Rolling With The Punches

If there is one thing people can tell you about me – it is that I’m a planner. I kid you not, at this moment I have a stack of 5 or 6 different planners sitting in front of me. I design and sell planner pages. I LOVE to plan.

If there is one thing people can tell you about kids – they could not give a single fudge in the world about your plans. If I gave Asher my planner and told him how I had mapped out the week, or shoot, the next five minutes – his response? He’d probably try to eat the planner.

So I have learned to roll with the punches when it comes to being a mom – especially a mom with a medically complex kiddo, who still does not have an official diagnosis for his type of skeletal dysplasia. There is no textbook case I can read that will tell me exactly what Asher’s development will be or should be, or exactly what issues he will have. But let’s face it – that is the case for all kids. The unexpected happens for all parents, the only difference is that I always expect the unexpected, since let’s face it – Asher has been the epitome of unexpected, in the most incredible way.

At Asher’s 12 month check up, I asked his pediatrician for a referral to an eye doctor. This was one of the only types of doctors that we hadn’t seen yet – and I know that the type of dwarfism they suspect Asher may have is commonly associated with both vision and hearing problems. Asher already had hearing aids, so I wanted them to check on his eyes and make sure there were no structural issues we needed to be aware of. Asher was showing no signs of vision problems, but his pediatrician (who has been a wonderful advocate and always trusts the mama gut feeling) gave me a referral anyway. The great news was that Asher did not show any signs of structural eye problems that we wanted to rule out – the unexpected was that he was indeed near-sighted and needed glasses. As always, the unsurprising unexpected.

So I’m not going to lie – at this point I’m wondering what super powers do these doctors think I have that I’m going to be able to keep both hearing aids and glasses on a 1 year old. His hearing aids turned into battery powered chew toys if I took my eyes off of him for one second. But I did my best for the next week and made sure he had both of them on throughout the day for as long as possible. I decided I’d ask his audiologist at the next hearing screening he had scheduled at the end of the following week if they had any tips or tricks.

It was at that hearing screening that I realized I wasn’t actually expecting the unexpected – I was always expecting and preparing myself for bad news. Because for the first time in a long time – I was truly caught off guard and surprised during a doctors appointment. Asher was showing no signs of hearing loss anymore! He passed his hearing test with flying colors, and was hearing all of the sounds within the normal hearing range. And that, I was not expecting. But I can certainly tell you that this Mama was excited – and learned her lesson. While children and adults with dwarfism often have hearing problems to some varying degree, there are a variety of causes that play into it. With Asher, their best guess at this stage is that his "hearing loss" was as a result of congestion that was so built up, likely caused to some degree by the fact that his ear canals are smaller than average, that it impeded the ability for the sounds to travel through – resulting in what appeared to be a mild degree of hearing loss. As summer rolled around, and his allergies cleared up some – the congestion dissipated and voila, normal hearing. This mama was oh so pleasantly SHOCKED.

I will always be prepared to roll with the punches – I will not be shocked and devastated if we get news that Asher has some sort of medical complication that we weren’t expecting or were previously unaware of, we will tackle it together and do everything we can to make sure he always feels capable of doing whatever he wants to do. But never again will I underestimate him, or convince myself that the complications will continue to grow – instead of possibly diminish.

Let’s Get Educated.

Let’s Get Educated.

My OBGYN gave us some very wise advice during that first appointment where she informed us that Asher’s bones were not growing at the rate they would expect – which was, stay off of Google. Being the rule follower that I am, I obviously went home and stayed off of Google for the remainder of my pregnancy and patiently waited for each follow up appointment for the doctors to educate me on what was happening with my baby. WRONG. There are still tire marks in the driveway of my doctor’s office that show how fast I ran home and jumped…

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RIP Stephen Hawking

RIP Stephen Hawking

Now that I have captured your attention with a blog post title that seemingly has absolutely nothing to do with being a mom or raising a child with dwarfism…let me continue. When I was pregnant with Asher – and we knew that he more than likely was going to have a form of skeletal dysplasia – my younger brother said something to me that really stuck with me. Being true to my brother’s form, he started out with some witty commentary on the extreme importance of height and brute strength – during the long gone days of the cavemen or…

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It Finally Happened

It Finally Happened

Hi Inevitable, nice to meet you. My name is Kristin. I knew this day would come. It was inevitable, after all. A stranger making a miserable failure of an attempt to whisper "That baby has a HUGE head". Ok ma’am – first off, we are sitting less than 2 feet in front of you. Maybe if your own head was a little bigger you would have the common sense to realize how sound travels in a very quiet room. Second off, what’s your point? Is my child’s head larger than average? Well since you are so intrigued, no. It isn’t.…

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The Pent Up Anger

The Pent Up Anger

Some days I sit around wondering if I can ask my doctor to write me a valid prescription for a chill-pill. So let’s talk logic: 1. I know that when someone comments on their own child, and their relief that they have a healthy child, that is not a direct stab at my child. 2. I know that when someone is excited about all of the things their child can do, and how big their child is getting, that is not a direct stab at my child. 3. I know that when I read things on the internet about people…

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