I tend to shy away from discussing 2 things - politics & religion. But, I am going to touch on one of those subjects today. My faith has been shaken by Waverly & Oliver's diagnosis. I am angry and confused by what we are facing. I am filled with questions that will never be answered completely for me. Today I was listening to a song that I used to love and a part of the song touched me in a very deep way. It is from the song "Depth of Mercy" and it says:
"There for me the Savior stands. Shows His wounds and spreads His hands. God is love, I know I feel. Jesus weeps and loves me still."
I am working on updating the look of our blog. The new photos were taken by a wonderful couple, Teri & David, of Murikami Photography in the UK. My friend, Natalie, arranged to have them come up to London to take some photos of our family. They were a joy to work with and they took some incredible photos of the kids. Thank you Teri & David!!!
I had a bad day. I visited Waverly's new school and I was not impressed. I am not sure they understand the severity of her condition. I feel lost and confused by the system and I wish that I hadn't left the safety of our therapy & school in London. Matt and I were both incredibly sad tonight. Waverly is changing before our eyes. Every day we lose a piece of her - not in a cliche way. I mean we can actually see things she can no longer do. She can't answer the "what's your name?" question. She can't use a spoon anymore. She can't hold a crayon anymore. It is heartbreaking. This whole situation is so incomprehensible. I cannot fully grasp the fact that both of my kids are dying and I am watching it.
This afternoon I took both kids to our pediatrician for possible ear infections. If they get a cold, it will almost always turn into an ear infection. It did for both of them yet again. We have to be extra careful with those because of their hearing loss. We don't want to risk damaging their ears or impeding their hearing even more. We went to the same pediatrician from the last time we lived in the area. She was with us through Oliver's traumatic birth with time in the NICU and the diagnosis of hearing losses. She is great! The second she came into the exam room, I knew that this is why we came back to the US. She was so great with the kids and me. She offered to have a consult in 2 weeks where she and I can sit down (sans kids) and put together a plan. I am just supposed to come with a list of questions/requests and we will go from there. She doesn't have any experience with Sanfilippo, but she is ready & willing to learn along with me as we go forward. When I left the office, I was moved to tears. I was so thankful to finally have someone manage their healthcare with me. I always felt like I had to be on top of it all by myself and it was such a burden to carry alone. Now, I feel like someone came beside me and took off some of the load. It is wonderful! Thank you Dr. Kelly!!!
During my 3.5 hour time alone, I stepped into a Barnes & Noble. I love spending time in book stores. I went to the parenting/special needs section and scanned...hoping to find something with the title "Just for Shannon" or "Parenting Waverly & Oliver". To my surprise, I couldn't find anything. I did find a book that stood out to me. It is titled "Road Map to Holland". The author is the mom of 3 boys, one of whom has Down syndrome. She is an incredibly talented writer and I felt like she was writing for me. She has a way with words that I only wish I had. I have already finished it and Matt is going to start reading it soon. I also have a few friends who want to read it, to have a better understanding of what I am feeling.
I miss London in many ways, but tonight I really miss walking in our neighborhood. We lived in St John's Wood. A beautiful area north of Regent's Park. After dinner, we would always pack up the kids and go for our nightly stroll. Here, all we have found are apartment parking lots. I miss the High Street and SJW church park. I miss passing by Paul McCartney's house and wondering if I will catch another glimpse of him. I miss seeing them rolling back the awning at Panzer's. I miss the happy sounds coming out of the local pubs. I miss London tonight.
We went up to my parent's house this past weekend. We had left a bunch of things up there - including booster seats and toys - that we desperately needed. We had a great weekend. I had 3.5 hours of uninterrupted "me time" sitting outside with a book and a cup of coffee. It was wonderful! I think we have settled on renting an apartment for the next year. We are going to downsize to a 2 bedroom to save money. I don't think it will be a problem, since Wavey sleeps with us most of the time anyway. This apartment has proved to be so cosy and I feel so at home here. I am excited to have our own furnishing and make it our own.
I had a meeting this morning with the Infant & Toddler's Connection. They will be managing Oliver's therapy until he is 3. We go in next week for an evaluation and then we can set up services. The therapists will come to our home. It is going to be really nice for us. I should also find out Waverly's placement for school within the next few days. I am anxious to see what services they offer and how it will work out for us.
I just changed the title of my blog. Now that we are no longer in London, it seemed silly to keep the title. I tried to find another Clash inspired title, but none worked. So instead, I settled on a title that references a popular little poem written by a mother of a child with special needs. I read it months ago and I loved it.
WELCOME TO HOLLAND by Emily Perl Kingsley
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 plans 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 for some time, the pain of that will never go away...because the loss of that dream is a 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.
We are still waiting on the enzyme results for Oliver. Our neurologist is on maternity leave, so it has been more difficult to get someone to chase down the results for us. With all of the waiting we have endured this past year, you would think that I would be more patient. I am not. Oli is doing well. He is walking all over the apartment and he is into everything. We will definitely have to baby proof. We never had to really do that with Waverly. Wavey is rapidly changing before our eyes and it is painful to watch. She is having trouble using a spoon now, so she requires more help eating. She is also having more twitches or spasms. She has a difficult time controlling her movements and she wrings her hands constantly. Her speech has changed so much within the past month. She struggles to get a phrase out - she just stutters for 10-20 seconds before she can can the word out. Her vocabulary is also getting smaller. But, she can still sing! She has been singing her songs - happy birthday, winnie the pooh, mickey mouse clubhouse theme, happy and you know it, ring around the rosey, head shoulders knees & toes - louder than ever. London provided a buffer for us. Death couldn't reach us there. Now that we are home, everything feels much more real and much scarier.
