Monday, July 23, 2012
Sunday, July 15, 2012
I have pulled away from the MPS community as of late. It has been a gradual process and not fully intentional. As Waverly and Oliver get older, I find myself becoming much more aware of their very short life spans. I began to realize that this support system of other moms who are also facing Sanfilippo, means my grieving is going to increase as I watch friends mourn the loss of their children. When the kids were first diagnosed, I searched out as many parents as I could find who *understood*. Eventually, I found a group of families with whom I shared an extra special bond. We visit one another, talk on the phone, and provide a level of support that is so desperately needed given our situations.
I remember "watching" families of older children on the message boards and conferences. Some of them seemed distant and difficult to connect with. One mom, with whom I eventually got to know better as the years went by, said that she was hesitant to get to know new families. She had watched so many children pass away whose moms were a support to her when her daughter was diagnosed. It became too painful to keep adding families, knowing she would watch their loss one day. I understood, but not fully.
One can't fully understand that perspective until you are faced with it. And here I sit. A dear friend's daughter is in the final stage, most likely her final days. The sorrow I feel is deep within. My mind is constantly wondering how the family is doing, what they are doing. And then I drift to how will I do, what will I do. I have been looking at Waverly differently today. Trying to memorize her and will her to say "mommy" one more time. I imagine her final days and then I snap myself back to the present, unable to allow myself to go there for long.
Please keep my friend's family in your thoughts and prayers. Give the children in your life an extra big hug.
Saturday, July 14, 2012
DC, MD and NOVA friends: Go out for dinner for a wonderful cause!!! The next 3 Tuesdays you can head to one of the listed California Pizza Kitchens, eat great food and the restaurant will donate 20% of your bill to the National MPS Society. Every little bit adds up to helping us find a cure for Sanfilippo Syndrome and other MPS diseases. Just remember to print up the flyer and bring it with you!!! Share with your friends.
Friday, July 13, 2012
We are settling into a new summer routine.
Oliver started summer school this week. He has preschool in the mornings for the next 4 weeks to help him maintain his skills and prepare for Kindergarten in September. He is with his former preschool teacher, so he is happily running to her each morning and enjoying a bus ride home.
Waverly has been attending day camps at Jill's House. I cannot say enough wonderful things about the work Jill's House does for our family. Not only do they provide families with weekend respite, but they also host day camps in the summer and school breaks. We opted for day camps instead of summer school this year, because we didn't know any of the teachers at her assigned school. Plus we knew she would have such fun playing outside, swimming, having art & music, etc at Jill's House.
As always, once we settle into a routine new changes appear. Waverly has been very wobbly on her feet the past few weeks. She is very slow to find her balance in the morning after she gets out of bed. Her joints are stiffening. And she is falling for no apparent reason. It looks as if her hip is simply giving out and she drops to the ground. She has been on a pureed diet for months now. We knew the day would come when we would need to get her a feeding tube (g-tube) and we feel we are rapidly approaching that day. Thankfully, she hasn't developed pneumonia from aspiration or had any scary choking episodes. However we always wanted to be proactive when it came to her health. With cold and flu season beginning in the winter, we are consulting with our doctors about moving forward with the surgery in the fall. We are meeting with a new GI doctor next month and I hope we leave the appointment feeling confident in a decision. As a mom, there is nothing more basic than keeping your child well fed. Transitioning to reliance on a medical device to do that is not an easy step emotionally.
And as Waverly begins to slow down, Oliver is changing as well. He has always been good about getting out of the car and running to the door to wait for me or standing by the car as I get Waverly out. No longer. He now runs away, almost frantic like. I have to keep a much closer eye on him and hold his hands at all times.
In the midst of all of these changes, it is impossible to not get emotional. I have been struggling with sadness and anger over Sanfilippo. One of the difficulties of this disease is that you are constantly moving through periods of grief as abilities are lost, words disappear. I am grieving new losses and fearing the changes that are to come.
Thursday, July 5, 2012
Waverly & I have the opportunity to fly to London to spend a week with Matt. (Oliver had a very special week with my parents in PA.) After a few weeks apart, a reunion in such a special city was perfect. Thankfully Waverly did great on the plane and adjusted to the time change like a champ. She is such an easy going traveller. Here are a few photos highlights of our trip:
Here are Matt and Waverly in Grosvenor Square
Matt & Wavey in front of Buckingham Palace
Matt & Wavey in Regent's Park
Matt & Wavey at the Diana Memorial Playground
Peppa Pig World with friends!!!
Matt had to work during the week, so Waverly and I visited the old neighborhood, shopping, went to the zoo and enjoyed the lovely London parks. We spent Saturday with Matt exploring our old favorite London haunts. And Sunday was the highlight of our trip. We met up with some dear friends, who also have 2 children with Sanfilippo. We spent the day with them at Peppa Pig World (a favorite character of Waverly & Oliver - came home with loads of souvenirs). They are such an amazing family and we were so excited to finally introduce Waverly to them.
Here is a photo of Sophie & Waverly - together at last, together forever.
Our time in London brought back some wonderful memories of living there with the kids before they were diagnosed. We were even able to meet up with Waverly's former speech therapist, which was a real treat for us. As we wandered the city, we were flooded with memories. It was lovely to remember them so vividly. We had such blissful years there - no Sanfilippo. Sadness crept in every so often, but thankfully we were able to keep it at bay. Simply enjoying the present, on a very special trip with our little girl.
Wednesday, July 4, 2012
We have been MIA for the past month. Matt was in the UK for the month of June, so it was just the kids and I (along with help from my mom and cousin). I had zero time to blog, but I hope to catch up within the next few days. Just wanted to let you all know that we are fine. More to come....