Bridget has been trying to learn her letters for about 3 years. We have struggled with her learning the letters in her name. We jumped with joy when she started saying: B, Bridget. We thought YES!! She is learning her letters.
We were wrong. She only knew the “B” and no matter how we tried we were not successful in her learning her letters. Continue reading
Bridget has been in therapy since she was 3 months old. She began speech therapy before her second birthday. We started at three visits a week, then went down to two. Since beginning kindergarten we have decreased the visits to once a week.
Between physical, occupational, hydro and speech therapy we are at the pediatric rehab center two to four afternoons a week. Sometimes we are lucky and can do visits back to back. But that means Bridget leaves the house at 8:30 in the morning and doesn’t get home until 6 in the evening.
It’s become our second home and our safety net. Continue reading
If we were having a glass of wine, I would tell you that life has been incredible. It’s been beyond busy, which has taken a toll on my writing and running. Yet it has been the happy kind of chaos.
If we were having a glass of wine, I would tell you that David and I had dinner alone the other night. We had a chance to reconnect (aka not talk about the girls). It has been too long since we have had that couple time. It was nice to remember why we married one another! Continue reading
One of the biggest fears I ever had to face, I didn’t know I possessed. When you have a child, you only imagine them healthy. You never imagine seeing them in the hospital, or working so hard to just say the word mom. You might, in the back of your mind, worry. You do not understand how true fear tastes.
The fears become accumulative. Continue reading
“Mom, when can I sit in the front seat?” said my child who is still small enough to use a booster seat but old enough that she wants to be the tween.
I remember the first time I had to place her in a car seat. How it took us three hours to figure out how even install the thing. I remember when we would keep her strapped into the car carrier while we grocery shopped. How I didn’t know how to put the car carrier on the grocery cart, so I put it inside and piled up the groceries around it. (Least expensive shopping trip ever). Continue reading
Every March I’m asked why out of all the fights I have to compete in for Bridget, why is ending the use of the word retarded so important?
I understand the question. I know that I have to choose my battles. That I only have so much mental energy and need to be careful how I expend it.
To those who ask the question, why is the R word fight so important I have this answer:
Because having Bridget accepted for who she is, for opening up doors for her and to have her be included… every one of those battles begins at the R word. I never want to imagine that when it is said that something is retarded, they mean mentally challenged. The truth is, they usually do when the term is used to describe a person or a person’s actions.
When someone uses the word retarded to describe another person they are saying that person is less-than, that person doesn’t have value or that person is “not right” in their head. They are saying that the person is mentally incapable or intellectually challenged.
Bridget is intellectually challenged. When you say, that Bozo is retarded you are not saying he is brilliant or spectacular. You are saying he is mentally challenged. Or are you saying something else? Continue reading
In September I was terrified of Bridget entering kindergarten and transitioning from the Spinnaker program to a new self-contained special education classroom. Even though I knew the special education teacher for years, leaving the sanctuary of Spinnaker was heart wrenching.
I knew I was over-reacting and worrying for nothing. However loud the brain is shouting, the heart beat of panic is louder. Six months later I am happy to report that not only are we surviving kindergarten, Bridget is thriving. Continue reading
Today is Rare Disease Day. Kind of funny that they scheduled it on Leap Day, a rare day that only happens every four years.
I would love to be one in four.
When you are a rare disease/syndrome you are one in a million. In the case of PACS1 you are 1 in an unknown number. When you are a Pitts/Hopkins kid you are one in 300,000. It doesn’t matter if you are 1 in 10 or 1 in billions, if you have a rare disease/syndrome all you feel is alone. Continue reading
In February 2015 there were 19 confirmed cases of people who have PACS1 Syndrome. As more children have Exome sequencing, we have grown to 32 (known) families. In a year. Thanks to this blog, I am sometimes the first point of contact for the newly diagnosed. It is a role I cherish yet at times feel sad that I cannot provide the answers they may be looking for.
Welcome to the PACS1 family! Now what? Continue reading
(Un)Diagnosed and still okay 