About Me

I am a single mom of three amazing boys!  All three of my sons entered my family through adoption.  All three of my boys have developmental disabilities. My oldest son, Matthew has been diagnosed with Fetal Alcohol Syndrome and Bipolar Disorder. David, my middle son, has a genetic condition, he has a duplication on his 15th chromosome which leads to autism like symptoms, seizures and learning challenges. My youngest son, Jacob has learning disabilities. Each of my children bring unique challengs to our family and also bring their own personality and joys to our everyday life!

Tuesday, March 29, 2011

what a day

I am in need of a battery recharge and i am thankful that I am going away overnight in 2 weeks, I only hope that I make it until that wonderful night away. I think what I could really use is to go away one morning and come back after a full night of sleep and a full day of sleep.....maybe then I would feel completely and totally rested. Then again, are any parents truly well rested? I just feel like right now my anxiety is sky high......

David is doing the nighttime cough that means he is having seizures. He is awake a lot during the night and just doesn't "look right". His teacher has noticed a change in him, I am noticing that he is having trouble getting some words out....certainly, most people would notice nothing right now, but I know my little boy intimately, and I know when he is just not 100%. So while he is ok, he is just not completely well, and so I am worried as any good mom would be.....so in my worry about David I am functioning at not quite 100%.

Add to that worry about David, that I am thinking nonstop about what to do with Jacob next year. Should he go to kindergarten? Will he be better off to wait? Will he receive speech services if he doesn't go to kindergarten? Will he struggle and be frustrated if I send him to kindergarten and he isn't quite ready? I feel like he could use another year to mature. Unfortunately, he may not get the speech services he really needs if he stays in preschool another year, so it is hard to know what to do to make a good decision for jacob.

On top of all of this Matthew is still wetting the bed, and I am exhausted. It is constant....every single night. He wets through 2 sheets, 4 adult diapers, 2 diaper pads that are meant to keep him dry, and a chuck sheet on the bed. His new obsession is drinking and he is expending so much energy trying to access liquid however he can. i truly don't know which of us is struggling more....I can't stand to listen to the obsession and I am sure that thinking about drinking all day long cannot be good for him. Every place he goes he notices where he can get a drink, then he works to come up with a reason that I will allow him to get a drink, then he has to put on a show to prove how "thirsty" he is......he has to be exhausted.

I waited weeks to get him into a Pediatric Urologist today and I was so hopeful that he would be able to help us......want to know what he suggests.......wait for it.....it is impressive, definitely worth his years at Medical school.........

Give him adult diapers for sleeping and collect his urine over a weekend!

As I started to get hysterical in the office I reiterated how many pullups he was using. I begged the doctor for input as to what else we could use....his answer....

DEPENDS....give the boy DEPENDS.....

what does he think we have been using for months already?
Does he have any idea how hard it will be to collect urine for matthew for a full weekend? He wants me to spend one night waking him every 2 hours to take him to the bathroom.....if I thought this would all end with a solution, I would get right on top of all of it, I promise I would....but it turns out there aren't any solutions.....there is no magic cure.

I have rarely left an appointment feeling quite so defeated. I cannot do this much longer. As a single mom I am exhausted, I am cooked, I am totally and completely done. After a small, ok, not SO small, temper tantrum, I decided to turn to bribery as my last ditch effort to see if I could get matthew to help me keep him dry. (I felt like screaming "help me Help you!" )

I have offered up gum whenever he is thirsty to see if this will help, and I have offered an overnight at his grandparents when he has 3 dry nights! To sweeten the deal, I offered to buy him a bike. Truly, right now I would give him anything for a night with dry sheets! I need a vacation, I need some time away, I need some time by myself to simply sleep.

I feel like I am teetering on the edge and the edge is getting smaller and smaller and I dont know how much longer I can hang on. Once again I am at that point where something has to give. I really need a dry bed, I think I could cope with the other ups and downs of life, if we had a dry bed, or dare I dream, 2 dry nights in a row. Please help, and pray to the gods of dryness for us, and if you have any extra prayers, feel free to pray to the god of kindergarten decisions.....I need to stop being the decision maker for a little while....maybe it is time to get a new Crazy 8 ball and see if it can make some good decisions for my family!

1 comment:

  1. (((Amie))) What a let down of an appt! I hope you get some answers soon, that stinks! And I hope that David is feeling better soon, I can only imagine your worry :(
    Oh and on the Jacob front, he STILL will receive speech, KEEP HIM BACK. He's a November baby right? I was a December baby. I was 16 in my senior year and turning 17 that December. I hated it and am a BIG advocate for waiting!! I promise you WON't be sorry!