Here lately it seems I’m behind on everything and blogging gets pushed to the last of my priorities. Yet, my ideas for blogs never leave my mind and throughout the day I have a thousand different things I want to put to paper.
Life with Pookie has been increasingly chaotic lately. It seems each day we discover something that he can no longer tolerate, something he no longer can say, or something he no longer understands. It’s near impossible to figure out where to go from here. The majority of our daily interactions seem to be us trying to figure out what it is he needs. More and more each day we can’t understand his speech. In addition, he takes everything that is said very literal. Then, there is the fact that he can no longer understand certain concepts he previously grasped. I feel like I spend more time trying to figure out what he’s saying and how to say what I need him to hear, then anything else.
His visit with his pediatric neurologist recently went well. Although I didn’t really get any answers, we did get scheduled for more intensive testing. The first step is an EEG with sedation scheduled for the 9th of this month. Although the neurologist would have preferred to do a sleep deprived EEG, with Pookie's sleep disorder we weren't sure that he'd be able to fall asleep for the EEG itself. So, he'll be sedated instead. While he’s sedated, they will draw blood and test for various factors as well. The EEG will determine if he’s having seizure activity that is resulting in the various losses he’s experiencing. The other tests will look for various things such as vitamin deficiencies and whether other parts of his body are working properly. We’re also scheduled to take him to see a pediatric neuropsychiatrist. She will do intensive testing and develop very specific treatments to aide him. Of course, she’s one of the few in her field in this state and our appointment couldn’t be scheduled until April. We waited 6 months to get in to see the neurologist and now have to wait another 6 to see the pediatric neuropsychiatrist. Life isn’t bad though. I’m blessed to have such a loving child. He’s full of energy and fun. We’re blessed to have such wonderful support from various resources. Our church family is fabulous in understanding and being non-judgmental. There are some wonderful child care workers that care for Pook when we attend church which is a wonderful break for us and a very important social activity for him. Not to mention it’s much easier to grasp a message when you don’t have a squirming, rocking 4 year old on your lap.
Our older two children attend Sibshops. Our local Sibshops recently received a grant from Speedway Children’s Charities. As a result, those who attend Sibshops and their family were invited to the awards ceremony which took place opening night at Carolina Christmas. Speedway Children’s Charities donated to more then 75 local charities that night. 
All the families associated with those various charities were allowed to participate in the various activities for free! Our night was unbelievable! Pookie wasn’t real happy to be around so many people he didn’t know at first and spent the first hour clinging to me. The fireworks was not something he wanted and he firmly expressed his desire to go home. I held out though and with his siblings help was able to eventually convince him to go look at the many Christmas trees that were on display. That led to his going to the elves workshop where Lowe’s had generously donated
various building activities for the children. Armed with nails and a hammer, he and his father built a wooden garage for him to house his blue Hotwheels in!
Pook’s older sister appeared and showed him a picture of her and Santa. Completely bewildered and confused, he followed us to see Santa. His concept of pretend and real almost short circuited him then and there on the spot. But, Santa was holding up this Lugnut stuffy
that had blue and white (his favorite colors) on it and a candy cane to boot. He dragged me up with him, told Santa he wanted a bike that says “vroom vroom” and made it absolutely clear that there was no way Santa was going to touch him AT ALL. His picture shows him standing a foot away with Mom by his side! Next we headed outside. There were tons of kiddie rides. His Dad and I took turns wandering through the rides with him. We should have known that Pook’s insistence on everything being completed fully and all things being where they go meant that he would have to ride every single ride there, but that didn’t really click with us until we were so exhausted our legs could barely move. Pook didn’t seem to have a favorite until we only had 3 rides left to go. He then entered this large inflatable obstacle course that had a huge slide at the end of it. He discovered that if he went out the back of it, he could run around, slip in behind the man attending the ride, and go back through it over and over again……….all while his parents frantically tried to find him in the huge inflatable. It took a lot of convincing to get him to move on. Once we reminded him that there were rides he had not ridden yet, he moved on.
After the rides and the petting zoo, we went to find our older two children who were at the ice skating rink with friends. The rink required at least one parent to skate with all children under a certain age so I sat down and laced up some skates. I was worried about how I’d manage with my own health issues if any of the children got hurt. I was especially worried about Pook. Yet, the Evel Knievel in him saved the day. Pook got on the ice, smiled real big and said, “Hey, watch this” despite my repeating, “Wait on Mommy!” Pook took off across the ice like he’d spent his entire life on it! Who’d have thought? After we skated for a while (with me holding on to the wall most of the time), Pook wanted to race. Three quarters of the way across the rink he looks back over his shoulder, saw me close to him, kicked up on the front of his skates and RAN across the ice!! I spent the rest of the night assuring everyone that it really was his first time on the ice despite their thinking he’d been skating for years. We finished off the day getting a horse drawn carriage ride (a blue and white carriage…Pook’s favorite colors) around the racetrack to see the lights. Although we weren’t overly impressed with the lights, we were extremely impressed with getting to ride a horse drawn carriage around the Charlotte Motor Speedway racetrack! I never realized the incline those race cars sped across!
Pook had such a wonderful time. Granted, he was out of sorts for a few days after but now anytime he sees something that reminds him of Carolina Christmas, he asks to go ice skating. Pook longs to be a fireman and loves to ice skate. Yep, that’s an odd combination but one that makes him uniquely Pookie!!
I can’t imagine what our lives would be without all the support, love, and fun that Sibshops has brought into our lives. If your child has a sibling with special needs, you MUST get them into your local Sibshops program. I can’t stress how important it is for your children to have their own support group for living with a sib with special needs. It has totally changed, not only our children, but our entire family’s perspective.
Pookie has brought so much into our lives. We are better people then we were before he came. Pook has taught us a compassion that I don’t think any of us truly had before. I can only relate it to the compassion that moved Jesus when he saw the crowds of hurting people. I look forward to all the things that Pook will continue to teach us and thank God for the blessing He has brought into our lives!
