August 10, 2008
The doubts are attacking, sometimes to a point where the tears come and I wake in the morning with a nauseous feeling. Then, today, I learned something about cow manure that has helped my worries.
Before talking more about that goopy, brown stinky stuff, let me talk about the last few days. We got started with our fundraising for Nick’s dog. The time-consuming task of putting this website together has made me realize how big of a job this is going to be. Now I’m second guessing if we should really do this.
The concerns tormenting me say that this is too much work, that no one will be interested, that we will never raise enough funds, and that all of our fundraising events will be a flop. These doubts are added to the tide of other worries that are flooding us right now. These are things like uncertainty of my dear husband John’s future career direction. Having left real estate and now doing contract work, he’s thinking about going back to school. We are concerned about the financial provision for that. My own work as a pediatric nurse holds uncertainty. The hospital I work at may possibly be doing layoffs. Thankfully I have enough seniority to keep my job. But, I could end up taking someone else’s in a different area of the hospital. Currently, hospital administrators have dissolved the unit I’ve worked on for 16 years. While holding down a “temporary” position on another unit, I am grieving the loss of my coworker group that has been broken up.
Then there is our “normal” life of autism that already gives us enough to do. This week the challenges have accelerated as I’ve tried to accomplish two tasks at once: get a website up on the computer and keep a constant eye on Nick. This supervision includes anything from keeping him from playing with the water faucet in the kitchen - usually accompanied by a good soaking of the kitchen counter – to cleaning up the hundreds of pictures from my photo boxes that Nick likes to dump out and look at. Being an opportunist, Nick usually finds something else to get into while I’m distracted with cleaning up his other messes.
Then there’s Joey, our other son. While not as busy as Nick, he has needs too. I also tend to think that people might be tired of hearing from us as we just asked for support to help send Joey on a recent missions trip to Peru.
The doubts pummel on and on. “Why add this to everything else?” I have been asking. “Maybe we should just forget about this dog for Nick. Our hands are full enough now without a fundraising project.”
I carried that weight into church this morning. I sat down to listen to a sermon on the verse of Proverbs 14:4 in the Bible: “Where there are no oxen, the manger is empty, but from the strength of an ox comes an abundant harvest.”
It sounded crazy to me. Certainly it had no application. It turns out it did. The writer of this verse was talking about the fear of failure, and how that fear inhibits taking risks. The first part of the verse, “Where there are no oxen, the manger is empty” says that there are no oxen eating from the manager. There are no animals in the barn. Without the animals, there are no messes. The manager and the barn are clean. And how easy is that. No animals means no mess.
However, the second part of the verse says, “but from the strength of an ox comes an abundant harvest.” The point? Without the oxen, the barn stays clean. However, there will be no harvest. With oxen, there is a harvest. Yes, it involves the trouble and work of having the animal, but that is part of the package in working towards an abundant harvest.
As our pastor put it, “No oxen on the farm means no mess in the barn.” No mess means there is less headache, worry, or fear of failure. No mess feels safe. No oxen means no risk. No risk yields no reward. Great risks yield great rewards. The main point: “Wise people understand the key to an abundant life is embracing the mess that accompanies the risk.”
We are dealing with messes that we have no control of, like Nick’s autism and the current changes going on in John and my careers. However, embracing the decision to get a service dog for Nick is a messy barn we have chosen. Is the mess in the barn worth it? Yes, the benefits this dog will provide for Nick are very worth it. And while we want the help that this dog will give Nick, there are other benefits that go far beyond the services a dog will provide for Nick.
That larger benefit has roots in a medical mission trip I took to Peru in 2003. This trip came weeks after I unloaded anger at God that I had carried for years. I told Him I hated Him for allowing Nick’s disability. It was a rather intense conversation and by the time I finished, it seemed my heart had undergone a rather radical change for the better in my faith. It seemed I had shifted from defining God’s goodness by the good things He should give me, to His goodness being in who HE is.
I still felt stunned from that conversation when I went on that missions trip. As the time to go got closer, my uncertainty about going grew. One reason was because I had been on the brink of turning my back on my faith just weeks before. The other was because I was dealing with the effects of Lyme Disease. But, something pushed me to go. I sensed there was something I needed to experience.
That experience hit me from a direction I wasn’t looking. It was on a visit to a slum in Peru. While talking with a family who lived there, a neighbor visited, bringing her 12 year old daughter with Down’s syndrome. The daughter had a brief attention span and within a minute was running off. Her mom chased after her. That girl acted just like Nick. And I could identify with her mom. I knew what it was like to chase after a hyperactive child. I was struck by the difficulties this mother had to be facing with her special needs child in such deplorable living conditions and lack of services.
I had another encounter with this girl during a clinic in which she reacted to an exam the same way Nick would. From that encounter, I realized that my next missions trip would be one involving kids with special needs.
