Six to Eight Weeks? Try, Three Years.

On Sunday I was talking with my mom and reflecting back on our journey with Isaac, and it hit me that I have finally found my stride in this world of special needs. It has taken three years, almost four, actually, but here I am, more awake than ever. I've spent the last three years tired with my eyes half open. That's not to say I am bursting with energy, because I'm not, but I'm happier with the energy that I do have. 

When I was pregnant with Isabella, other parents used to tell me: Just give it six to eight weeks, and things will get better! Before she was born, I had no idea what they were talking about. Then she was born and, well, I was in the club and they were right, around eight weeks things got better and I found my footing as a new mom.

That wasn't the case with Isaac. At eight weeks we found out that instead of needing a laproscopic surgery that would require a very small incision into his skull and a very short surgery, he would need a full blown cranial vault reconstruction and orbital advancement which would require an incision going all the way from ear to ear, and would be a six to eight hour surgery...but actually ended up being a twelve hour surgery. Add to that the fact that he spent almost all of his waking hours screaming, or crying (I'm sure you know the difference if you're a parent). The screaming went on for over two years.

I feel like due to his medical history, I've bonded and re-bonded so many times over the past few years with Isaac, that I know him inside and out. I have probably grown to over-calculated his needs or responses to situations and I'm just beginning to loosen the reigns and give up a little bit of control at a time. Preschool has helped a lot. I know that I can leave him in a safe place and he will be able to manage just fine without me. But I am always so eager to pick him up from school because he has grown from a screamer, to a really funny little guy.

Maybe when special needs becomes a household word in your home, it takes three years, instead of six to eight weeks to find your ground. For the most part, we have our plan, we know what appointments are necessary and what goals need to be met. This morning as I was talking with a mom in the waiting room at Isaac's therapy appointment about friendship among children who have special needs, I shared that I worry about the future for Isaac and whether or not he will be accepted. I told her how much I love to see that his preschool classmates interact with him and get excited to see him join the class in the morning, but I don't know what that will look like in five or ten years. Conversations and topics like that, still bring strong emotions to the surface.

I never thought I would love to live in a bubble. But I love the safe bubble my home provides for me and for Isaac. In our house, I forget that he has developmental delays, and I forget that a three year old not using his mouth to eat is abnormal, and I forget that he's almost four and I'm still changing his diaper. Within these walls the differences aren't as apparent.

Last week, in pictures...

"When I grow up, I want to be an artist and make my masterpiece just like this. But I'll have to ask the director at the art museum if it's okay for me to make my masterpiece this way." 

"Isaac, we're birders, so we're going to look for birds."
"Okay, Beeda."
"Isaac, I have to go to the bathroom. Let me know if you see any birds!"
"Okay, Beeda!" 
...."See bird! Me see bird!"
"You saw a bird? I didn't get to the see the bird! I'll never see a bird!" and so begins the crying. 

If you're new to special needs, and you feel like you're drowning, it will get better. Maybe it will take only a few months for you, or maybe five years instead of three, but you'll find your ground. And I guarantee you will be stronger than you ever thought possible.

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.

-Sierra

Mr. Go Home

We are on vacation this week. The opportunity arose unexpectedly and thankfully, we were able to pull together friends and family to help take care of Stella and the chickens. 

Isaac has become increasingly attached to our home and his daily routine. He is a creature of habit and also pays close attention to detail. In his mind, everything has an order in which it should be completed and every group of toys has an order in which they all stand, and if, say, Walter, is not aware of this order, things get ugly. We encourage him to be flexible and talk him through many situations while stressing that, for example, if his toy on his high chair tray is moved out of its very important spot, life will go on. We try to be respectful of the order he has in his head while still easing him into flexibility. A couple of his therapists have asked if he has been diagnosed with OCD--he has not, and though many children with 9pminus do have OCD, we are hesitant to think of his habits at this point as anything other than his nature or related to his challenge with sensory processing disorder. We'll see how things play out over the next few years. 

We became aware of his attachment to our home, when his verbal capacity increased about six weeks ago to the point that he was able to say, "go home". Since then, if we are away from our house for too long, he does not tire of repeating, "go home" until we finally, go home. Knowing this, we were a little concerned about how he would respond to being away from our home for several days. He has done quite well, but we've heard the phrase, go home about three hundred times since we got to the lake house. We lovingly call him, Mr. Go Home.  

First sunflower to bloom

Our front garden space looks a bit like a jungle, but I like it that way. I'll never have a perfectly manicured lawn because that just isn't me. 

Doesn't he look so darn happy? This is quite a refreshing change from what is mood used to be.

Isaac is really interested in superheroes. He walks around saying, "Me a Hum". Somewhere along the way we discovered that his word for Superhero is, Hum (pronounced with a very guttural 'h'). We have no idea why, or how he came up with this, but we go with it and are glad we at least know what he is talking about.

Our superhero after a bath. Baths = torture for this superhero.

There is no doubt in my mind that Isaac will be extremely happy to arrive back at home, but for now, we are enjoying family time at a lake house on Lake Keuka in New York. Oddly enough, this is where I began my blog three years ago. At the time, we were in the midst of Isaac's hours and hours of relentless screaming, and we were also in the throes of determining what was ahead in regards to his craniosynostosis. I remember one night on that trip, when my dad strapped Isaac to his front in the Beco, and walked with him until he fell asleep. On Sunday, as we watched Isaac walk around the yard of the lake house, Walter said, "what a difference three years makes for this little man." Indeed, time, has made all the difference.