A little piece of heaven

I found this article and thought it was very interesting:

Encouraging Exploration

What I have learned about brain development supports this theory, as in the early stages of development children learn through exploration and a good supportive walker gives them this possibility.

Just wanted to share, especially for moms of younger kids – in the article they encourage use of walkers from the age of 1!

After I wrote the post yesterday I had a nice long chat with my mom, followed by a nice long chat with my good friend Laura, followed by a nice hot bath, followed by a deep peaceful sleep. I slept until about 1 pm in the afternoon – I was that exhausted. Denise took Nathan to Medek so I could rest and lo and behold, – everyone was right – things didn’t look so dark any more. The world looks different seen through rested eyes.

I wanted to make a couple of comments about yesterday’s post:

• Nathan HAS improved. I was just too deep in the pits to see it. Just tonight, after dinner, he sat with me on the computer for a little while and I was only holding him by the waist, he held up his head and trunk. He’s definitely doing better with trunk control. Also, during dinner, he reached out and grabbed his zippy cup and was taking it to his mouth. He didn’t get it quite right – but he tried! He did the same with a banana later in the day. I also noticed he is eating MUCH better. I gave him rice and lentils for dinner and didn’t puree it, just to see how he would handle it, and he ate it perfectly, without choking, opening his mouth wide for me and controlling his oral movements wonderfully. Some time ago he wouldn’t bear any weight on his legs – I remember taking him to the Sesame Street Live concert and trying to get him to stand up so he could see over the heads of the people in front of us – and he just wouldn’t hold himself upright for even a second. Today he can stand with balance and sometimes trunk support for a VERY long time. When he is excited, he will pull himself to stand and stay upright for minutes! The improvements ARE definitely there, but, like Mary said in her comment, they’re not as advanced as I want them to be, which is my problem, not his, not Medek’s. I know I know, patience, I promise, I will one day have it! But in general, he HAS progressed and he IS stronger and his brain and body ARE changing and I am grateful for all of it.
• I replied in Spanish to Kenia’s comment, I thought I’d write it in English too. I haven’t for a minute doubted Medek. I know with all of my body, mind, and soul that Medek is THE BEST therapy available for Nathan. I think Medek, combined with ABR for structural improvements, is the “holy grail” in the rehabilitation world. What I sometimes doubt is Nathan’s capacity for change. Since he has 3 different, very severe types of brain damage (holoprosencephaly, the damage from a compressed brain from untreated hydrocephalus, and the damage from an untreated bacterial meningitis), I sometimes wonder if I’m asking too much of him. Maybe his brain has suffered so many insults that it just doesn’t the ability to change itself. I have done everything based on the premise of brain plasticity, knowing that the brain is plastic and can rewire itself – but when I’m depleted and in a dark place I wonder if maybe Nathan’s brain is just too damaged. Then the wonderful Cybell mentioned that this is total BS, for a child with as much damage as Nathan he should be in much worse shape, his brain has adjusted wonderfully to all of the insults and is doing it’s best to improve. This is a child who is missing substantial portions of the brain, who doesn’t have an occipital cortex but can see, who has no corpus callosum, who has no septum pellucidum but can taste and smell, whose basal ganglia is fused but he has voluntary movements in his arms and legs. So by sharing my doubt to the world, kind friends pointed out the obvious and I, once again, feel renewed and reinvigorated. I believe in Medek, I believe in ABR, and I believe in Nathan. Now I just have to get myself well so I don’t forget all of these wonderful things.