I still hold on to that vision and may have a connection to go a camp overseas for kids with special needs. I’ve held back because practically, I’d be gone too long for the rest of the family to manage at home with Nick. With a service dog, both Nick and I could go. He could be a camper, and the service dog would make the transition of the trip much easier.
Aside from that, Nick’s autism has taught me many things about learning to find contentment in a life that I never wanted: the life of a special needs mom. Being out in public with a service dog will be a conversation starter. I’m hoping that some of those conversations will open the door to hope for others who are in the struggle of living a life they don’t want. It doesn’t have to be just a special needs child. Other things make people wish their lives had turned out differently.
And so for these things the mess in the barn is worth it. And learning that today has turned tears of worry into good tears.
Journal
A BOY WAITING FOR A SERVICE DOG
Monday, Oct. 13
I am learning that when it’s a down moment, I must catch myself so that I don’t fall too hard. When it’s an up moment, I must be careful that I don’t jump too high, but yet enjoy the jump.
This is a truth in life which has become exaggerated in our fundraising experience. There are the down moments of a sponsorship or donation not coming through for a cause that I logically am passionate for. These are best known as the “no’s.” There are feelings of stark fear that a fundraising event will flop. If we fell too hard after those, we wouldn’t be able to get up and try again. If we didn’t try again, then we would miss the amazing experiences that make us jump.
Stories of these amazing things are starting to roll in faster than we can keep up with. There is the story of a friend’s supervisor making a donation on behalf of his company after learning of our need. Knowing the value that a service dog has in the life of his wife, he wanted to help out. There is the story of our 5K fundraiser yesterday in which over 100 participants showed up. Three-fourths of them were people we don’t know before yesterday. It was a compelling moment where we wanted to sit down with each of them and hear their story, but it was impossible to do in the space of one morning. All we could do is give a general “thank you.” It’s a humbling experience.
There is the story of meeting another family from the Twin Cities at this 5K yesterday who has an autism assistance dog for their daughter. This is a valuable connection for us. There is the story of a phone message waiting for us when we got home from our 5K. It was a call from one of the participants asking if her daughter could help with Nick’s fundraising for a community service project for school.
There are stories of friends: friends who showed up yesterday who could have chosen to do something else; friends responding to our need and providing us with creative ideas without them realizing how helpful they are. There are stories of friends using their talents or business to help out. There is the story of Nick’s educational aide at school running to me every other morning when I drop Nick off at school with another donation check that she got from one of her friends. There’s the story of Nick’s educational aides from his school last year that still remember and care for him and come showing their support.
The list does not end here. These are just some examples.
We are learning that we just don’t know what lies around the corner: something that brings us closer to our goal, or a setback that may take us longer to get there. As I reflect on this heightened time of ups and downs, I can’t help but think of a funeral of a little boy that I attended about a month ago. I am a pediatric nurse and this little guy essentially lived on our hospital unit the last two years of his life. He was medically fragile, and he also had many of the same autistic tendencies that Nick does. This resemblance between him and my son was so strong that sometimes I called him by Nick’s name and I called Nick by his name.
At the funeral, the first song that was sung was the hymn, “On Christ the solid rock I stand, all other ground is sinking sand…” I could see in the expression of that boy’s mother that even in the midst of grief, she was fixed on that Solid Rock. It is an inspiring memory that teaches me to stay fixed on the center of my own faith, on Christ the solid rock where there is contentment regardless of the circumstances like fundraising gone well or not so well.
Perhaps the most important realization hit me last night as I was pondering all this: while getting the funds we need for Nick’s dog is an important thing, it’s not the most important thing. What I am learning through others reaching out and about my own faith in this journey is far more important.
That is an incredible place to be.
Autism 5K Fundraiser Photos
Friday, October 31st
I have a hard time knowing where to begin with this entry. What keeps coming to mind is a list that other moms of special needs kids and I put together this week in our "special moms" Bible study/support group. It was a list of the positives of having a child with special needs. This came after our list of the negatives, which helps us look at our situations honestly. I think we all found this list of positives edifying, and one of the things included this list was the privilege of seeing the good in others and God's work in them when they respond to the needs of our kids.
That's exactly what we are seeing right now. Today we got an update from 4 Paws on our fundraising totals. I am amazed to learn that we now are over halfway to our goal. It is impossible to make my feelings clear enough in writing as we process this. Getting to this point has only been made possible by the goodness in other people. What makes this experience so humbling is that we don't know all of the people. Other people we do know, but we don't know their contribution. And there are people whom we know their story and what they have given. We are touched by all of it. And so, the experience of this is so rich that there are moments like today where we open the email from 4 Paws, see the totals, and just cry.
It is indeed a postive thing to see the goodness and God in others. I can't believe I was fearful the risks (see August 10th) in this fundraising journey. If I had listened to the fears, I would not be seeing and learning what I am today,
