Weltschmerz

I've never heard of the word weltschmerz until I read a book called Running is my Therapy by Scott Douglas. In there, he described weltschmerz as "a German word meaning sadness about how reality doesn't live up to one's hopes." His description was centered around his diagnosis with depression and how that word captures for him the struggle with reality, how he fits into the world and what truly matters.

When I read that passage, the word itself resonated with me because I've often said that disappointment comes when our expectations aren't met. We get frustrated, upset, sad and stressed in life when our expectations don't become reality. If we can set aside the expectations and live in the moment, our lives are more fulfilling.

This sentiment resonates with me. I have the the saying, "Love the life you have, not the life you expected to have," resting on one of our family pictures. It's true of everyone, but it's especially true for me as Teddy's mom.

This is an ordinary moment in the life I have.

There's a poem called Welcome to Holland, along with a follow up that addresses the emotions years later. I've heard from many parents of children with disabilities that these poems resonate with them, ease their sorrow in the early days of diagnosis and put words to what they're experiencing. In my mind, Welcome to Holland could be summed up in a single German word: weltschmerz.

Putting a word to this harder to explain sentiment is handy to me. It doesn't change the life we have, but it gives me a word for the feeling that comes when I forget to live in the moment. Now I just need to learn a beautiful German word that captures the essence of living in the moment to counteract any weltschmerz I might experience. 

It Truly is the World Wide Web

If you read the About Me section of this blog, you'll see that I wrote:

We decided one thing we could do was start a blog to create a bit more awareness and give other families with this disorder the opportunity to connect. 

We started this blog within a few months of getting Teddy's diagnosis. There was so little information available, and so much of it was so dismal and didn't match our experience with Teddy. We wanted to put more information, including more positive (yet realistic) information out there, for others searching for this diagnosis. We also wanted to provide a way for other families to connect, particularly before we found our amazing Facebook group of families.

In those early days, there were perhaps 5 other families in our Facebook group. It was a big deal when every six months or so another family got added. In the past two weeks, though, we've added 3 more families with CDG-PIGN to our Facebook group. That absolutely blows my mind that we're growing so much and that families are getting connected to this amazing resource sometimes even the same day they get the earth-shattering diagnosis.

The thing that's made my day, twice this year, is that I've had two different mothers reach out to me after reading this blog. One doesn't use social media, so she wouldn't find our Facebook group. The other came across the blog while searching the Internet and reached out, so I could connect her to the Facebook group. That particular mom is from Germany. This blog is reaching out around the world to connect others, to give them hope and to bring them into our group of CDG-PIGN families where they have all of us to use as a resource.

When that mom told me that she spent much of her day reading my blog, it just made me smile. Everything on here isn't all sunshine and roses because life isn't always easy (for anyone, regardless of diagnosis or not). But it's realistic, and there's so much positive in our life with Teddy. I'm grateful that even these two families have been impacted by this blog.

And with World CDG Awareness Day coming up May 16, I'm hoping to do another round-up that will include as many of our CDG-PIGN kiddos as possible. Those seem to be the posts that spread like wildfire and reach the farthest. That, and our kids are adorable and amazing, so the world needs to see them. 

Focus on the Possibilities

Today I saw two different inspiring stories that emphasized the same point: focus on what you can do, not what you cannot.

One of the first Super Bowl ads for Toyota was called Good Odds. Within the first few seconds of the commercial, Dave called my attention to the commercial because he knew it was going to be good. And it was. The commercial, available at this link on YouTube, features Lauren Woolstencroft. She beat the odds to win, not one, but eight Paralympic gold medals. It's one minute well worth watching.

The only thing I wish about this was that I knew about Lauren before this commercial. We often hear so much about those athletes, the Shawn Whites and Lindsay Vonns, who compete in the Olympics before the Paralympics. The the coverage of the Paralympics is non-existent, which means most of us don't know about those athletes, many of whom overcome even more challenges than the Olympians who compete in the two weeks prior to them.

The first story I saw today gives me hope because it focused on an athlete who competes both in adapted sports (and from the little bit I saw, adapted hockey seems way more interesting and challenging than traditional hockey) and traditional sports. CBS Sunday Morning featured a high school athlete named Danny Lilya.

