A little piece of heaven

I know this totally sucks but I can’t talk about our IEP meeting. Our lawyer asked me not to. I know I’m leaving you with the suspense and I’m sorry!

I wish I had other news to share but I don’t.

I am tired so I am off to bed. Good night!

Tomorrow is a big day. I’m jittery even thinking about it. It’s a huge huge day and I am so nervous!

We are meeting with Nathan’s school district tomorrow. But this time it’s a whole ‘nother game. They will have their attorney present. We will have our attorney present. The superintendent of the school district will be there. We are supposed to address the issues that we’ve been having. And did I mention that I am nervous? I am passionate about helping my son but I hate confrontation. Please pray for us!

The weather is gorgeous now. Today I took the kids to the park. Nathan rode his tricycle. For the first time, we left his AFO’s on so he can learn to soften his knees while he has the braces on. Typically the braces make him stiffen his knees. I am hoping that riding the tricycle will help with his hips, which seem to be getting worse. And after the park, and Nathan’s CME therapy, I jumped into the spa with both kids. Nathan’s body loosened up a lot, and Belle got to practice her swimming skills!

And talking about getting worse, the latest body part that is failing is the arms. Lately we’ve all noticed that he seems to be keeping them stiff and bent near his body all the time. He used to be able to relax them unless he was trying to use them. But now we are seeing permanent spasticity. I’m not sure yet what we will do to address this, I’ll keep you posted once we figure something out!

Now to move on to good news. Nathan is doing really well! We continue with his daily CME and he is getting stronger. His sitting continues to improve. His head control is starting to kick in. Today while he rode his tricycle he kept his head up for short periods of time. It was lovely to see! His standing is also coming along well. Juan Mario, Nathan’s CME therapist (who is also the 20 year old son of Marta, Nathan’s nanny McPhee), is doing a great job of working out the exercises. Guided by Azriel, he is really coming along and working hard on helping Nathan get stronger!

I had lunch with my dad yesterday, and he asked me why I had given up after fighting so hard and so strong for such a long time. I explained to him that I hadn’t given up hope. I believe there is a difference between HOPE and EXPECTATIONS. I gave up my EXPECTATIONS to see change in Nathan, but I still have hope that he will continue to improve, that he will continue to be healthy and happy. I believe that expectations bring us pain, becuase if they are not met if/when/how we want them to be met, we are hurt and disappointed and suffering ensues. HOPE, however, can never lead to pain. Hope is a positive mind who wishes for change, but is not attached to the outcome. So I believe I have transitiond from painful expectations into uplifting hope. We continue with a pretty awesome therapy regime – we are doing 4 therapies daily, and a few other weekly! We have just adjusted our expectations and rearranged our lives to make Nathan’s rehabilitation fit into the foundation of our life as a family.

Finally, I want to thank everyone who emailed, commented, and called me with support after my “Chronic Fatigue” post. I am so grateful! I haven’t had the energy to write anyone back – I’m sorry about that – but hope to do so soon. Your words and support sure did mean a lot to me! Unfortunately I know for a fact that it’s not just the pregnancy or caring for two kids. There are other symptoms that simply don’t fit into those 2 categories. For example, it’s been over 2 years that I have not been able to sleep for more than 4 hours at a time. Even when we haven’t had the kids, and there are not distractions, my brain simply can’t seem to stay asleep. This is one of the indications of chronic fatigue. Other things, like sensitivity to light, muscle weakness and twitching, joint pain, poor circulation, frequent urination, chronic sore throat, dryness of throat, mouth and eyes – all of these are symptoms related to chronic fatigue. Fortunately, the treatment I am on seems to be working! I have had more energy lately, my brain hasn’t been as foggy, and I have been able to sleep a little better. I think it will take a time for me to be back on my feet, but I am hopeful that I am on the right path.

So that’s all for today! I’ll let you guys know how the meeting goes tomorrow!

We went RV camping near San Diego this past weekend. We all desperately needed some R&R and that’s what we got! I forgot that I had the camera so I only took a few pictures right when we were about to leave, and the kids were both asleep in the car. Oh well, at least you get an idea of how beautiful it was! (PS click on each image to enlarge it – they look better!)
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