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.