The Highs of being Makily's Mom.

1. Each time she smiles is like the first time she smiled. We weren't even sure we would ever see her smile. To this day my heart still skips when she smiles.

2. I feel much the same way each time she laughs. She has the cutest, tiniest laugh. She *almost* sounds like a munchkin from the Wizard of Oz. Other times she just chuckles and other people may not even realize she's laughing. I do. Every time though. Her shoulders will go up and down, she'll have a huge grin on her face....and if you listen really closely you will hear her squeak in between chuckles. I find myself wanting to stop time each time she laughs. To bottle it, to carry it in a little box with me forever. To always have that perfect angelic part of her forever.

I just went back and read this paragraph. It occurred to me that maybe some of what I wrote sounded "stalkerish". Maybe like one of those overzealous, hovering mothers. How is it I know each sound, body movement and facial expression that my daughter exhibits when she is happy? How is it that I have somehow memorized these things without even knowing it or without it occurring to me? It is BECAUSE I live each day in fear that my child will leave this earth before me. It is because I never know if when I get up in the morning if Makily will still be with us. In the mornings I go to her room hopeful that all is well when I get into her room. I even have learned to push that so far back in my head that I ALMOST don't think about it and walk quickly into her room to get it over with. Like ripping off a band aid. I'm not sure if quick is better or not. My fear that a seizure will take her in her sleep makes me insane. So insane that she is SEVEN years old and I still have her on an apnea monitor for infants.

I memorized those things about Makily because we have always known that she may leave this world sooner than any of us want her to. Every thing she has accomplished to us has been AMAZING. Everything she does is amazing. SHE is amazing. All that could stop abruptly and all that will be left is all the incredibly changed people that she touched, and all the memories we have made with her.

There are so many more Highs of Being Makily's Mom. I will stop with just those two for now though. Why? Because those two things, make ANY of the low worth EVERY. SECOND.

I love you Makily.

Changes, Updates and More.

Changes:


Makily started having seizures again in February. The first one she had at age two nearly gave me a nervous breakdown. That was FIVE years ago. I had gotten comfortable. She was at school this time and I got a call from her teacher. All she said was "Trish, just come quick.", her voice was panicked. I hung up the phone and ran screaming for my friend Trish to get the Jakob (he was napping) and get in the car. I stupidly got in the drivers seat. Screaming and hysterically crying the whole way there. I remember saying "What if she stopped breathing....What if she is dying....What if we don't get there in time.....". Of course all the way there we were stopped by traffic lights, trains and every slow person in Ocala. When we came upon the train Trish asked me if I wanted her to drive and I got out and let her. Once we got to the school Makily was in the ambulance. She looked out of it. We had a horrible time getting an IV placed. My sister Deborah ended up having to do it although I'm sure that was hell on her to have to do.





The next one she had was AGAIN at school. This one was rougher. It went on for a total of seven minutes. They gave her rectal diastat at the three minute mark. The school nurse ended up having to give her rescue breaths before the Ambulance got there. We already had a neuro appt for the next day so she was monitored for a while at the ER and then sent home.





Neuro added a new medication, Keppra and has kept her on Topomax. Since then she has not had another one. Her EEG's still show frequent abnormal brain spikes though so this obviously is another worry on my mind.





Updates:





Jakob is coming along with his speech. It's slow going but he understands SO MUCH. Just hard for him to get it out. His impulsivity is worse and he is hard headed. He punched a girl in the face at school for no apparent reason. At times he bites, he banged on his bedroom window so much that it broke. We had done everything we could to get him to stop so when it broke we replaced it with plexi-glass so he won't get hurt. He CRAVES sensory stimulation so he is always jumping, running and rolling. All that being said he is a sweet kid. He loves to give hugs and kisses and can't give one without giving the other too. He is outgoing and friendly most times. We have a new chihuahua named Sally. We are desperately trying to get the two of them to be able to co-exit without killing each other. I'm not sure that Jakob understands the dog is NOT a toy so that's something we remind him of OFTEN.





Makily will be going into SECOND grade next year. Jakob will begin his second year of Pre-K. I'm hoping to see tons of growth from him this year as far as his speech and impulse control is concerned. We do have an appointment with a specialist coming up for him.





I went to a conference for families of children with Emanuel Syndrome. It was an awesome trip but tiring. I loved meeting all the kids, they each have a special place in my heart and always will. Makily did well on the trip. I was very proud of her. Everyone adored her and loved on her. There will be another conference next year in November in ORLANDO. I can't wait for that one and I hope I get to help plan it.





More:





As far as I go, I'm hanging in there. The last year has been challanging to say the least. I honestly haven't been the same since Makily had the seizures again in February. It was like a slap in the face of reality that I like to hide from. Since that time I have realized AGAIN that I will never be able to relax when it comes to her. Each day with her is a gift. I never know what to expect. It scares me. Two ES kids ended up being taken out of the hotel at the conference via ambulance for seizures. That sucked. I also have realized that Jakob is still far behind in his expressive language and if he is going to start "normal" Kindergarten when he turns five he really needs to progress this year. It's more and more apparant by his behaviors and speech delay that all the drugs and alcohol did effect his brain development in utero and so I've had to force myself to accept that I have TWO special needs kids and not one. I still have hope that if we just work with Jakob enough and support him enough that he will grow up and be able to live a normal life.





So there's my update. I will try to post more here, in fact I want to. I've been so down for so long now that it can't hurt. Maybe it will help.