A little piece of heaven

Ramon just sent me this video of Nathan, which he took back on Sept 29, 2 weeks into his CME treatment. That was my first day at the hospital so he was at therapy with the nanny.

What’s amazing about this video is that he was able to stand up in the air only 2 weeks into his treatment. That day Ramon was so excited. Aerial standing is the beginning of independence; he felt so much potential at that point.

Unfortunately, it’s been hard to get Nathan to replicate this exercise. We were hoping that by now he would’ve mastered it and would’ve moved on to harder exercises requiring more control. But he’s been sick twice, and for other unknown reason, he just hasn’t been able to replicate that level of progress.

But why am I sharing this now? Because it’s there. I talked about miracles earlier. Seeing this video after writing that post feels like a reminder – Marcela, it’s possible. He did it already. He can do it. It’s in him.

PS. Oh how I miss his long hair, I can’t wait for it to grow long again!

Today Isabelle Tara is 16 weeks pre-old. I can’t believe I’m entering my 4th month of pregnancy! It’s gone by pretty fast!

And the madness has begun:

From 11-16-09

Thanks Karym!!!

From 11-16-09

Thanks Sonia!

I was honestly not expecting to be pregnant with a little girl. But with time I am getting more and more excited about the idea. Little girl outfits are soooooo cute!!! I haven’t started buying anything yet, but hope to start collecting bits and pieces here and there over the next few weeks.

I am feeling quite wonderful. The tough, 1st trimester yuckiness seems to be past me. I have more energy and am feeling stronger. I am hoping that the rest of Isabelle’s journey in my tummy will be uneventful and peaceful!

I’ve been thinking a lot about miracles in the last few days. I met a little miracle boy on Saturday. He has agenesis of the corpus callosum. This can be very debilitating, and of the few people that I know who have children with ACC, they are very impacted by this brain malformation. But this little boy is doing incredibly well. He can walk, run, talk, normal intelligence, normal socialization skills. He’s truly a miracle.

Then I read about little Stellan. When I started following their blog a couple of weeks ago, he was having life-threatening problems with his heart. In fact he flat-lined during one of the interventions. Shortly after, however, he underwent an incredibly complicated procedure and they were able to completely fix his heart problem – forever. From dying on the table to complete recovery in 3 days. Another miracle. You can read their story on their blog: My Charming Kids.

Stellan’s mom wrote a post wondering about miracles too. She wondered why her son got his miracle, while other kids don’t. Why does this happen? Why is it that some kids with holoprosencephaly can walk and talk, while others are so severely impacted? Why can some kids function with half a brain, while others have a perfect looking brain but severe problems?

Some of us sit and wait for a miracle. Others do everything in their power to create a miracle. Others accept that their kids are perfect the way they are and don’t need a miracle. Yet others believe that their kids are perfect yet still wait for the miracle.

I’ve already seen many miracles with Nathan. His every breath is a miracle. His intelligence is a miracle. The fact that he survived HPE and meningitis is a miracle.

And even though I am a miracle veteran (Faith’s mom coined this phrase), I still sit and wait for another miracle. Because have no doubt, what I am doing now in Chile is asking and waiting for a miracle. Think about it for a moment. Think of Nathan’s current physical development. It would be a miracle if Nathan goes from Raggedy Andy to becoming a functional (in worldly terms) child.

And here I am, waiting, waiting, waiting. Learning patience. I wait because I know the miracle will come.

Am I ungrateful? Am I selfish to ask for more when I’ve gotten so much already? Have I truly accepted him if I want him to change? These are the questions I ask myself, for which I have no answer. They are part of the journey, and I hope one to have answers. In the meantime, I do the only thing I now how to do – keep moving forward. Keep being an optimist. Keep waiting for the miracle.