I am so grateful for all of you wonderful people who are supporting us. Sarah, thank you for the advice, it really helped – it was the first step towards getting myself back to Center. January, I haven’t forgotten your words, I just needed to vent a little, come back to center and then remember that therapy takes time! Mary, I am grateful for your clear vision, when I read your post, I had to stop and think, and it made me step away from my negativity and see things more clearly. Mom, thank you for the long chat and for helping me calm down! I really appreciate your support! Laura – thanks for letting me vent! I think I just needed to get it all out of my system. You are right about giving Nathan time and about letting him take a little break. I hope to see you in NY soon! Give my Maxx a kiss for me! Karym, gracias por tu amistad y apoyo, te agradezco mucho tus palabras lindas! Cybell, gracias por cuidarnos tanto y por la conversacion de hoy, cuando colgamos ya me senti super tranquila, me abristes mucho los ojos y me siento tan agradecida de tenerte como amiga!!! Kenia, te agradezco mucho tu apoyo y observaciones, como siempre muy sabias! Sonia, thanks for being there! Summer, Kristina, Stacey – your words and support are greatly appreciated! I am glad I am walking this journey with such wonderful individuals!!! THANK YOU EVERYONE for your support.

PS. Trevor’s mom had a similar idea today, she said it so very well.

When we first met Ramon he referred to Nathan as Mr. Mission Impossible…and then he said, “Not for long”.

I have to admit today I am doubting those words. I feel like I am walking through a desert with no end in sight. I feel like it’s windy and dusty and there’s no sign of water and I am walking with all my might but getting nowhere.

I look at Nathan today and I see the same Nathan I saw two years ago. I see the same floppy head, raggedy andy trunk, the same rejection towards therapy. Still his head flops all over when he’s in his wheelchair and we cannot go 1 minute without having to fix him.

Here’s a picture of him at the beginning of the year in the Hart Walker. I see him today and I just don’t see any improvements.

I am sorry. I have tried so hard to stay positive. I have laid in bed all night thinking of all of the things he has going for him, I have sat and watched every single video where he did something remotely well. But then I look at the child in front of me who basically has the same skills that he had as a 6 month old and I wonder – am I undertaking an impossible journey? When do you call it quits? When do you say, it is what it is, and take all that money, time, energy and put it on something that actually HAS an ROI? Like, spending a month on a beach sipping Margaritas (virgin ones of course until the baby comes)?

I am sorry. I know you are thinking I must have multiple personality disorder. Just a week ago I was writing about acceptance and today I write about the opposite. Two days ago I said I was a mother warrior and would never quit, today I am writing that I am nearing the end of strength. Maybe it’s just that 1 month of being sick takes it out of you. I went from that awful gastroenteritis that really wrought havoc in me, then I got a UTI shortly after, I got 2nd degree burns on my feet, now a terrible cold. If I were home I’d know just what to do but here, I’m not in my familiar setting, I don’t have the tools that I would use if I were home. And today to top it off I got some kind of allergy and on top of this awful cold I itch all over and I can’t take benadryl or anything that I know of to stop the itching. How much more can one pregnant mother take?

A few people have written that they see a difference in Nathan. But the truth is, I want to believe you’re right, but I just don’t see it.

I was considering staying here at least until December, possibly until March. But now, today, I have to confess – I am all out of steam. I’ve nothing left to keep me pushing. If I saw Nathan progressing, if I saw him WANTING to progress, I would find energy somehow, somewhere. But for the last 3 weeks, since he’s been sick and recovering, he’s just not into it anymore. He seemed interested in the first 3 weeks and if he continued with that interest, I would’ve done anything, ANYTHING, to extend this opportunity for him. But I don’t see interest, I don’t see progress, and I’m oh so tired.

It’s time to pack up and say – I tried. I really really tried. Now it’s time to go home, lick my wounds, and recover some steam, try again later. But for now, today, I’m collapsed on the desert sand and spent.

I’m sorry if I’ve depressed you. I wanted to be a source of positive energy to others. But more than that, I want to be honest in our journey. And honesty requires sharing the deep dirty droughts too.

PS. I guess it’s in the air, Caliegh’s mom feels similar: October Rain. The sad thing is, I really can’t say Nathan is progressing in any areas, and really hasn’t, so I’m even more depressed now. And now I’m going to try to stop itching, coughing, and blowing my nose and get some sleep. Good night.