We have moved into our temporary apartment in Virginia. It feels good to be in one place for the next 2 months. I LOVE our new place. The apartment we have on hold to move into in October is actually in the same complex, which will make for an easy move. I spent a few hours yesterday driving around the area and getting a feel for the place. I think we found such a great place to settle. First impressions are good. I am waiting for Wavey's birth certificate to arrive and then I can go in and officially register her for school. I think she will start just after Labor Day. I have a meeting next week with the group that will take care of Oliver's therapy. It will be nice to get a schedule in place. We all work better that way.
We are leaving for DC today. We will be in a hotel for 2 days before moving into our temporary apartment. We will begin our house hunt as soon as we arrive. We are hoping to find the "perfect" house at a good deal all ready for us to move into. (I may be dreaming a little.) But, it would sure be nice if we could settle into a home. That is our desire.
I just got a message from the MPS Society about some of the fundraiser walk/runs going on all over the country. I know that we have a lot of runners checking our blog, so I thought that I would list some races in case you are interested. This is a great way to show your support for families all over the country affected by MPS. Please contact me if you want details about the races and who to contact to sign up.
We would love to organize a run in honor of Waverly & Oliver eventually....maybe next year, when we are more settled into a community.
August *August 30, 2008 Guttenberg, IA River Run for Ryan
September *September 13, 2008 Auburn, MI Sowden Family & Friends Walk for a Cure *September 14, 2008 Cedar Rapids, IA Laps for Lucas *September 20, 2008 Ames, IA Heartland Run for MPS *September 20, 2008 Eden Prairie MN Jack's Run for MPS *September 20, 2008 Eagan, MN MPS and Mito Walk/Run 2008 *September 20, 2008 Grand Rapids, MI Miles for MPS *September 20, 2008 Abilene, TX Teagan's Run for MPS *September 27, 2008 Woodstock, GA 9th Annual Run for Erin
October *October 11, 2008 Sellersville, PA Ryan's Run *October 11, 2008 Poquoson, VA Mackenzie's 5K Run/Walk for MPS *October 11, 2008 Fort Worth, TX MPS Run for Their Lives *October 12, 2008 Downingtown, PA 5K for Katie/Do it for Danny *October 18, 2008 Clarksburg, OH Andrew's Walk and Roll for MPS *October 18, 2008 Babylon, NY Post Office Café 17th Annual 5K Run & 1K Fun Run for MPS *October 18, 2008 Mountain Grove, MO Evan Reed Family Fun Run *October 18, 2008 La Verne, CA MPS Walk & Run LA *October 19, 2008 Novato, CA BioMarin/MPS 5K Run/Walk
Matt and I were able to get away last night and enjoy a night at the Glasbern - a beautiful B&B just a few miles away from my mom's house. We actually honeymooned there almost 10 years ago and we have always wanted to go back. We had our own little cottage and I had packed a picnic dinner. We spent the evening on the balcony eating, drinking and having a wonderful time. It was a much needed escape for us. I was sad to have to leave this morning.
My great aunt passed away last week and I was able to attend her funeral on Saturday. It was sudden and so sad for our family. It provided a time to see family I wouldn't normally see.
A friend of mine gave the kids some wonderful gifts of toys on Sunday. Her kids were sad to think about having to pack up all of their things and not see them for awhile, so they picked out some items for Waverly and Oliver. (The bubbles, books, animal train and stuffed Pooh Bear have been HUGE hits, Kristin!! Thank you so much.)
We had an appointment at CHoP and did get some additional results. We found out that Waverly's enzyme level is zero, meaning she is totally unable to break down the problem causing protein. Some kids with MPS III still have a low level, but she has none. Our neurologist confirmed that this will mean Wavey will have the most aggressive form of the disease. We are still waiting on Oliver's numbers. This was proof positive for Matt and I that returning to the US and creating a home here is the absolute best decision for our family.
Wow - the last week flew by so quickly. Our pack out went so smoothly. By 4pm all of our things were packed in crates ready to be taken away. We went to a wonderful festival on Saturday in Regent's Park with some friends from the embassy. The kids were able to go on rides, eat yummy food and enjoy a beautiful day....until it poured. It was a perfect London afternoon. Sunday we explored the city, revisiting all of our favorite haunts and taping the kids a bunch. We were able to get family photos taken on Monday in Regent's Park, thanks to my friend Natalie. (Thank you, Natalie!!!) I can't wait to see them!! They just followed us around and captured the kids playing in some of their favorite areas. The kids had their final sessions with their therapist, Priya. It was very difficult to say goodbye to her. She has been incredible and I think Waverly is really going to miss her. Saying goodbye was tough. Fortunately, so many of our foreign service friends will be back in DC eventually, so we know that we will catch up with them down the road. London was such a wonderful experience for all of our family. I don't think that it has totally hit us that we aren't flying back there in a few weeks. London was a refuge for us...an escape from the sadness at times. We are sad to see our "world adventure" chapter end.
The movers will be here in about an hour and I think we have everything ready to pack. Matt is going to take the kids out of the house for most of the day, while I stay here and direct the movers. Hopefully all will go smoothly and tonight we can relax knowing this part is finished.
We went out for dinner last night with some of Matt's work colleagues. We had a ball! They are such a friendly and fun bunch of people - I see why Matt enjoys going to work every day.
The kids are both doing well and they don't seem to be bothered that things are turned upside down in the flat. Waverly is entering her last few days of therapy, which will be difficult. She doesn't understand that she won't see them anymore, but I know she is really going to miss them.
The blog will be on a hiatus for about a week. We don't have a laptop, so our computer will be packed up later today. I will be back in touch with all of you soon, when we are stateside. We will be spending about a week in PA visiting family and going to doctor appointments. Then we will be off to VA to begin the next chapter.