Moving Day and other events

It's that dreadful time of year when Sam thinks he needs to spread his wings and flee the nest, and that he did!  He and his cousin were able to sell their contracts from one housing place to rent at the  newest complex in town.  It's a two story unit and he is in Heaven!  The managers are really excited for them to be there too.  One of the managers lives right across the street from me which is kind of cool.  They are paying much less than the one they had and it's way nicer.  As you can see, the apartment is extremely bright!  A large sliding glass door to let the morning sun in, a small balcony and then the brightest lights you've seen throughout the apartment.   They are well designed and I'm happy for him.  





 Sam's pretty apprehensive about starting school again.  We have all sorts of support in place through the disability office, which has been amazing, but he is very much overwhelmed with it all.  I hope once he gets through his first week, he will feel better about things.   From a health standpoint, I'm a little nervous.  It seems as soon as he gets on campus, he picks up a million viruses and gets sick immediately.  Here's hoping that is not the case.

This was a strange thing that happened to me...a dear, dear friend from a very long time ago, about 30 years ago, found me!   It came from out of the blue.  He was on Facebook and for some odd reason, the video from the Secret Santa was on his feed so he looked at it and was shocked to see that it was me!  He added me as a friend on FB and we've been communicating over email mostly until this weekend when I was able to call him.  We talked for nearly 3 hours!  It felt nothing like 30 years has passed us by.  He only has 5 FB friends, none of them common to any of my friends so it's almost like he was meant to find that video. 

We had such a close friendship when I was 17,18 and 19.  In fact, I took him to my high school graduation, even though he was quite a bit older than me.  When I was 19, he moved away and I moved to the States.  In a letter he left for me the night he moved, he said if we were meant to be together, our paths would cross again some day.  I really didn't believe that would be possible.  I still can't believe it happened. 

He was only married for a couple of years a long time ago.  He is alone now and was recently diagnosed with a brain tumor and Multiple Sclerosis.  Because of the tumor, he is losing his vision. He can no longer walk but a few steps.  He had to sell his home and move to an apartment.  When he told me that, I was so sad for him.  If I was in a different situation myself, I would move back in a heart beat and take care of him.  It is heartbreaking that he is facing these challenges alone.  We did share a very special friendship.  Even though there is a great distance between us, I know we will remain close from here on out.  It felt good to share all those old memories together this past weekend.  The best Friday night I've had in forever.

Saturday, I spent most of the day making a birthday cake for my nephew's wife.  They have only been married a year so I don't know her well, but she is a sweetheart and we love spending time with her.  I have to say, this is my favorite cake so far.  The flowers are edible!  I made them petal by petal out of a wafer/rice paper.  I hand painted them and then put it all together.  The cake is chocolate with a chocolate ganache between all three layers.  There is a chocolate lattice that encircles the cake.






 I'm grateful for these distractions this weekend even though I should have been working.  Friday, freaked me out quite a bit.  A mother posted on the Dyskeratosis Congenita page about her son who needs a bone marrow transplant and a liver transplant.  She was wondering which one they should do first.  What a horrible decision to face.  As the conversation unfolded, clearly, the number of young men and women in their late teens and 20's with DC are facing liver transplants.  I felt a sinking feeling that we will soon be joining the ranks.  With Sam, his liver  numbers wax and wane...for now, they become elevated for a couple of months but settle back down for a few more months.  His elevated numbers are just slightly above the upper normal limits.  Spencer's numbers are triple!

The fact that his pancreas is suffering, his GI system, his liver, makes me feel like we need to brace for the worst but hope for the best.  Many of these families are traveling to Boston for transplant.  I know we won't have that option unless we can raise the funds and fight our insurance company to let us go out of network...if they will even cover transplant in the first place.  It makes me sick to think about it but I can't think about anything else!  It's got me all up in knots.  The logistics of transplant would be a  nightmare. 

I've had to drive Shelbie everywhere the past month and she is not improving at all like I had hoped she would.  I have missed so much work in order to make that happen so if I have to be gone for an extended period of time, I don't know what we'll do. 

I know...it's too soon to worry yet but it seems to be my strength in life...putting the cart before the horse, counting my chickens...and all that good stuff.  I will continue to fight these feelings but it is hard and taking a toll on my mind. Spencer is not getting any better. 

Here we are, back on the hamster wheel of life, ready for another white knuckle week of who knows what.

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