Meet the McNeil Family

Meet the McNeil Family

Thursday, January 31, 2013

Another Planet

I love the poem "Welcome to Holland". It inspired the title of my blog and can be found to the right. I was sent it soon after the kids were diagnosed with Sanfilippo Syndrome and it resonated within me. All that I had imagined our lives would be was no more. 

Now almost 5 years post diagnosis, our "vacation" to Holland has turned into a relocation. And Holland has become a bit more like another planet. My feet are firmly planted in this other world, dominated by orthotics, feeding tubes, durable medical equipment, OT, PT, IEPs. I am finding it more difficult to navigate the real world. As Waverly & Oliver get older, the differences between them and their peers is much more significant. And I am finding that my friends with "typical" kids are slowly pulling away. Our kids can't play together as easily, maybe their kids are asking tougher questions, or maybe they simply can't cope being around children who are slowly dying. I get it, but I am feeling more isolated. In talking with other Sanfilippo families, many have a child who is "typical". That child can provide a lifeline to the real world. I often wish I had that.

Simply put, I am incredibly lonely. I see friends getting together with their kids and we aren't included. I have friends who I thought would walk with me on this journey, who have disappeared. And at this stage, how do I go about making new friends who want to come along side of me and walk this very difficult walk.

I spoke with a friend recently who lost a child many years ago. And in talking about friendships, he mentioned how many went by the wayside because they weren't able to cope or didn't know what to say. This is one of the reasons I hate those "what not to say" lists. It puts so much pressure on people who fear saying the "wrong" thing that they simply avoid saying anything at all. It is much more about intention

Thankfully I have been surprised by people supporting me and loving me through this journey. I only wish they were more local.

Tuesday, January 29, 2013

Waverly's Friend Erin

One of Waverly's best friends came over for a visit last week. Waverly's 1:1 from a few years ago was back in town. (Silly girl had to get married and move to Hawaii on us!!) The moment Erin walked into the room, Waverly lit up. She put her arm around Erin's neck and didn't let go all night. It was beautiful.

Matt and I loved watching them interact. We don't get to see Wavey with "friends" very often, so this was a real treat. A total glimpse of her personality as a faithful and affectionate friend. We are so appreciative of all Erin did for Waverly and we are so grateful she took time out of her busy schedule to fit in a visit.

Freedom

My lovely little girl is having a lot of difficulty walking once again. Ever since our vacation, her ability to stand on her own has deteriorated rapidly. As with so many things because of Sanfilippo, we are never sure if this is our new normal or if she will once again bounce back. She can no longer stand on her own - she will almost immediately try to sit, with no ability to see if there is actually a chair to land on. Her left leg is worse off - lots of toe walking and her knee is constantly bent. It looks incredibly painful.
Last week I actually leg go of her hand for a second and she took a step. I was an arm length away from her and she walked towards me. I was able to snap a quick pic. I love this picture. It shows such freedom. A friend recently said to me that watching our children lose the ability to walk is watching them lose their sense of freedom. That spoke volumes to me. So true.

I hope that I will be able to take more photos of Waverly taking a few independent steps. I hope this isn't the last time. At least I captured it. Her smile. The tilt of her head in delight as she moves towards me. Beauty. My beauty.

Other Disney Highlights

 Oliver wasn't all interested in the characters during meal time. He was much more interested in watching "Mickey Mouse Clubhouse" on the iPad. Here is Pluto watching with him - Oliver totally unaware he was even there.

 Best memory of the trip was during the afternoon parade. Goofy, Donald and Pluto all came running over to Waverly. She was giggling and smiling, so happy to see all of them. Thank you Disney characters for making my little girl so incredibly happy.

 Waverly used to always say "Dumbo's mommy" while watching "Dumbo". And she would cry when the mom was punished and put in solitary. I found this adorable stuffed Mrs. Jumbo and she had to have it.

 Oliver in his German inspired Mickey ears riding on the train. He loves the rides outside, especially those that involve a type of transportation. I think the train, buses and monorail are his favorites.

Waverly was an excellent driver on this trip. She held the steering wheel the entire time. She was so happy driving me around the track a few times.

My Michele

 One of my best friends, who lives in Costa Rica, happened to be in Orlando the same time we were there. Many of you know her as one of my two friends who spearheaded the "A Hundred for a Home" fundraiser for our family. We don't get to see one another often, so this brief crossing of paths was a true blessing. We spent a morning with her and her family. I was *finally* able to meet her daughter and she was able to see the kids again (it has been 4 years since she has seen them).


She loves my kids deeply. And her desire to understand life in my shoes is so completely evident. And appreciated. I am so fortunate to call her a friend. And I am so thankful I was able to sit on the sidewalk in the midst of Downtown Disney, lost in conversation with her for a few short hours.

Friends Who Truly Understand

(I am still trying to catch my breath after our vacation earlier this month. My plan tonight is to catch up on the blog and try to recommit to writing more often.)

One of my favorite moments from our vacation was our time with a very special couple. A few years ago, our local paper did a story about the kids. Our family photo was on the front page. A few days after the story was printed, Matt got a message from a local woman. She and her husband had a son with Sanfilippo who passed away many years ago. (He actually would have been the same age as Matt and I.) Over the course of a few get togethers and emails exchanges, Matt and I have developed a real friendship with them. They have since left VA and moved to FL. Thankfully, we were able to get together with them during our time at Disney.

It is incredibly comforting to have another couple to talk with, who have been through the grief of losing a child. Who continue to grieve that loss. We are free to ask the tough questions and know we will get honest responses.

We love seeing them because they love seeing our kids. Oliver holds a very special place in their hearts, because he brings back such lovely memories of their son. Oliver is a bit more difficult to connect with - people have always been more easily drawn to Waverly. She is affectionate, wants to look directly into your eyes, and laughs along with you. Oliver tends to be slower to warm up. He doesn't always look you in the eye, instead giving occasional deep glances. He is independent. They adore both of them. And I am so glad seeing them can bring them joy.

Thursday, January 17, 2013

Disney With Friends

Our primary reason for heading to Disney World was to see our dear friends from England. They were coming to Florida to stay at "Give Kids The World" for their daughter's Make-a-Wish trip. We have visited them in the UK before, but we were thrilled with the opportunity to meet them at Disney. If they were in the US, we were going to do whatever we could do to see them.

Disney World was incredibly busy for our first few days, which was such a sad introduction to such a magical place. The Magic Kingdom was virtually unwalkable - too many people. We made the best of it and with 4 kids in wheelchairs and 2 kids on foot, navigated the parks as best we could.

We were fortunate to be able to have our car on this trip, so we also spent one morning over at Give Kids the World. We walked the grounds, played on the playground, got ice cream and reminisced about our time there a few years ago.

There are some families with whom we just click. We understand one another apart from Sanfilippo. Those are the true friends I have made along this journey. Nicki and her family are one of our favorites. They are the most patient parents I have ever met. And their kids are truly lovely inside and out. We had such a fantastic time with them and I only wish we would have had more.

Paul & Tom at Animal Kingdom

Oliver and GG waiting to ride

Waverly & Sophie swinging at GKTW

Smiley Wavey enjoying the swing

Happy Boy


I have a lot of blog updating to do since returning from our wonderful Disney adventure last week. So many photos and stories to share. But for now, here is a smiley photo of Oliver from his last day of school before Christmas break. Love my happy little boy.