Family Pictures

I am pretty sure we can all agree that the event of taking family pictures is a dreaded one for good reason. It's so exciting to plan where you are going to take the pictures, what you are going to wear in those pictures, how your hair is going to done perfectly, what beautiful smiles each of your children will have as the camera shutter snaps. I am also pretty sure that we can all agree that nothing ever goes as we plan. The location that I picked was supposed to have an open dirt road leading right to the barn. The dirt road was NOT supposed to have a locked gate. The couch was supposed to be easily unloaded out of the truck right onto the concrete. It was NOT supposed to be hoisted over the locked gate and carried across the fields of goat's heads to the concrete. Cannon was supposed to get a good nap right until picture time so he'd be in his best mood. He was NOT supposed to scream hysterically, to the point that his face was red and splotchy. Ella was going to look her best in her tiered layered dress. She was NOT supposed to fall down the slide at the park and skin her chin. Well, Cannon screamed, Ella had a scraped chin and the fall air at sunset was colder than expected. By the end of the "session" Cannon was shivering from the cold. I remembered that with Menke's disease, patients have hypothermia problems and their bodies have a hard time regulating body temperature. How could we forget? Oh yeah- because we are still learning. Well, we hurried to the car and turned on the heat as we carried the couch back to the truck. When we got home, Cannon was still shivering so I swaddled him in two blankets and held him in the kitchen where the crock pot and the oven were on to try and warm him up. He finally stopped shivering and fell asleep. Now that picture taking has come and gone all we are hoping for is one good shot. Just one. Just one that is better than the only family shot we have- the photo booth picture. I think we did. Thanks, Erin for your patience. You were awesome! I owe you!

Let's Face(book) it!

Kent and I have been reading medical journals and publications, trying to find out all that we can about Menke's Disease. As you can imagine, these articles are to the point, factual and not very descriptive as to what the day-to-day life will be for a parent that has a child with Menke's disease. We want to know what to expect for Cannon as he lives with this condition. Last night, Kent and I were looking online when we happened to see a Menke's Facebook page. What?! There were some Menke's mommies on there and I requested a few friendships. I have already been accepted by a handful of them. I have learned stories of other boys just as amazing as my little Cannon anywhere from Canada to Knoxville to the UK. A single mom, a 17 year-old-mom, a mom with other children, a mom with her Menke's son as her only child. We are all different, but we have a common bond. I am happy to have stumbled across these people and I hope to continue to learn and gain courage from their examples . Some still are fighting their battles while others have lost theirs. I am already buoyed up, knowing that I am not alone. As I read what others are facing today, I am thankful that Cannon is home and healthy. My heart goes out to all the little boys with Menkes that are in the hospital tonight. Kent and I felt that there were no other people with a child like ours, but now we know there are lots of strong little boys that are fighting every day for those people that love them. I am glad that I have such an amazing support system including a loving husband, along with dear friends and family members. I am thankful for the guidance we are having as we take this journey with our little bubba.

Cannon's Physical Therapy

I'm torn about having Cannon do physical therapy. When he cries as if he's being tortured, I wonder if it is doing more harm than good? In the long run will it really make a difference? Then he has a session like this one and I know that any extra attention and stimulation he can have is a bonus to his quality of life. On the day I took these pictures, Cannon had a great morning, including one of his longest naps. The best time to interact with Cannon is when he first wakes up. When Miss Alison got there, he was still sleeping so we woke him up and he was very happy to play.

The two prior sessions were not very successful and the therapist had to leave early because Cannon starting crying so hard we could not console him. Last week the therapist showed up at our scheduled time which was only 30 minutes after Kent told me the lab results for the diagnosis. I couldn't find any tissues so I had been dabbing my face with toilet paper. As I answered the door, Alison knew that I was in no shape to continue with therapy. She graciously reassured me that we could just pick up the next week. As I came back into the room with Kent and Cannon, Kent looked at me with confusion and said, "What is on your face?!" I looked in the mirror and saw little tufts of toilet paper stuck to my face. Alison got more than she bargained for when she knocked on my door. Amidst all the sadness and heartbreak, Kent and I were able to get in a laugh- at my expense, course. I'm not going to lie, Cannon didn't last the full 45 minutes that he is scheduled for before he was just too tired. I am just glad that is endurance is lasting a little bit more each time and that he had at least a little bit of playtime.

10 Years of Learning

I'm getting smarter. Ten years ago I would've waited to see if Kent could figure out what I wanted as a gift from him. Five years ago I would've subtly hinted to Kent what I wanted as a gift from him. Even last year I would've heavily hinted to Kent what I wanted as a gift from him but I am getting smarter. Last night I found what I want him to give to me for our 10 year anniversary next month. I did not wait for him to stumble across this same item, I did not wait for him to wonder what to get me, I did not sit back and hope that by some miraculous intervention I would have this gift for my anniversary without having to tell him about it. No, my friends, I am getting smarter. I told him this is what I want for our anniversary. Kent is getting smarter too. He simply said, "OK , dear." Maybe not with the "dear" but you get the point. I asked him his credit card number and it is now in the mail. It is a beautiful chain with three (instead of just one, as shown) sterling silver pendants, each having one of my children's fingerprints on it. They send you a kit to make a fingerprint, for Cannon being so small we will use his big toe. I am so excited about this precious gift. It goes without being said why this is the perfect present for our 10 year anniversary.

Goodbye Grandma and Grandpa!

Tucking my little ones into bed felt a little.... different. After tubby time, I automatically thought that I needed to hand Cannon to grandma for his final snuggle of the day. I am not sad my parents are gone because they left us in a very good place; the house clean, the car cleaned, the laundry caught up, but I miss them. Ella picked out a shirt for school today and said, "This shirt smells like Grandma. I will wear it so I can remember her and not miss her." We are so blessed to have them so close (and yet still too far) and in a stage in their lives to be able to come up and pick us up off the floor when we are struggling. I didn't get my camera out nearly enough to catch my dad fixing the fence, hanging picture frames, changing the oil in my car, scooping up dog poop, sweeping the garage, and running the carpools all week. I didn't get the camera out to capture the many quiet moments my mom spent reading Halloween books to the kids, helping Ethan with homework, rocking Cannon in the rocker or stealing kisses throughout the day. I captured those moments in my mind and I am unspeakably grateful for their service in my life. Traditions are a big part of my family, including swedish twists and board games. I did remember to pull out my camera a couple of times. I love you Mom and Dad! We miss you already!

Primary Pumpkin Patch

Meet the Brother and Sister Cleghorn. They are one of the most genuine and generous couples you will ever know. This year they grew pumpkins in their yard and offered them to our primary kids for a fun primary activity.

We began with some Halloween story telling done mostly by the kids, but our sweet Bishop agreed to read one book as well.

After the stories were read, we let the families walk down the gravel path to the pumpkin patch for the picking!

Ethan picked a pumpkin he couldn't carry, so these two wonderful boys helped Ethan get his pumpkin to the car.

I don't know what was going on with Ella, but she was full of drama for this picture.

After the pumpkins were examined, judged, picked and put into their cars, we had a hot dog lunch complete with pumpkin cookies! While I was busy taking pictures, Kathy was busy serving lunch. We make a good team!

Near the end of the fun, the rain started to drizzle but it didn't scare too many people away. Instead they found their way to the beautiful covered wrap around porch and continued to laugh and build memories together.