Sunday, September 22, 2013

Amazing? Yeah Right!

As I dropped Isabella off for a math program at the library, I struck up a conversation with another mom. Most conversations these days lead to schooling, and as usual, the conversation came around to the fact that we are homeschooling. This other mom told me that I must be an amazing person. I clearly gave her a very wrong and very sugar coated impression of myself. I should have found her later as I struggled to carry a load of parenting books out to my car.

I am not amazing. In addition to feeling compelled to read every parenting book ever written, I've had so many breakdowns this week that at times I've thought it would be better for my family if I just removed myself to a hotel for a few days. Actually, that sounds quite glorious. In fact, that sounds so amazing I need to stop thinking about it or I'm bound to drive to the nearest Marriott--they have such comfortable beds. 

Speaking of breakdowns, my mom called the day before my grandma was to come for a visit, and I instantly started crying. Mainly because I was tired. I cry when I'm tired. It seems to be my body's automatic response to exhaustion. Instead of sleeping, I cry and think about how tired I am--obviously, this is very productive. At the time of this phone conversation, I was also trying to prepare Isaac's room for my grandma's visit and Isaac was simultaneously unfolding each piece of his clothing and throwing it around his room--cleaning with children is pointless. My mom told me to stop cleaning. I decided to actually listen to her, and the next day I cleaned the kitchen while talking to my grandma, which made kitchen cleaning less painful. 

I am working to find a balance (if there is such a thing) between schooling, making healthy meals, Isaac's therapy, maintaining the house, carving out time for myself, etc, is challenging. All of these things are important to me otherwise, I wouldn't waste time struggling to find balance. I know this is a phase and we will soon discover the ebb and flow that best fits our family.

I am so thankful my grandma made the drive from Columbus to stay with us for a couple days. She managed to completely embarrassed me at the local grocery store where she insisted she needed to speak with the manager in order to offer praise for a "thoughtfully placed sidewalk" and introduced herself as, Super Duper Carol Cooper. I've been laughing about it ever since. Thanks for the laughs, grandma!

Friday, September 20, 2013

Hop Frog Pond

The show Little Bear is very popular in our house. In fact, it is proven to soothe adults and children, so I highly recommend taking twenty minutes out of your day to watch an episode. We affectionately named a pond in the Cuyahoga Valley National Park, "Hop Frog Pond" after a favorite Little Bear episode. Our latest visit to our special pond went well until Isabella decided she was exerting too much effort walking around the pond and had a full on meltdown. In case you've forgotten, it is very hard being six. Everything that involves body movement, causes sweat to pour out and elicits instant fatigue. In addition to that, brain activity is proving to be especially challenging. One way or another, we will all survive, and maybe watch a little extra Little Bear in the process.  

"It's all because of my mind--it's going crazy!" --Isabella

Monday, September 9, 2013

9p Minus Awareness Day

I am incredibly grateful to all of the people who read the last blog post and shared comments here, via e-mail, and on facebook. It is so touching to know that so many people are cheering for Isaac.

In honor of 9p minus Awareness Day (Today, 9/9/13)

I met someone a few weeks ago who'd heard something of our story with Isaac. She said, "I just feel so bad for you and everything you've been through." Her statement struck me as odd and I quickly brushed it aside--maybe only because I'm in a vastly different place than I was over a year ago. I suppose I did want to hold a big old pity party on the day I read those bold letters that formed the words, MALE ABNORMALITY. The grief that took hold of my heart in the months that followed our meeting with the geneticist, just about did me in. Grief is a good thing--I don't believe anyone can truly find the beauty in the unexpected unless they grieve what is lost.

When the term, "9p minus", became a part of our lives, I had to grieve the loss of the son I'd planned for. The son I would teach to drive stick shift, the one with whom I would dance at his wedding, the one who would stand up for his big sister--those losses, and more, I had to grieve. When Isaac was placed on my chest for the very first time, and everyone said, "I'm sure the shape of his head was caused by a birth trauma", I knew that wasn't true. The moment I laid eyes on Isaac, I knew in my heart we were about to embark on a very different path. If you've been reading this blog for any length of time, you know that we did not have genetic testing done until Isaac was fifteen months of age. Initially, we were told by Isaac's neurosurgeon that the craniosynostosis was completely spontaneous and unrelated to any genetic abnormalities--later we found out he'd never heard of 9p minus, most people haven't. Our main concern after Isaac's birth, was to correct his skull, enabling proper brain growth. Eventually, other concerns regarding his development cropped up which ultimately led to genetic testing. After we waited over a year to find out what it was we were truly up against, I sometimes wondered why the chain of events hadn't happened differently. It didn't take me long to accept that God knew the entirety of information would be too much. One thing at a time, but always with that nagging feeling to seek out more doctors and seek out more solutions.

I've never been mad that we didn't learn about Isaac's genetics right after his birth. We had time to know him just as Isaac and not, this is my baby Isaac, and he's a little behind developmentally, but that's okay because he has a genetic abnormality. Don't worry, I'm not forgetting that he did have a head shaped like a triangle, so it was more like, this my baby, and well, you know those sutures across your skull...yeah, don't worry, I didn't know about them either...but anyway, one is fused and now they have to take part of his skull apart and piece it back together...kinda cool, right? Not. Anyway, I'm just trying to say that I do believe everything worked out just as it was supposed to.  

