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.

18 comments:

Sam Bennett said...

I am not local. But I follow your blog and your journey, and oh how I admire your strength and your honesty. I am praying for you and your sweet family, but is there anything I can do to help you feel less lonely?

Julia said...

I have read every single post you have ever written. Every.Single.Word. I have never commented before, and I am sorry! I hope you know that while I feel terrible that you are lonely, please know that you are never alone. We are all here following your journey and admiring your family. I will speak up more often. That is what I would want someone to do for me.

Shannon said...

Thank you for letting me know you are reading and always *here*.

Stephanie said...

I have been reading your blog for years, but have never commented. I am so sorry that I've never voiced my support. I think you and your husband are amazing parents, and I think of your family very often.

-Stephanie

Cliff, Amber & Sam said...

When my mom passed away late last year, I noticed a couple things. First, I would rather people say something, even if it's the wrong thing. Secondly, eventually life returns to normal for everyone else. The silence that comes after everything calms down is just hard. So we need those friends that will always hear our words and respond with their own.

We're listening, Shannon. And if we could move in next door, we would.

Cliff, Amber & Sam said...

When my mom passed late last year, I noticed a couple things. First, I would rather people say something than nothing. Secondly, everything eventually returns to normal for everyone else. When that silence and "normalcy" descends, it's easy to feel alone. We need folks that will both hear our words and respond with their own.

We're listening, Shannon. And if we could move in next door, we would.

Anonymous said...

Elegantly and eloquently written. I wish you were local, too.
Nancy in Kansas City

Joanne Huff said...

A beautiful post, Shannon. I can't seem to find the words for what I'm wanting to say, just wishing that this reality was different...xoxo, Joanne

Kelly said...

I worked for 6 years at Andrew's firm in Indianapolis, which is how I learned several years ago of your journey and this blog. I was deeply moved by your situation and by the way you manage to cope with it. At that time, I donated to Hundred for a Home and asked many friends and family members to do the same. I feel fortunate you allow us as blog readers to have a glimpse into your lives as you struggle with your journey. I continue to follow it, and I check in weekly to see how you are all doing. It likely sounds cliche, but I so admire your strength. I hope knowing that many of us, near and far, are following your journey and praying for you gives you some small comfort in your lonely moments. Blessings to you.

Kathryn said...

I read, and since I'm only 13, I know I can't really do anything big like the people above who commented. But I just want you to know, that I DO care. You are inspirational to me, and I do read this blog. I'm listening. <3

Shannon said...

Thanks to all of you for your comments. It is nice to hear that people are still reading and following our story. Much appreciated!!

Anonymous said...

I've been reading your blog for years as well and have never commented. I'm sorry for that. Your blog has made me smile, laugh out loud, cry and pray. In spirit, you are not alone. I am hugging you right now. Hugs! Jen in Florida.

Anonymous said...

I'm so sorry you feel lonely and left out. Just know that you have many people following your story, thingking of you and your family, and admiring you for walking this difficult walk.

Since coming across your blog a few weeks ago i have read every single post you've written and there truly isn't one single day where your family doesn't jump into my thoughts.

Hugs from Switzerland.

PK said...

Hugs to you, Shannon. If we lived anywhere near each other I'd see about coming over for coffee or just coming to hang out with you guys. Unfortunately, I'm nowhere near you but please know that I do think of and pray for you and your family. You do a wonderful job with a very difficult situation. I am always impressed by your ability to adapt to what your children need and to find the good in it, even when it's not what is expected and isn't what everyone else has.

Dawn said...

I have been reading your blog for years and check every single day for new posts. I have both smiled and cried while following you on your journey. I live in Ohio and wish we lived closer. I would love for my 6 and 3 year old daughters to play with Waverly and Oliver. I am an elementary school teacher and think "typical" children learn more than we can imagine from children with special needs. I'm sorry you are feeling lonely but know that there are still many of us supporting you!

mom2themonkeys said...

I guess I would be one of those appropriately named a lurker. I read your blog very regularly and have for many years. I pray for your family regularly. I am constantly reminded that I am incredibly blessed with a healthy family. I so admire and respect your courage and your strength. I will pray specifically that God would bring local friends into your life that can be exactly what you need for this journey you are on.

Jen Henley said...

Adding my support for your family. I follow your blog and think about you all often. I wish you could come to Massachusetts -- I'd love to get to know your children and I know Matt & Cari would love to have you here -- and you would be most welcome in our church.
But barring that, know that I admire your strength, and humor, and honesty -- and feel privileged to "know" you all, even from afar.

Jen Henley said...

I follow your blog and think about you all often. I wish you could move to Massachusetts -- I'd love to meet your family and I know Matt & Cari would love to have you here. You would be welcome at our church.
Barring that, please know that I admire your strength, humor, and honesty and I feel privileged to "know" you all, even if from afar. I hope you find the local friends you seek.