Bridget is having a procedure that will close a hole in her heart at Boston Children’s Hospital. The other day we were here for Pre-op, almost 12 years after her first visit when we were rushed into the NICU.
I was able to see how very far we have come in our journey have having PACS1.
This summer Bridget was beyond lucky to participate in the Sail Cape Codadaptive sailing program thru the Special Olympics and Kennedy Donovan Center. Adult and teenage volunteers taught Bridget and her peers every aspect of sailing. They learned to tack, to raise the sail and to race.
Just like almost every child that lives on Cape Cod, Bridget got to experience the sea.
Bridget has this super cool friend, Charlie. Charlie is awesome. He walks her to class every day. He watches out for her at parties. Charlie is the boy that if Bridget was a typical second-grader I would be joking with his mom that I hope he stays sweet and takes her to prom one day. Continue reading →
When your child is diagnosed with cancer, mental illness, a Syndrome, ADHD, Autism, (put your child’s struggle here) or PACS1 a parents first thought is usually a variation of HOLY CRAP to what the heck do I do now?
The truth is, there is no road map to parenting a child who has more than typical needs.
Whether it is learning that your child is not suffering from normal teenage angst but a serious mental illness.
Whether it is learning that your child just isn’t making milestones but is seriously behind their peers
Whether it is learning the worst news a parent can receive, that their child may have a terminal diagnosis
Whether it is learning that your child has ADHD, something too many people think is a made up word for bad parenting
Whether it is learning that although you always fed your child healthy meals, that child is now bulimic or anorexic
Whether it is learning that your child committed a crime, even though they are a straight-A student
Whether it is learning that your child was killed in a drunk driving accident, even though they were sober in the car
When a parent learns any of the above (or worse), that is sometimes all they learn. They may be given a pamphlet of with website information. Their child may be placed on medication. Yet from this moment on, that parent is facing the battle to have their child survive without any clue of how to start. Continue reading →
It’s a pretty face. I think it is the most gorgeous face in the world. I remember looking at this face and thinking how beautiful, simply beautiful my child was. What you do not see at first glance is this picture was taken at Children’s Hospital. This was Bridget’s third month of life and third hospital admission, after five ER visits.
To those in our Government that stood up against the repeal/replacement of the Affordable Care Act, I thank you. Even if it was for a reason I do not support. The work to save our system is far from over.
I’m not quite sure why you thought this would be easy, any of you that are for or against the Affordable Care Act. Let me debunk a few myths: Continue reading →
Dear Teacher and/or Educational Support Personnel,
You do a wonderful job of caring for our children. You nurture them. You hold a parent’s expectations in check. You challenge the child and keep the parents honest. Yet sometimes in your quest to be empathetic to our families, your kindness becomes a falsehood. Especially for parents whose child has a special need. You try to understand how difficult our life can be. You want us to focus on the positives, the milestones that are achieved and the goals that are finally captured.
On April 30, 2017 during our PACS1 Family gathering we were so thankful to have Dr. Wendy Chung join us for a mini-conference. Dr. Chung is a geneticist from Columbia University in NYC. She works with Simons VIP to provide families access to research opportunities, support and information.
Initially, Simons VIP focused on certain copy number variants associated with autism. They have expanded their research to include a wider variety of genetic events that cause neurodevelopmental disorders, (like PACS1). The main goal of Simons VIP is to help provide treatment and care by identifying the genes that cause medical, cognitive and intellectual disabilities. Continue reading →
I’m finding it difficult to put into writing. Go figure, here is usually where I just let it all out. Last weekend our family traveled to Virginia to meet our PACS1 family. The weekend should have been an absolute disaster. We had 14 families traveling from around the world.
One PACS1 family traveled from Australia. The trip with their 2-year old son took 36 hours and upon entering the lobby the poor thing suffered a seizure. Being PACS1 parents meant that while the dad checked in to the front desk the mom gave medication and handled the situation. I’m sure the front desk clerk almost puked in her mouth. But PACS1 parents continue on with their lives.
Another child began vomiting and had to be admitted overnight. Again, the PACS1 parents handled the situation. One stayed at Busch Gardens with the older sibling while the other parent handled the ER. Then they switched off.
The hotel messed up 5 of the 14 reservations. Again, some would have thrown their hands in the air and gone home. Not our PACS1 families. We traveled from 4 countries to be together. Three families traveled from Texas. One family drove from Michigan. Two families from New York and another two from New Jersey. A family crossed the border from North Carolina, while still another flew from Kansas. A newly diagnosed family from Ohio was lucky when one parent couldn’t make it a friend said I’ll drive with you and became our weekend photographer. Bridget met her new best friend from Tennessee. Families from the US, Canada, Australia and Spain. Oh and our family from the Cape.
It was different than I had expected but so much more than I could have imagined.
It should have been an epic failure, but it was more awesome than I can fully describe. Continue reading →
A parent walks into the store, dragging her child kicking and screaming as other shoppers look on. A sibling walks into the store and says, “next time I will babysit so you can try to get the shopping done”.
A parent answers, “What time is it” for the 500th time with patience that is waning. A sibling tries to redirect the looping by distracting them with Disney Jr.
A parent tells her other child that they cannot attend the school play, because their sibling cannot handle the lights and sounds. A sibling whispers they understand while their heart is breaking. Continue reading →