Danny was born with a separated spine, which means he uses a wheelchair for mobility. Yet he plays football. Yes, you ready that correctly. Someone who uses a wheelchair for mobility plays football, traditional football as I said earlier.

How?

It's quite simple. Danny focused on what he can do. He's able to hold a football perfectly fine. So, he holds the ball for extra points and kickoffs. He gets out of his wheelchair, holds the ball and then leaves the field until the next time he's needed. His parents commented that if he were to get tackled, it would be a highlight for him and joked that they don't need to worry about him getting paralyzed from a hit because he already is.

To me, this story is the perfect example of focusing on your capabilities, not your disabilities. It's not about what Danny can't do but about what he can. It's about inclusion. How can we include others? It's about accommodation, a very reasonable accommodation of a few extra minutes to get Danny's chair on and off the field before and after these few plays. What little things can we do to help others succeed, live their dreams or simply enjoy life more?

These questions aren't just rhetorical. They're a challenge for me to always seek this mindset with Teddy and others. How can I include Teddy? What little things will help him? (And, no, a giant ladder for him to climb is not the secret to success, although he might believe that.) What can I do for others? What can you do?

Just as these stories illustrate the importance of these Lauren and Danny focusing on what they can do, my challenge to you is the same―focus on what you can do.

I Know Different

We've settled into our usual routines with Teddy acting completely like his happy, goofy self. AJ ran right to Teddy and held him tight for a long hug when they first saw each other, and Teddy kept trying to put AJ's arms around him for more hugs at bedtime that night.

Another person who really missed Teddy was his friend Max, who he sits by on the bus ride home. Apparently Max asked about Teddy every day, asking whether Teddy would be back Monday for sure and then whether it was already Monday. Those two crack me up, and I'm happy they have each other for entertainment on the bus.

This is short because I wrote novels each day last week. Someone shared this poem by Tricia Proefrock, and each part of it rings so true to me. 

I KNOW DIFFERENT

Dear mommy,

I have felt your tears, falling on my face. Someone else might think they are tears of sadness, because of what I can't do...I KNOW DIFFERENT.

I know those tears pour from your heart out of gratitude for me, because of what I CAN do : I can love everyone in the purest form possible. Unconditionally. I can be judged, but will never judge in return. I know different because I feel, in your hugs and kisses, that I'm perfect just the way I am.

I have seen you hang your head down in shame, when we go out on adventures. Someone else might think you are ashamed of having a child like me...I KNOW DIFFERENT.

I know you are ashamed of the grown-ups who ignore me, yet talk happily to all the other children. The grown-ups who won't look you in the eye, but stare at me, when they think you don't see. I know different because I've seen the many, many more times you have raised your head up high, with pride, because I'm yours. : )

I have heard you whispering desperate prayers at night. Someone else might think you are asking God to make me a typical kid...I KNOW DIFFERENT.

I know you are thanking Him that I got to be here, with you, for another day- exactly how I am. I know different because I have heard you ask me never to leave you. And I have heard you cheer for me, every single day of my life- you tell me I don't need to be typical to be amazing, I just need to be here.

I know you have a big job, taking care of me. I know your body hurts, because I'm getting so big. I know that more than anything, you want to hear me say your name. And I know you worry that you aren't good enough, and that you will fail me...BUT I KNOW DIFFERENT MOMMY.

I know that even on your worst days, you will always be enough for me, and I will always love you more than you know. 

Gene Therapy

There was a segment on the Sunday Morning Show on CBS this weekend about using gene therapy to treat, or possibly cure, rare genetic disorders. It's absolutely amazing how far modern medicine has come that it's actually possible to remove a person's stem cells, replace the faulty gene and reintroduce the altered stem cells back into the body (via the HIV virus of all things! That part actually makes sense because it spreads throughout the entire body, and they modify the virus to ensure the person is not at risk of AIDS).

It's worth the 9 minutes of your time, so click here to watch it.

