Tuesday, December 9, 2014

The Lost, But Not Forgotten, Miracles

In January I wrote a post about happiness. I had made a list of all of the wonderful and spectacular things that had made me happy over the past 2 years. And then of course, me being me, I lost the list before I wrote the post. A few days after I wrote the post, I found the "List of Happiness." On that list there were some miracles involving Chris’ parents and my parents that I just could not leave out. Ones that I think about all the time. They are things that some people might not really notice or think these miracles are as big of a deal as they truly are. Miracles that are giant triumphs. I’ll go in the order I think I remember them happening.

James may or may not have been
The first one involves my dad. I want to say that this happened on the trip when James got diagnosed. One day my mom, James, and I were coming back to my parents ranch after running some errands. They live at the end of a small narrow road so that if two cars are coming from opposite directions one of the cars has to pull to the side (or it they’re small cars they just pull to the right so they have room to pass each other). As we’re driving down the road my dad happened to be leaving the ranch to run his own errands. My mom’s truck is bigger than my Dad's, so we pulled over. As my dad was driving by he stopped to talk to us. I don’t remember what my dad was saying but after he started to talk we all heard a little voice from the backseat. “Papa.” James couldn’t even see my dad. James only had four words at that time. He hadn’t even called me “Mommy” yet. But he heard my dad’s voice and knew it was his Papa.

No matter what, whether James looked at him or not, whether James even gave the slightest notion of his presence my dad has always ALWAYS talked to James like he is a real person. A person who matters and is worth talking to.

No matter what's in Jeff's lap - a game, an ipad, a remote - when
these two little people climb up, his lap is their lap, and that's
all that matters.
Next comes Chris’ dad Jeff. We were a couple months into therapy but James still didn’t really answer to his name or talk very much. On this day everyone happened to be on the main floor of the house (we live in the basement). James was in the big family room playing with some trains. Chris’ youngest brother had been really into trains when he was younger so they had a ton of Brio tracks and engines. Jeff and Chris’ brother played with James showing him how to put the track together and how the individual trains can stick together to make longer trains. While James was playing, Jeff walked into the kitchen from the garage and started to talk with everyone. You can see the kitchen from the family room but I don’t know if James was looking or if he just heard Jeff but James stood up, walked into the kitchen, sought out Jeff, grabbed his hand and guided Jeff into the family room and the trains so Jeff could play with him. Co-play, with his grandpa. A little boy who had very little eye contact in general went to find his grandpa so that they could play trains together. It was so wonderful, I cry every time I think about when James did this. I wouldn’t be too surprised if it happened now, but back then it was amazing.

The Farming Game for Kids. 

Grandma makes us happy
Around the same time my mom was visiting from Texas. My mom, my siblings that were around at the time, James, Lily and I were lounging around in the big room in the basement. Lily was coloring, James was sitting on my lap kind of coloring too (we had a book open on the floor in front of him). During a pause in the conversation my mom looks over at James and says, “James, what are you doing over there? Come over here and sit with me.” And he did. Got right up out of my lap went over to my mom and sat with her. We’re lucky and around that time we had been able to see at least one of my parents at least once every two months or sometimes once a month, but not enough for me to think that James would be able to remember who she is. But he did. He went right to her, without hesitation.

Gramma! Ger'off of me!  Ok fine, please stay. Stay forever.

Jeff and Lily at Hellfire
And last comes Robin. Chris’ parents, a couple of his brothers, and his sister had all gone out of town for a weekend and had taken Lily with them. This was the same weekend as our trip to Toys ‘R Us (scroll about halfway down and you’ll see the picture). When they got home Sunday night everyone came down to the basement to let us know that they were back and how everything went (they had gone to an event called Hellfire to shoot off model rockets). When Robin came down the stairs to talk to us James was across the room from her playing with the Kindle, there were about three people between him and Robin. James noticed her, put the kindle down, ran over to her, with his arms out, and spontaneously, without prompting, hugged her and said, “GRANDMA! GRANDMA! I MISSED YOU!” I’ve had trips where I’ve been away for days and came back and James had never said that he missed me, so this was huge, this was EPIC.

At a marching band competition. It was really cold that night and all James wanted was his Grandma.

So in love.
These four wonderful people who have helped and supported me and Chris, who have encouraged James, and shown Lily so much love need to know about these little things that happened that I think about all the time. Most people who read my blog know I don’t post very often but when I found my list and realized that I had left these moments out I wanted to post them right away.

Without “Mom” (Robin) and Grandpa Heuer, and without Grandma and Papa Grawe, James would not be this far. The day that James was diagnosed it seemed like my mom, Gramma in Texas, had read my mind. She told me that she would do everything in her power to make sure that we would be able to get James this therapy. To help us make sure that he would get the 40 hours a week that he needed, even if it meant her doing the therapy herself.

Lily is Robin's clone. You look at pictures of Robin when she
was little they look the same. And in some of their pictures
you have to wonder if Lily belongs to Robin or to me

We told Robin and she said that we know what we need to do. She called Steve (James ABA program director) and got the ball rolling. I don’t know where I was but Steve had sent us a list of supplies that we were going to need for our initial training, and I wouldn’t have had any of it if Robin hadn’t done it for me. We wouldn’t have therapists if Robin hadn’t been there.

More Jeff and Lily at Hellfire
Our dads, the silent but steady rocks, supporting our moms in all that they wanted to do for us, supporting me and Chris so that we didn’t crumble, and all the while being there to let James sit on their laps while they worked at their computers. Chris’ dad, Jeff, has a side business where he makes “Train Games” (they’re games where you start a railroad from the ground up, selling stocks and buying land and a ton of other things that I don’t understand). Jeff volunteered his workroom where he made those games so that James would have someplace to do therapy.

Papa and Lily working on the ranch.
My dad has never, for even one second, hesitated to help us find a way to pay for things, or given up his frequent flier miles so that me and Lily could come to Texas because I need a break, or volunteered the use of his car if Chris’ car dies. He’s the place where I can go and feel comfortable saying anything I want. Where I can go and watch football or talk about the future I’m scared that we might not have, and he won’t push for more and won’t judge me. Who tells me that he’s so proud of my husband and how he takes care of us.

I’m so very lucky. To not share these memories that I have, that these four have given me, wouldn’t be right. Chris and I wouldn’t be the people we are if it weren’t for our parents. All of my and Chris’ siblings, all 13 of them, who have also supported us in so many unspoken ways, wouldn’t be who they are if our parents weren’t the people they are.

Hopefully these happy memories, giant triumphs, and miracles, will help show how much it helps to have the people around you support you in any hard situation. Be it illness, cancer, developmental disability, or so many others. Hopefully  someone will be able to share how worth it it is to give up so much just to hear a little voice say “Papa.”


I have to stop now because I’m crying and I’ve run out of tissues. Thank you Mom and Dad and Jeff and Robin. Sorry I lost the list with your miracles on them. I promise that I didn’t forget them and I promise that I never will.

Another Update: Chris is now 29. We are nowhere near where we thought we'd be. We still don't see the light at the end of the tunnel but when we put our kids to bed at night, they're happy (well, most of the time). 

We have a GoFundMe Campaign set up for James' Therapy. Please visit and donate.