1st Father’s Day Without Him

This weekend will mark the first Father’s Day since my Dad passed. I honestly wish that I could go without it, what does that say about me? I could easily redeem myself by stating that he would totally understand, but the underlying fact that I wish to be selfish in the first place is still there. When he passed, there were a lot of comments thrown around about my brother and I being adopted, so that somehow implied that we were effected less by his passing, or that he wasn’t as much of a father to us because he wasn’t blood? He was more a father to me than any man I had ever known. It was really quite ridiculous. It is funny to hear of stories about how uptight he use to be about people. My mother always said that he changed the way he looked at people quite a bit in the years they were married. We tend to have that effect on people, my mother and I.

He saw it all clearly before he passed, it was like talking to a completely new man. He understood the effect of negativity, he was ready to try anything to keep himself healthy, anything to get my mom back…  I know that I have said it before, but I will probably repeat it time and again, we were so very blessed to have those hours upon hours to talk before he went into surgery. I know in my heart that there is nothing that could replace that. I had that… his adopted, loved, caring step-daughter. We had that…

Can I tell you how it broke my heart that my son picked up his book of photos and before turning to the correct page, he started saying, “Papa, Papa?” It is the small times such as then that tend to catch me off guard and leave me a bawling mess. Think I might take the Lemur King to his Dad’s in Toledo and head over to Molly’s, my Dad’s favorite little diner to eat? His girls would get a kick out of that. Then maybe take a newspaper over to Charlie, Dad’s best friend. He’s in a home right now and he can’t stand it there. Wish I were able to take him out on my own, but I would be too afraid of him losing his footing and falling. We will have to see how it works out. So much to be done. I know that whatever it is that I end up doing,  Dad will be right there laughing his behind off. Such a comforting feeling.

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I’ve Got My Blanket…

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This boy can sleep an incredible amount. This surprises me because he always feels the need to have this blanket with him. I love it, but it is LOUD. When he was born, we knew that there was a 50/50 chance that he would have the same genetic condition, Blue Cone Monochromacy, that his older brother had, so when it was confirmed we took it as just another important piece of the puzzle of “him”.  With BCM, his central visual acuity is roughly 20/80-20/200 at any given moment and he is colorblind. We have found that his colorblindness is not complete and that he can see slight amounts of yellow and red, though we don’t know in what amounts. My mother is brilliant when it comes to sewing and put together this baby blanket for him. It is black, white and yellow, with geometric patterns, dots, penguins, etc and very busy. She made this blanket and a mobile for over his crib, how awesome is that?! It amazes me everyday the challenges we face and the things we learn. I constantly say that we are blessed that he was given this condition… it forces us to change and adapt accordingly. How he possibly adapts to sleeping with that beautiful, yet loud, blanket is beyond me…

Update on the IEP

Had another IEP for the Lemur King this morning… they were impressed how current he is with his skills despite his visual impairment. They were also impressed with his vocabulary, use of Sign and putting a few words together. They said I was doing a good job! I SO needed to hear that… Once a week Group and once a month with the Specialist! Woo hoo!!!

The Colors on the Track…

Day 39 of my 365 Days of Dreads. Almost done for the night… it’s been a very long night. About to crash. One more coat to the nails and I am done! Need to be up early and see if school is closed for the day with this snow that is coming down! Went to Spyder’s Cub Scouts meeting at Lightning Speedway in Livonia tonight. I got frustrated for Spyder, being put into another situation where color is of the importance. It was totally awesome! Slot car racing!!! The only issue was that they were color coded tracks and cars. For those boys not racing, they were “in charge” of standing on the outside of the track, catching the cars when they flipped and putting them back on their appropriate lane. The “dude”, yes, he was just that, some old dude, almost caught my foot “accidentally” up his… Oh, I mean, there was this surly gentleman working there that kept spouting unkind remarks at my son, who stood jumping with excitement at the end of the track, yet with his hands in his pockets the whole time. “You aren’t going to catch any of them with your hands in your pockets,” he would bark at my frustrated son. I tried to do my best at standing by Spyder’s side to direct him to the correct lane and such. I have to remember that people can’t see what makes things so darn difficult for him…

I was the only female there, other than the younger sister of one of the Scouts. It was kind of cool for one of the dads to hold the Lemur King so I could race a couple laps. The Lemur King was not having it. He was ready to go home and go to bed. I have to say… that is exactly where I am at.

Take a Seat

I find it entertaining that the Lemur King is now pushing to take over his big brother’s chair…. We have learned that the boys need to be fairly close to the television in order for them to see it, with eyesight ranging from 20/50 to approximately 20/80. Finding the appropriate seating element has been quite the task to say the least. The television has to be low in order for them to see it, but then when they sit down, no one can see around their heads. Over the years I have tried those little foam couches, outdoor chairs, child sized rockers, etc. It seems that each of them has their downfall just as everything else. For the past year we have resorted to, “Spyder, can you move to the side please?”

Now there are two heads to see beyond! I am grateful that they can still see at all, please don’t get me wrong, it’s just that these little obstacles can seem like such a big deal sometimes. My body and heart use to be able to take these hurdles with much more grace. Now I just want to stomp my feet and pout. For now I will try to handle with as much grace as I can muster and let LK keep pushing his way into his brother’s seat. Let’s label it a “bonding experience”…