A little piece of heaven

I was reading Kara’s blog today and her post really got me thinking. It’s about a father who killed his 12 year old daughter with severe CP:

A Canadian man was released today on parole after serving ten years of a life sentence for killing his twelve year old daughter by asphyxiation because she had severe cerebral palsy. The jury had deemed the killing a mercy killing and the man felt no remorse for causing the end of his daughter’s suffering through death.

It made me so sad and upset. And made me remember a lesson I had very early into our journey with Nathan.

When he was just 2 months old, I was really struggling to accept his prognosis, diagnosis, and quality of life. He would cry all the time from the hydrocephalus and I was barely hanging in. I took him to a meditation retreat where the focus was on healing. Part of me was hoping for a miracle. As usual, a miracle happened, but not the way I expected.

Nathan didn’t miraculously get better or stop crying. But right when we got home is when he was diagnosed with hydrocephalus and when he had his shunt surgery.

The real miracle was my conversation with one of my teachers. I was telling him about Nathan, and he said to me, Marcela, the most important thing to remember is that, above and beyond everything else, your son is a person with feelings.

A person with feelings. It sound so simple. But it is so profound.

That girl with CP who was murdered by her dad. She was a person with feelings. She could feel the dad’s anguish and intention. I am a big believer that people have the ability to perceive the feelings of others. Even the most disabled person can feel when they are loved, and when they are hated. In fact I think disabled children have even more developed perceptions as these are areas of the brain that are free to develop so the brain can take on extra cortex for the processing of emotions.

My Stroke of Insight was a book that really helped me to understand this. When the brain doesn’t function normally, it can really affect how you process feelings and view the world. So it is clear to me that kids with CP have a different way of perceiving emotions because they are so often the sweetest, most loving human beings. Truly special.

Seeing Nathan as a person with feelings first and foremost really helped me to change my view of him and our relationship. But I am preaching to the choir. I think we have all learned this lesson. Now if we could help the rest of the world understand this.

You are all really cool people and I could really use some advice on a number of things:

So I am really struggling with Belle. She wakes up every 2 hours at night. During the day, unless she is being held, she will only sleep for 20 minutes. She doesn’t like playing by herself and someone has to be there with her for her to relax and play. She doesn’t like being changed or diapered or buckled into her car seat and screams bloody murder every time we try to do any of these things. I know I should’ve figured this out by now but in a way I am a first-time mom as we are facing so many things with Belle that we never faced with Nathan! Would LOVE any help/feedback/advice you could offer a newbie mommy! I am at my wits end and don’t even know where to go for help!

Nathan is really struggling with his new AFO’s. They make him tighten up and he has a hard time bending his knees. He can walk in the Pony by using a motion of the feet, but with the AFO’s, he actually has to improve his gait pattern and he cant’ seem to figure it out. He tries so hard! Today he was able to move his right leg forward, but the left leg doesn’t move at all. Any ideas? I feel so bad for him, gaining mobility and then losing it and having to work so hard to regain it 🙁

And since I seem to be on the topic of struggling, I am struggling to find a routine/rhythm to my life. Every single day seems to be different from the next. And every day seems to be SO BUSY that I find myself pulled away often from the kids to take care of stuff. Both Belle and I need a routine so we don’t feel like every single day is an unknown with a bag of surprises. How do you manage to keep a routine given that every day seems to have a lot of things to do/appointments/novelties?

I am also trying to find the right balance for Nathan between stability, sustainability, and intensives. I want to do a 2 week medek intensive in New York, another 40 HBOT dives, and another feldenkrais intensive. But for each one of these intensives we would take Nathan away from his daily routine, daily therapies, and continuity at school. But at the same time I think these intensives would also have benefit. Oh what to do what to do, when and how often? How do you balance sustainability with bursts of intensive therapy?

And how do you give you typical child balance and stability when your non-typical child’s life requires SO MUCH WORK?

And does anyone know anything about photography that they can donate a few phone minutes of your time? I am trying to understand what aperture, shutter speed, exposure, ISO are, and the interplay between them. Would love some help, sometimes what someone can explain in 10 minutes can take one 10 hours to figure out on their own. Thanks!

HEEEEEEEEEEEEEELLLLLLLLLLLLLLLLLLLLPPPPPPPPPPPPPPPPPPP!

Nathan’s immune system isn’t working too well right now, which keeps us on high alert. So today I thought I’d write about some of the things I use when Nathan is sick or starting to get sick.

Our worst enemy is boogers. Since Nathan can’t blow his nose or cough them out, the boogers stay in his system and perpetuate the infection, eventually causing more problems including bronchitis, ear, and sinus infections. So every time he gets sick, my #1 goal is to get rid of those boogers. I’ve tried a lot of things and by now I have what I believe is the very best booger removal system out there:

This isn’t alternative medicine. It was given to us by Nathan’s pediatrician. We get ours from CVS. They sell it at walmart, walgreens, CVS – pretty much any pharmacy. And it is AMAZING for getting rid of all of the mucus stuck at the top of the nasal passageways all the way to the very back and to the throat.

Here’s how you do it. Add one packet of the salt solution that it comes with. Make sure the water is pretty warm – not hot enough to burn the inside of your hand, but pretty warm. Then hold the child’s head slightly leaning forward and to one side (depending on what side you’re cleaning). Squirt really hard until you see the liquid coming out of the other nostril. And enjoy as you watch the flow of boogers!

Yes, it’s pretty uncomfortable. Yes, it’s pretty hard to do on kids that have head control. Yes, they hate it. But it is SOOO helpful. We even used it with Belle when she was really sick and it helped her tremendously. In fact a day after we started using it she was pretty much back to normal. But I will say, it took one adult holding her head with all of their strength to keep her still enough to do it, and it made her hysterical, but, it was worth it to get her healthy again.

Next on my toolkit is Tea Tree Therapy:

You can get it at Whole Foods or order it online. It is AMAZING to relieve congestion. I rub it on Nathan’s chest and upper back, on his throat, even a little bit on his sinus and just under his nose. It burns a little bit but, once again, the burn is worth it as it helps him tremendously.

And here’s a bonus about this oil. One day my hand was hurting very badly and all I had handy was the oil, so I put some on the area where it hurt. Lo and behold, the pain went away! I use it often on areas of inflammation and it seems to work wonder. My next experiment will be to massage Nathan’s arms and legs with it to see if it helps with his spasticity. I will let you know how it goes!

Finally, I use some homeopathic remedies if I feel he still needs a boost. I get them all at Whole Foods. My favorite right now is:

It’s called Alpha CF, and they have an adult and a baby version. I give it to Nathan every 30 minutes if he is on the verge of getting sick or running fevers, then every hour when he gets better, then every few hours as he improves. It works wonders.

I also give him as much Emergen-C as we can get into him. Again, Emergen-C can be found anywhere and it is a wonderful way of helping to strengthen his immune system to avoid illness. Once he is sick then it helps speed up recovery but doesn’t help to manage symptoms.

Right now this is my golden combination and is really helping us to keep Nathan’s illnesses from escalating. Unfortunately none of this are improving his immune system, they just prevent him from getting worse. I just though I’d share as we head into flu and cold season.