My sister and her daughters came down for the holiday weekend. They wanted to go to the National Zoo and Sunday was the perfect day. Waverly loved watching the meerkats and seal lions. Both were very active and she was able to get right up to the glass to see them play. Oliver enjoyed being outside and riding around in his chair. There is a new carousel and a very kind family offered us the tickets they were unable to use. Waverly used to always ride the zebra at the carousel on the mall, so she had to ride this zebra. She loved the first half and spent the second half of the ride pulling my hair. We never pass up an opportunity to let the kids ride. All in all, a perfect day.
Tuesday, May 28, 2013
This weekend we went to "Viva Vienna", a Memorial Day festival in Vienna. It is a great small town feel event. And my favorite part of our time there was all of the kids calling out Waverly & Oliver's names. They waved from the rides, came running over with their families and wanted to say hello. It was especially fun for Matt, since he doesn't get to experience their *popularity* at school. We often feel so isolated and alone, but it was refreshing to be noticed and welcomed.
Wednesday, May 22, 2013
Waverly's new walker was finally delivered today. I think that one took 6 months to get from doctor's prescription through insurance to delivery. The medical equipment folks brought it to her school today so we could make the necessary adjustments. I LOVE it!! It is a sturdy piece of equipment, however she didn't seem to have much trouble maneuvering it around the hallways. Unlike the one she was currently using (school owned), this one has hip guide supports and a safety strap to keep her standing. It also has a little flip down seat to take a rest. She seemed to take to it quite easily. And I am confident her 1:1 will keep her motivated and moving each and every day.
Tuesday, May 21, 2013
I have written on this topic in the past, but a very sweet friend wrote me the other day. She wanted to apologize for not being in touch as consistently as she would like to be. There are many reasons why - distance, busy lives, kids, etc. However she was totally honest and said she often doesn't know what to say, so she says nothing.
I totally get that. I wouldn't know what to say to me either.
I blame those stupid lists. What not to say to......(insert people group). Every time I read one of those I cringe realizing I have most definitely said something listed. Talk about pressure!! In an already difficult situation - dealing with a friend who lost a spouse, lost a child, was diagnosed with cancer - we feel we have to say exactly the right thing. Like there is some magic phrase to make it all better.
There isn't any wise word that is going to make the pain go away.
Just say something. Anything.
Now this isn't to say there aren't some idiotic things people say in the midst of tragedy. I have heard many of them. Yet I know the people and I understand their intention is to bring comfort. When I use my "intention filter", nothing sounds wrong.
So for those of you out there who are struggling with what to say, just say hi. Send a quick note letting the person know you are thinking of them. Give them a hug when you see them. Leave some flowers at their door. Call and say, I don't know how to help but I want you to know that I am here for you. Those small gestures mean a lot to someone who feels so isolated by their circumstances.
And to my friends. Comment on the blog. Reading it does not notify me that you are listening. Call me. I am never too busy to chat, I just may need to give you a call back. Send me a quick note or email. I love writing back. And pop by. My house is always open, albeit not always clean.
There. Pressure gone.
Jill's House hosted a very special event on Sunday night called the Joy Prom. It was a dance for the kids who attend Jill's House. Get dressed up, walk a red carpet, get your picture taken, take a ride in a limo. We decided to make it a little Daddy/Daughter dance. I bought Waverly a beautiful little dress with a little pink ribbon with pearls necklace. And of course Matt had to wear a matching pink tie. They looked fantastic!!
Wednesday, May 15, 2013
Today we celebrated International MPS Awareness Day. We dressed in purple, the color of MPS and courage. (I snapped this pic before school.) So many of the students and staff at their school were wearing purple. It is such a simple gesture, but it means so very much to us. Our hope is that people will ask why an entire family is wearing purple and it provides an opportunity to spread awareness.
Wavey & Ollie
Tuesday, May 14, 2013
Monday, May 13, 2013
This Wednesday May 15th is MPS Awareness Day. Please join us by wearing PURPLE to show your support and to help us raise awareness. There are parents desperate for a cure. And there are also parents desperate for answers as to what is going on with their child. By raising awareness we can help bring about additional diagnoses and continue our push to further research so we can find a cure.
Sunday, May 12, 2013
Happy Mother's Day to Shannon! Your babies will never be able to thank you in their own words, but they have named me their official spokesman. So on behalf of Waverly and Oliver: thank you for taking us to doctor and therapy appointments (as many as 10 in some weeks), advocating for us at school, keeping us with our friends and teachers at Vienna even though you have to drop us off and pick us up (in DC area traffic!), staying up top of our feeding supplies, medicines, and medical equipment, for packing lunches, making meals, and hooking me (Wavey) up for feedings every afternoon at 1:00 and every night at 9:30, for fighting with our insurance companies, for planning fantastically fun weekends and vacations, for managing our wardrobes and keeping us looking good, and especially for all the snuggles and cuddles. You have truly laid down your life for ours, and there is no greater love than that! We love you (and so does the official spokesman), and hope you have a wonderful Mother's Day!!!
My very dear friend, Kamarah, and her family came to visit us last week for a few days. Many of you know Kamarah as one of my two friends from college who created the "A Hundred for a Home" fundraiser. She has been one of my closest friends for 16 years. And, alas, lives very far away.
It was such a treat to have her and her lovely family visit. They were *finally* able to see our house - the house made possible because of her incredible desire to help our family. Our kids were able to interact and we were able to take them site seeing around DC.
(Kamarah is a photographer, so I am positive she will have some fantastic photos to share once she is home and finishes editing them. Here are a few from my phone.)
Kamarah & I in front of the Lincoln Memorial
Oliver after dinner at Founding Farmers
Waverly enjoying the beautiful day.
Oliver jumping as the thoroughbreds galloped past us.
Last weekend we spent the day in Maryland at a Steeplechase Race. One of Matt's colleagues invited us, thinking it would be a fun outing for the kids. It was a gorgeous day full of sunshine. There were service dogs there preparing to be placed with members of the military. There was a dog agility show. And of course horses. There were thoroughbreds, fox hunters and pony races. It was a lovely event and a wonderful way to spend the day.