Of course, this particular treatment involved traveling to Italy for the clinical trial and returning twice a year for the trial follow-up. And it's absolutely worth it to keep your child safe from the disorder that robbed you of one of your daughters when she was 5 years old. Unfortunately, that clinical trial is no longer accepting new patients, and none are being done in the United States and may not for years to come.

This story makes me wonder if, one day, a similar therapy might be available to remove and replace the PIGN gene in children like Teddy with one that functions normally. Could it happen? Maybe. Could it give these children longer, more fulfilling lives? Maybe. Will it ever happen for Teddy? No, realistically it won't.

But that's OK. The disorder featured in this segment is one of, or similar to, the disorders we were actually warned about before we sequenced Teddy's DNA. We were told we might find out that he has this horrible childhood version of Parkinson's that has no cure and would rob him of every function before taking his life. I think that's part of the reason this story moved me so much, to see parents with fully functioning 2-year-old children lose their children in such a torturous way. Yet, the parents still found ways to move forward, to have a purpose in life. One of the families founded The Calliope Joy Foundation with the sole purpose of helping others with the same disorder that's taking their daughter from them.  What strength and grace!

Siblings

One of the first discussion points for us after Teddy's diagnosis was centered on AJ and what Teddy's diagnosis meant for him. It was easy to immediately jump to thoughts of guilt and worry that AJ wouldn't have a typical brother and that meant he would miss out on so much and shoulder responsibility that he shouldn't have to. Even during those first conversations, I tried to look for the positives of how Teddy's diagnosis would affect AJ.

This past week I had the opportunity to attend the Circles of Life conference and spent two days listening to speakers on a variety of topics from financial planning to advocacy for children with different needs. Overall, it was a really good conference, although I'll admit it was a bit difficult to be there and fully embrace the fact that I have a child with special needs. (That was actually one of the reasons why I wanted to attend.) I would have been much more comfortable attending to represent the non-profit service organization that is my employer, but my job was to be there as Teddy's mom.

I met some wonderful people, saw some amazingly cute kiddos and heard some pretty awesome stories. The final session included a guest panel of typical siblings who attended the conference with their families. These teenagers shared their thoughts on a few topics, including the hardest part of having a sibling with special needs:

• The stares. It's don't like it when other people make fun of my brother for who he is.
• It's hard not to have a sibling who understands you and who relates to you.
• I understand it's not favoritism, but it's hard when my sister needs all my parents' attention.

These teens confirmed every worst fear I have for AJ and Teddy. But they also reaffirmed my hope and belief that AJ will be a better person because Teddy is his brother. When asked about the best part of having a sibling with special needs, the answer was similar from everyone:

•  It makes me more understanding of others. I've learned not to judge other people because of how they look or act. I have more patience with people. I'm more accepting of other people. I'm a better person.

I also heard in their answers how fiercely protective they are of their siblings. Sure, they may not always like having a sibling with special needs, but they would be the first to stand up for them or their rights. These children were amazing, just like AJ will be.

Romans 12:12

One of the harder things when Teddy doesn't sleep at night, aside from losing much needed sleep, is all the time it gives me to ponder things. About a year ago, I was consumed with fear, anger, frustration and a feeling of complete helplessness after one of Teddy's seizures. I couldn't fall back asleep after Teddy finally succumbed to sleep, so I was searching for something: answers, peace, the ability to fall asleep ...

When I was a child, I read the Bible cover to cover, underlined favorite passages and jotted down lists of verses that resonated with me. That night I couldn't sleep, I looked up all the verses I had written down as a child until I got to Romans 12:12.

That was where I found what I was looking for: guidance, hope and a bit of peace.

"Let your hope keep you joyful, be patient in your troubles and pray at all times."

It's applicable to nearly every situation for me.

Worried about the future? Let my hope keep me joyful.

Beyond frustrated because Teddy is screaming not sleeping? Be patient in my troubles.

Fall while running and land in a bush? Pray to thank God I didn't land in a cactus. (True story. Happened in Zion National Park this month.)

Every time Teddy has a seizure that turns our world upside down all over again? All of the above.

"Let your hope keep you joyful, be patient in your troubles and pray at all times."