A Little Divorce With That Dialysis?

Please excuse the huge gap in posts.  We have had a LOT going on.  Sonshine's dad decided a girlfriend was just what he needed to get him through the next 25 years.  Mazel Tov.  It's always a classy move to cheat on your family for 13 months before you accidentally get caught and have to come clean.

Everybody went into a tail spin.  It was a lot to get adjusted to.  Sonshine and his sister really got knocked for a loop.  One of their counselors explained it to them like this, "Everything that you have known to be solid and unshakeable in your life, just imploded."  Yep.  That about covers it.  As a parent you think that if you get them through the toddler years and the young years that you might be home free when it comes to divorce fallout.  They took it so hard.  If I hate him for anything, it's for that.  Two years have passed and they still are having to get their minds around the fact that their father has put himself and someone else above concerns about their educationand their mental and physical health.  I watch my 21 year old daughter struggle with OCD and anxiety while she tries to put herself through college.

Sonshine can't even apply to schools because he can't get the application fees from his dad.  We all just keep swimming.  I was clearing 500.00 a month when the ex left.  Now it's 1400.00.  Progress.  Still not enough but we'll get there.  It is painful to watch them both come to understand what their father's emotional and financial limitations are toward them.  As children, we all come to that understanding.  Theirs came sooner than I thought it would but they are great people with a nice reserve of positivity.  They are going to be fine. 

Sonshine's sister has a job now that she loves.  Sonshine has started a business with the son of a very nice man that I have been seeing.  It's not the family that we were used to, but it feels good.  The bf taught Sonshine and his sister how to change the oil in their cars.  He just taught sis how to replace her brakes.  She feels empowered and capable.  I am reminded so many times now of God's grace.  His simple ways of blessing us and keeping us connected to what is really important.  Lord, I know I don't say it enough, but thank you.

Today I Need To Know I'm Not Alone

My son is back from Disneyland where he visited for a few days with his sister, father, and 2 family friends. Every time he comes back from being away for even a day, I'm always struck by how much older he seems to me. While he was gone he managed to take his morning and afternoon medication without me reminding him and to self-catheterize every three hours without his bladder exploding.
Tomorrow we take in the weekly urine sample to be evaluated for infection and the day after that we have the big appointment with the pediatric nephrologist. Last month we were told that his numbers indicating kidney health and renal function, specifically the BUN and Creatinin were much higher than they should be and that they indicated a renal function of about 30%. We have been working so hard to keep him on a three hour cathing schedule hoping that it would take pressure off his kidneys and that the numbers would return to a more normal range. We are also working on taking weight off and hoping that it will relieve some of the load on the kidneys as well. It is always such a struggle for children that are in a wheelchair. Weight is an issue for everyone these days but especially when your physical activity is limited. Now that he is 15, it is not as easy to simply take him to the physical therapist, he has to want to go or he just simply refuses to participate once he is there. Working out at the gym is something that he enjoys doing with his dad. Hopefully, we can get him on the bus for doing a little more of that.

I'm starting this blog because I would like to know that there are other moms of spina bifida teens out there going through some of the same challenges that I am. Ideally, it would be great to be a support group of sorts to one another. I guess today I just need to know that I'm not alone.