and time and energy - it was worth every ounce of it.

Because you find yourself, living in a moment of greatness, being a witness to something miraculous, because you know how hard this is, and how long it has taken -and then just when you think you can't take another moment because it is that overwhelming -

He writes "mom" on the invitation list.