A little piece of heaven

A bit of an update on us:

* The boys have been back in Irvine since Sunday and are having a blast! Nathan has been remarkably tolerating 4 hours of suit therapy plus 2 hours of HBOT every day. I never thought he’d have the stamina – he never ceases to surprise me! He is THRIVING under his daddy’s care! (sniff sniff I’m jealous 🙂

* The changes we have seen thus far: COGNITIVE improvements! It used to take several attempts to teach him something, now we can show him something once or twice and he gets it! Physically his trunk and head are stronger. He is trying to talk more, and is saying things a bit more clearly. GO NATHAN!

* I am still in house redecorating heaven! My mom and I have been bonding over this whole project and have been having a BLAST. Very soon I will be ready to unveil some pictures! So instead of using this time “off” to rest I have been working really hard on the house and on catching up with work. No rest for the wicked :-).

* Lots of people have been calling/emailing about Belle. The truth is – I have nothing new to report. I saw my OBGYN last week and he just did a quick ultrasound and sent me on my merry way. Since I decided against the amnio, I think the rest of the pregnancy will be uneventful and I just have to wait and see what happens when she is born. At that time we will know if she has Down Syndrome or not, and what sorts of issues, if any, the echogenic foci are going to cause her. So for now I am treating this as a normal pregnancy and enjoying this precious time with her in my womb.

* I have almost everything ready for her! Today I bought her car seat. I already have her stroller, crib, changing table, clothes, blankets, baby carriers…everything! Now I just need a baby to put into all of these things!

* Things I have been working on for Nathan:

– A spect scan. After he is done with his 40 HBOT treatments I am going to have him get a spect scan so we can get a baseline of how his brain functions. Unfortunately we should’ve done one BEFORE he started so we will not be able to compare before and after images. But this will become the baseline that we can use as a comparison point when we do other therapies. This way we can stop guessing about whether a therapy is effective or not and we will have direct proof with the spect scans.

– My father in law has decided that Nathan needs to have a high-pressure hard HBOT chamber at home. He is contacting companies and individuals and looking into grants so he can get one for Nathan! How incredibly awesome is that!

– We have an appointment with an augmentative communication expert on Friday. Time to get back on the “communication” bandwagon and get a consistent method of communication in place. I’ll share more about the appointment this weekend.

Okay time for bed, have a great evening everyone!

For those of you who haven’t seen Kung Fu Panda about 350 times like Nathan and I have, you wouldn’t recognize the title…It happens at the very beginning, when Panda is dreaming, and he defeats a host of bandits, he casually mentions to his adoring fans – there’s no charge for awesomeness…or attractiveness.

This is one of my favorite all-time scenes (I know, I need to get a life!).

It reminds me of Nathan, and all his buddies with special needs, and all their mother warriors.

Every day I spend time reading through about 30 different blogs of families with special needs, and about 5 Yahoo groups, where these families share their experiences. And every day I am awed at how amazing these children, and their families, are!

So today I just wanted to take a moment to revel in sheer awesomeness…and attractiveness!

From 2010-02-25

From 2010-02-25

Someone said these words to me today. At first I found myself blubbering about how wonderful Nathan is and everything I’ve learned through him. I was trying to justify why my life is so wonderful. Sure sure she said. Humoring me. Deep down she felt she knew “the truth”, no matter what I said.

After a little while I was angry. How dare she.

Then after a while longer I felt sad for her. In fact I just felt plain said. I realized that that’s probably what most people think when they look at us, at our life. Poor little boy, he is so handicapped. Poor them, they have to live with a severely disabled child who can’t walk or talk. It’s what I would’ve thought before I had Nathan. Just like most everyone else, I was so ignorant about this life, this situation. And I realized that’s what people think when we’re walking down the mall and they look at him and look away. Pity.

How sad.

I don’t claim that my life is better than yours. I don’t claim that my life is better than anyone’s. I don’t claim that having a handicapped child is better, or worse, or special. It’s just my life.

But what I will say is that although initially unwanted and unexpected, this life is far better than anything I could’ve dreamed of for myself. Before Nathan I dreamed of having a successful career, lots of money, a brood of brilliant happy kids, lots of traveling. Yes I wanted to be a good person and do good for the world, but that came after my other dreams and priorities mentioned above. If I had time.

Today I want more than anything to be a good person. My biggest wish is to see my family happy. And my 2nd biggest wish is to help others. I don’t care for money, or career, or traveling, or success. I understand that happiness is a state of mind and comes from the simplest feelings of gratitude and appreciation.

Today I understand the value of simple pleasures. Of being happy just because. Of not needing external things to be happy. Of deep acceptance. And I find that the acceptance that my son has taught me is starting to extend outwards, to other people in my life. My life has changed significantly in the last 3.5 years, thanks to my son. I feel truly, completely, and fully blessed for the changes that my son has brought to my life.

I could sit here and feel pity for others who haven’t had these opportunities. Who don’t understand the things I’ve learned so deeply. Who can’t experience the joy of simple acceptance, of being grateful just because your child is alive, of not stressing over minute, unimportant issues.

But I don’t. I don’t judge. I don’t feel my life is better than yours. I don’t feel my life is worse than yours. I just feel grateful for the life I have.

But I know it’s ignorance that makes people think that way. I know it’s because they haven’t walked in my shoes. I know it’s because society has taught us to value normalcy, to value success, independence, money. It makes me sad. So very sad.

Because, truly, fully and completely – I wouldn’t trade a moment of my life with Nathan. I do feel like the luckiest person in the world, how did I get so fortunate to have such a pure, beautiful, angelic soul in my life. A little person who teaches me everything by doing nothing. But I’m sure every mother feels this way about their child. So maybe my experience is not different to anyone’s. Except I can say that I have learned what is truly valuable in life, and don’t waste time stressing over unimportant things, the things most people stress about.

Yes, I fight for him. I fight to keep him healthy. I fight to keep him strong. I fight to give him opportunities for a bit of freedom and independence. I used to fight because I wanted more “normalcy” for him. But now I fight to keep him healthy, to keep him strong, to keep him happy. Because I want him here with me for as long as I can possibly have him. Not because I want him to be like everyone else. But he has taught me to accept, so I treasure every moment that he IS here with me, in the here and now.

I really really don’t envy your life. I don’t envy anyone’s life. I truly deeply love my own. I don’t want you to envy my life either. I just want you to be happy in your life and let me be happy in mine.