Our inaugural campaign has kicked off! Step Up to END AHC is a call to action for families to raise, not donate, $500 to fund ongoing and new research into AHC. Joining the effort is easy and personal. Follow the link for information on how to easily join the campaign through the end of the year, and beyond if you wish. So, STEP UP and help to END AHC for all the AHC kids and their families.
#AHC #ENDAHC #AHCF
This weekend we had an engagement for our oldest daughter. It was a lovely affair with family, the bridal party and close friends. Of course, AHC reared its ugly head and Kathleen went into an episode an hour before the guests started to arrive. She never joined the party.
We decided to have Kathleen’s aide be present to take care of Kathleen so that I (because it is usually me she wants) could be free to meet my future son-in-laws family and just mingle with our guests. It is hard not to feel guilty that we are enjoying ourselves when she is stuck in her room. Many family members and her young cousin stayed for a time with her but it just wasn’t the same.
With Kathleen’s anxiety increasing, it is so hard to plan for these momentous events. No matter how we try to maintain normalcy and keep calm, we can’t control how she feels nor can we skip these precious moments.
Let’s continue to raise awareness, raise funds for research and work together to find a treatment for our kids so that they can participate and enjoy the events around them!
Share your experiences with us in the comments section. How do you keep moving forward when AHC episodes come up?
We have so many new parents who are struggling with the diagnosis of AHC. No matter how much we tell ourselves that we are happy to put a name to what our children are suffering from, it is the unknown journey that we are about to travel that has us scared and terrified. I was given this poem in 1994 by another AHC parent. It was a time when I was having trouble coping with the uncertainty of how our lives had changed and the ups and downs of having a child with AHC. My daughter was four years old.
WELCOME TO HOLLAND by Emily Perl Kingsley
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills…and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very, very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
I can tell you first hand that while my daughter’s diagnosis at ten months sent us reeling, she was a blessing and a joy and has far surpassed anything we could ever hope for her. On the good days and the bad days, we celebrate the accomplishments she achieves everyday!
We are pleased to announce that our event ‘Wine Women and Shoes benefiting the Alternating Hemiplegia of Childhood’ was a huge success. Because of the support and generosity of our sponsors, donors and guests,
we raised over $80,000.00 for research!
Look for the full summary and additional photo’s in the June Newsletter this week!
However, the next day, there was hell to pay! It seemed that our absence the night before was the catalyst for increased behavior and neediness. We started to weigh whether it was worth it…and we always agreed that it was!