Since Isaac's diagnosis, I have heard similar stories. Parents have struggled, at times for many years, to get a proper diagnosis, only to find out that there is hardly any information regarding their child's abnormality because it is so rare. Oh the layers of frustration, sadness, grief, and loneliness. When I discovered the 9p minus Network, I was finally able to connect with parents sharing a similar story. Every single story I have heard is full of compassion, grief, perseverance, sadness, acceptance, and more than anything else, love. Love abounds and parents endure experiences they never imagined would be their own.

I never could have imagined loving a child with special needs. Until I was given Isaac, I never believed I could do it--yet here I am, feeling blessed in this journey.

With that said, today is 9p minus Awareness Day and I feel compelled to honor this day for Isaac and the four hundred other people (worldwide) who share a similar chromosomal abnormality. I write "similar" because really, no two are alike. Not only is Isaac's diagnosis extremely rare, but within the diagnosis of "9p minus" there is an array of developmental delays and health issues that may affect one person and not the other. 

The parent volunteers, and doctors associated with the 9p minus Network, continue to offer resources and information for families like ours. Our family is incredibly thankful for how they've raised awareness and connected one family to another so that we do not have to feel alone in our experiences. Though various health issues and developmental delays span from mild to severe, we are able to support each other because we hold a torch of never ending hope for our children to achieve more than any doctor or therapist laid out for them, and ultimately, to lead a life full of joy and acceptance. As a mother, I long for Isaac to be accepted. And when I still have my moments of grief, because trust me, I still do, my thoughts always turn to what his life is going to look like in ten, fifteen, twenty years, and what I can do now, to aide in him reaching his fullest potential--that is my daily fight, and like so many other parents, I refuse to give up.

If you'd told me a year ago, that Isaac would be running and holding his weight up on a bar at the playground, I wouldn't have believed you. A year ago, he could barely take ten steps on his own.

A year ago, he stood hunched over because of low muscle tone, now he stands tall, and proud.

I can't wait to see what he accomplishes over the next year.


Friday, September 6, 2013


Isaac's first day of preschool deserves a big long post, but I don't have it in me right now and I know family is eager to see pictures and hear something about his first day, so this is a quick drop-in of mostly pictures. This day was a culmination of all of our hard work and it was a day to enjoy the ways God has worked in Isaac's life in making this huge milestone possible. Isaac is attending the same preschool program that Isabella went to when she was four years old. We fell in love with their play-based preschool program and the care and compassion of the teachers, but because of Isaac's special needs, I thought I would only dream of him being able to participate in the same program. It really is a gift and an answer to prayer to have him walk into the very same classroom where Isabella made many fun preschool memories, and have Isaac welcomed with open arms. 

Isaac loves rockets so we were both excited when we found this book bag. I couldn't believe he wanted to wear it since he is very particular about what is touching him. He needed to hold on to his toothbrush, just in case something got stuck in his teeth--which would never happen.

Isabella: Isaac, are you excited to go to school today?
Isaac: Me?!
Isabella: Yeah, you're going to school!
Isaac: Oh! 
Isabella: I'm gonna cry. It's just so exciting that he's going to school.

"Sleep well, dear."
"You too. I just hope I can sleep."
"Are you nervous about dropping off our Little Man."
"Yeah, he's just so little and he doesn't have many words."
"Mmhmm, but he has a lot to say."

At the end of the two and a half hours, he ran out of the room happy and smiling. I couldn't have asked for a better first school experience for both of us. 

Tuesday, September 3, 2013


I'm not sure what the secret is to raising siblings who enjoy spending time together, but I do know, my parents got it right. I think I can speak for the three of us when I say that my siblings and I, genuinely enjoy our time together, and we genuinely miss each other when we are apart. Several  months ago, my sister moved to Texas. We are very excited for her and this new chapter in life, but we sure do miss her. And now, my brother is back at The Ohio State University, so here I am, wishing that we could be together for each and every Sunday dinner. 

It is expensive to fly to Texas. Especially for me to fly with two children who also require plane tickets, so I thought it would be Christmas before I'd see my sister again. I was elated to find out that she was flying home for a quick visit. And Isabella, well, I'm sure the pictures speak for themselves. She loves Jesse. They hardly separated from each other during her day and a half visit. The night we had to say good-bye, and the following day, there were many tears as I tried my best to console Isabella and assure her that soon we would get to see Jesse again. 

After Jesse moved to Texas, we started using Facetime, so that Isabella could practice reading aloud to Jesse. Isabella was very excited to read her latest story to her while snuggled together on the couch.

We went to the annual Art Show, where we discovered some very spoiled canines. I think people forgot that dogs were made to walk, they even have two extra legs, making them especially good at walking.

For real, this just isn't right. These aren't the only two dogs we saw being pushed/pulled around.

The following day was low-key. Jesse was back on a plane, and Isabella was sadder than ever. We are looking forward to Christmas and the chance to spend extra time with my sister.

This year I've learned that sunflowers may quite possibly be the happiest and saddest flowers all at the same time. Sure, they are bright yellow and turn their heads to welcome the sun, but they can't quite keep their heads up and then they become melancholy sunflowers. I'm ripping them out this week because they're depressing me. Now the chickens get to enjoy them.

This is a big week for us. Isaac will begin preschool on Thursday and some of Isabella's extra-curricular activities begin this week too. We are also celebrating the first few eggs from our chickens, and Walter has expanded their run because he thought they "looked bored".