When you have a child with a rare disease or a complex medical condition there are may facts you do not know. You do not know how to navigate the healthcare and insurance systems. You do not know how many specialists, therapists and pharmacists you will meet. You do not know how many times you will endure ER visits and hospital.
It’s it in those two locations that there are some little known and unexpected facts you will need to learn. Continue reading
When you live life with a child who faces many hurdles, there are times when they will make you worry and despair.
Then there are days like this, when they put a permanent smile on your face. Continue reading
I received a text from Bridget’s teacher the other day. She was asking if something happened at home she should be aware. Bridget had been crying off and on all morning. They had never experienced this behavior before.
My first instinct was to respond welcome to my life. Continue reading
My first week back blogging and my friend Kristi made it easy for me with a Finish That Sentence Listicle.
Ten Things I Hate About …. Facebook! (and it’s not Mark Zuckerberg’s fault) Continue reading
My mother-in-law moved in about a month ago. In doing so we had to realign the bedrooms in the house. She moved into Bridget’s room (first floor) and we moved Bridget to a smaller room upstairs. Bridget only needs a bed and a dresser. In truth her bedroom was the guest room with a toddler bed in it. Continue reading
I’ve been quiet on this blog for a while, but that is going change. You deserve an explanation for both choices.
#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.
Oh my gosh they were so little
(Un)Diagnosed and still okay 