Once again, we are kinda back to where we were before last Saturday. I still find myself on pins and needles ( Especially when he wakes up from naps) because I'm so afraid hes going to have another one of those seizure episodes that sent emergency vehicles screaming to our house. It gets a little better with every day that passes but I don't think there will come a day that I wont think about that day. I guess in a way its kinda scarred me.
BUT......
Things have returned to a more normal pace and predictable seizure patterns. ( Although, Friday he had none.) Mood seems to be stabilizing a bit but we are still having some issues with hitting, biting, and hair pulling. We are using some " Behavior modification techniques" because weather or not its seizure or med related or whatever, he needs to know that kind of behavior is just not acceptable. Besides that, the kid is getting REALLY strong now and Madison, although fast, is pretty fragile.
I guess I need to quit harping on the mood thing so much because it kinda paints an inaccurate picture of Dawson. See, the other side of Dawson is an amazing one. He is a very tender hearted and sweet kid the other 95% of the time and we need to spend more time talking about that Dawson.
He is incredibly funny, social, and despite being plagued by numerous seizures each day he continues to thrive. The seizures started at 2 months old and they have yet to slow him down one bit. He talks, plays, runs, colors, loves to be read to, kicks and throws balls. He understands and follows directions when given simple tasks to do........
The thing is, statistically speaking, he is not supposed to be doing any of this stuff because Infantile Spasms is a Catastrophic form of epilepsy.. BUUUUT nobody has told Dawson this yet because he continues on everyday life as though nothing is wrong. And the fact is, If you were to watch Dawson for yourself, you would Never know anything was wrong with him at all.
It is a fact that Dawson has been touched by Jehovah Rapha ( The God who heals you) because to date, and despite the fact he has suffered thousands of seizures, he is as normal as any just turned two year old you would ever meet. And THAT is a miracle!!! and THAT is what we need be focusing more on.
I was going back and reading some of the last few posts and it kinda hit me that I'm not really giving Dawson a fair shake here. The things we deal with are real and concerning, BUT those things are not what makes Dawson Dawson. They are side effects of a small brain filled with many different kinds of seizure meds. The real Dawson is the big blue eyed kid standing at the refrigerator door knocking on it and saying " knock knock cheese" because he wants a cheese stick and then gives a big grin says " Thank you" afterwards..
Its so easy for me to get sucked into all the horrible and negative things that accompany a two year old riddled with seizures but its time I stopped for a moment and recognized, and shared with you, how truly BLESSED this family has been.
Thanks be to God for he is Great and Mighty!!
B.T.W Melatonin is awesome. A little shot and Dawson is out like a light.. Goodnight little buddy We love you
Jeff
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6 comments:
Loved this post Jeff--you are truly truly blessed!!! It was everything I could do to hold it together this past weekend watching what Dawson and you guys were going through with the hospital visit and those scary seizures. But what has been forever etched in my mind even more is when he was first diagnosed and us asking EVERYBODY that we came in contact with to PRAY because he had (wasn't it?) 'a 90-95% chance of moderate to severe developmental disability'. I can't help but think about that every time I see him. He IS a walking miracle and that kind of testimony gives people hope! When I get the stats for everything I've been diagnosed with, I can get upset or I can think 'Dawson only had a 5-10% chance too'! The seizure monster, or whatever kind of monster anyone deals with, only "wins" if it can take your joy and your faith from you--and we pray every day for you to be strengthened in those areas (along with seizure-freedom, of course)!! Love you guys:)
(And I'm glad the melatonin is working for ya:))
Wow, I didn't realize how high functioning he is for having started seizing at 2 months and still having them! He is truly amazing and you/he will give hope to those who are new to all of this and come across your blog. The world of I.S. needs hope, as the statistics are so grim... which is a huge reminder that our kids are not statistics, they are all unique in their own...I have learned to HATE statistics....I would much rather rely on God...He knows our kids perfectly!
Glad he is doing better. And it's so wonderful that he is still developing normally!! God is awesome!
Rudy
Beautiful post! it is very easy to get wrapped up in the negatives of what they are going through or what they are doing, but I have personally tried to make an effort to start focusing on the positives of what Connor can do. He never asked for any of this so why should I look at him like he failed me or he is a disappointment? I love my kid more than life itself. Yes, I hate seizures too more than life itself, but this seizure monster has robbed us of so much, and I refuse to give it life any more. connor isn't as advanced as Dawson, but he is doing some awesome stuff in his own time and THAT is what I need to focus on & not compare him to others. I think when one has a positive mental outlook on their situation, it doesn't necessarily change the situation, but it gives the emotional outlook a boost. that, is why I started focusing more on the positives on Connor's blog. I was getting so down thinking about all of things that were sad or not going right that I lost sight of what an awesome little boy I have. Dawson rocks & so do his parents!!
Dawson's life is truly a miracle but God is not surprised. As much as the medical literature tells us one thing our God can do quite another, which is so evidenced in your little boy's life.
Thank you for sharing him with us!
The spirit with which you all travel this road is nothing short of amazing.Love to you all and prayers as always flowing.
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