Saturday, April 21, 2012

Times are Changing. . . an older update that I forgot to post. LOL

Well, Peter and Tray are wrapping up the finally days of his initial transplant stay in NYC.  They had a blast at the Museum of Natural History yesterday.  Today, maybe ChinaTown.  Maybe.  Tray is trying to soak up all the play time with his buddies he can.  Once he returns home, he'll be lonely and he knows it.  Can't go to school.  Can't participate in most camps (until the heart camp at the end of summer) and his friends will all be busy with one or the other.  He's happy, healthy and full of energy, with no where to expend it.  He's going to need to learn how to live life without the confines of medical restrictions other than not being in crowds. Times are changing for Tray.

Peter and I drove past a school and they had posted Kindergarten Registration days and times. . . for the first time in 17 years, we don't have anyone waiting to go to kindergarten.  We were both saddened by that.  A big change that had snuck up on us when we weren't looking.

Nettie is ready, or so she thinks, to move out.  How different life will be with her not in the house.  She has been with us for 18 years.  18 years of watching, helping, teaching, letting her fall, and scooping her back up.  She defied the doctors, she defied us, she defied all practical modern medical wisdom.  She is alive and well, and despite our reservations about her preparedness, she is looking to move out into the big world.  Times are changing for Nettie.

Joshua continues to seize.  He has been doing it for so long now, it doesn't faze him.  It does us.  We've tried all we know and have researched so many options and nothing has been successful.  He continues to seize.  Yet, he laughs every day, talks about what he wants to do when "he grows up" and who he'll be like.  It both heals and hurts to hear him talk about the future.  I don't know what it holds for him, but he will continue to get older, thus the day he needs to move out will also come.  Next year he will be in the main high school building in 10th grade.  Yes, he should be a senior.  But, he is oblivious to this fact and that's just fine with us!  He will be with new kids, new teacher's, new 1:1 aides.  We will be making major medication changes in the near future.  We pray they are for the good and not bad.  We will revisit the possibility of another major brain surgery.  Only time will tell.  Times are changing for Joshua and here's hoping it's all for the good.

Marriela is the antithesis of change.  She despises it, and balks loudly when it occurs.  She likes her routine and even that is not routine enough sometimes.  She is going to 5th grade next year.  She has been given nothing but the most dedicated of staff at her school to get her through the 4th grade, without having to move to a different program, thus another school.  Next year will be her last year at this school.  The last year she'll be able to walk the halls to do her learning, the last year she'll be able to be escorted, lovingly, down the hallway by 3 teachers to the special "area" where she falls asleep under a weighted blanket in a bean bag.  The last year, she'll go to the playground and play tag with typical peers.  I worry the very most about Marriela.  This school sees her for who she is and can be, not what she says and does.  She apologizes sincerely, but can't stop herself from lashing out when frustrated.  She truly believes all that children say, for good and bad.  Resulting in many sad moments as she misinterprets a comment as something mean and many angry moments when she feels slighted by someone, who has no idea they have done anything at all.  When we say good by to her teachers this year, I feel that things will never be the same or as good for Marriela again.  It just isn't possible to hope for that much to continue.  Times are changing for Marriela and she's not going to like it!

Cody is going to second grade.  My goodness, second grade.  He is going to be fine.  Cody doesn't see change as a problem and deals with it by just rolling with the punches.  He is a friend to all in his class.  He is a good brother to all in our family (though he and Marriela are doing a lot of head butting lately!).  He is a lovable and happy child whom is loved by all of his teachers.  He makes us immensely proud.  Change is coming for Cody, but he could care less.

Sergio. . . where to start.  Sergio has made many changes recently and more are to come.  This month, we'll be restarting some feeds in his tummy.  He hasn't had any food in his stomach in over 2 years.  In 2 weeks, Sergio will be 6 years old.  SIX years old!!  To see him, you'd know why this is so hard to believe.  To know what he's been through, you'd know why this is so hard to believe.  Most certainly a milestone, many did NOT think he would make and I'm beyond thrilled that even I have been proven wrong. He scared me more times than I can count . . . and I can count pretty high, just ask Cody.  Sergio is in a beautiful state of routine right now and we'll be rocking that boat with the feeds.  But, he's managed all that has been thrown at him and more, so I have great hopes this will be same with the change.  Next year, he's repeating kindergarten.  He will not care, nor even notice.  Change is coming for Sergio, here's praying he handles it well. 

Peter and I will be looking at what is next for us, our family and the major transition back into the work force.  It's hard to commit to a job when you have a child on a heart transplant list, another undergoing major brain surgery, another one living in and out of hospitals for more than a year and another who can not go to any sort of childcare facility.  So, with much of that behind us, Peter and I are exploring our options.  Maybe returning to school for me.  Peter may continue to his work from home, with a much more aggressive course of action, or maybe he'll revisit moving to a company.  So many things to consider, so much change.  Not a great fan of change.  I really have a hard time, though do fine once the change has occurred.  I am actually far more stressed "talking" about it, than the actual act of change.  Does that make sense??  But, in the end, we all have to roll with the changes and we're finally in a place to face them head on. 


  1. I admit, I laughed when I read that YOU think you're not a fan of change, when every minute of your life is in flux with something happening that you could not plan for, cannot control or necessarily fix. Renee, I would guess you're not a fan of routine more than matter what you say. Love and joy to you all -- change or routine -- into a future that is better than you imagine.

    1. Mel, I guess I never thought of it from that perspective! LOL I don't like change, really. But, have a knack of rolling with it, since I can't seem to stop it. I remember thinking, why does Tray need a transplant, he's happy, going to school and other than being hooked to oxygen and an IV all day, he seems fine. LOL I wasn't ready for the changes that would be coming. Now, they're over and all is well again. :-) Getting back into our routine. Feels good. hehehe Love and joy to you as well.