#RareDisease not so fun fact #15
While most typical marriages are at risk for divorce, special needs couples divorce rates are higher. Rare Syndrome couples even more so Continue reading
I used to love Christmas as a child. Before the freaking elf was invented, Christmas was fun and full of magic. My mom used to get upset with me when it came to Abby’s Christmas. I would never tell her it was Christmas Eve. She would just wake up (at her normal time) Christmas morning, surprised to see all the gifts.
It was perfect!
She got up at a reasonable hour, I received the best gift ever–not having to answer every single night if Santa was coming.
Then the grandmothers conspired against me. Continue reading
I try to show my appreciation to my village throughout the year, but Thanksgiving is the day to count them out loud.
Today I am thankful for these three that keep my life entertaining. Continue reading
When Bridget first entered the integrated preschool, I never thought of friendships. I was worried that she could not keep up. After all, barely off her pediatric walker she had to be taken in her stroller from the classroom to recess. I was more worried about her getting knocked to the ground than I worried about her making friends.
Then she did. It happened naturally without any parental involvement or teacher encouragement.Continue reading
Last week we went to an Open House at Bridget’s school. It was the first Open House that I’ve been to since the disastrous kindergarten play date. I didn’t want to go, but since first grade was so incredible I wanted to make sure Bridget’s second grade is as successful. We entered the school lobby, tried to explain to Bridget why she did not have her backpack and took a deep breath anticipating the sure-to-be-awful-night.
Except the House was Open and Inviting. Continue reading
I have to start this post with a bit of honesty. Those that know me understand that I am a suck it up buttercup type of person. While I do believe that you get what you give, that if you embrace this world and are kind the world will be kind in return. I do not believe in the other-world, spirits or destiny. I believe we make our own destiny by the actions we undertake. For example I believe that if I stay up all night playing Cribbage with my best brother-in-law I will have a headache the next morning. If I run an obstacle race with Lauren I will be bruised but my stomach will hurt from laughing.
I have, no word of a lie, been asked to leave a spirit shop when I brought Tia (who does believe) to a mystic (?). I was told by the woman that I was cold and not only blocking the spirits but killing their desire to interact. Apparently I was also spiritually blocking someone’s uterus. Anyway, I left (without police escort!) and have led a very happy life even if the spirits believe in me as much as I believe in them.
Then I met Beth from NJ. Continue reading
Today is October 6th. For most it is just a day. For a few friends of mine today is a day to celebrate their children, their siblings, their parents and themselves.
Today is the day to Celebrate Cerebral Palsy Day.
Which is weird, in a strange way…that you would celebrate a disability. If you don’t get that moment, that gut check of why a disability should be celebrated I (sincerely) congratulate you on your healthy child and I wish that you would celebrate how incredibly lucky your are to have them.
Those of us who have a child/sibling/spouse/relative/friend with a disability understand why these days of celebration are so important. It’s not that we celebrate the difficult life we are leading. It’s that we celebrate the triumph over the roadblocks this some-days difficult life give us. Continue reading
Bridget has always attained her milestones at a different pace than her peers. There are some milestones I never thought would happen. Some of them I was misinformed by others that she would not be able to do. As Bridget continues to defy anyone dares to put limits on her, and this week she broke through one more “she would never”. Continue reading
Your child was just diagnosed. The doctor has left the exam room. They shook your hand, told you to follow-up in six-months or a year but be sure to call them if needed.
Then they walk out.
You walk out as well, because that is what is expected. You are either pushing a baby carriage, holding tight to your toddler’s hand or trying to get your teen to look at you.
Your heart is in your throat. You want to throw up, but know people frown on that in public. You are doing your best to make it to the parking garage, to drive home, to get into the shower before you lose whatever strength is holding you together.
You cry, ugly and silently. You ask, what the freak do I do now? Continue reading
I have once again, in complete error, created a new behavior in Bridget. Bridget likes things a certain way. It’s easier to go along, than to fight all the battles. Take for example Fig Newtons. What could go wrong with a Fig Newton, you ask? They are after all one of the healthiest snack food Bridget could want to eat. They are compact, not really messy and healthy. What more could a mom ask? Then this happened: