Letting Go of the Guilt

Let me start by saying that I HANDS DOWN have the greatest kid ever born (and let me say that I am aware that I completely biased, but I am still sticking with that statement as pure fact).

But I have some mom guilt going on here you guys, and frankly, I need to get it off my chest and then let it go. And that guilt centers around how hard of a time I had coping with the fact that Asher is a Little Person, and how many tears were shed, and how much time I spent hoping and wishing they were wrong and that at the next ultrasound I went to those little arms and legs would have just shot up and caught up to the "normal range".

And if I am being completely honest – what bothers me more than the guilt – is the complete and utter REGRET. I regret every day of my pregnancy that I spent upset, and worrying about Asher and his future. I regret not leaving the doctors office on the day that we found out that Asher was possibly going to be a Little Person and taking the time to celebrate the fact that we found out we were having a boy, instead of just mourning the fact that Asher was growing differently.

Now I know, I need to cut myself a break – we were worried about Asher’s health. We didn’t know if he had a type that would allow him to survive. We didn’t know if it was worse than what they were originally seeing (well that, and the specialist specifically told us it WAS worse…). But even after we felt assured that he was perfectly healthy – I still clung to the tiniest bit of hope that he would catch up.

So now that I feel like the worst mom in the world for ever having had any of those thoughts – I’m going to forgive myself, and hope that one day Asher will forgive me. After all, I had just found my way to Holland.

WELCOME TO HOLLAND

by Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy."

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that’s where I was supposed to go. That’s what I had planned."

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

So I have learned that how I felt was ok – the fact that I grieved was ok – the fact that I cried was ok. I was prepared for Italy – I really wanted to see Italy, and I am allowed to be sad that I did not get to experience all that Italy had to offer – but that does not mean for one second that I have not come to realize that Holland is the most beautiful place on the planet. Because from the moment Asher was born – from the exact second that I heard that first cry (his, not mine, because let’s be honest – there were tears, y’all), I knew God made no mistake – Asher was perfect. And not a single tear of sadness has been shed since.

That is not to say that tears have not been shed – because I cry WAY more than I would ever want to admit when I look at my child. I cry because of how beautiful he is – how happy he is – how smart he is – how perfect he is – and how unbelievably lucky I am that out of the entire world of women out there, I am the one who gets to be his mom.

Unnecessary Apologies

Unnecessary Apologies

There are a few things that get under my skin no matter how hard I try to not let it bother me. I’ve already discussed my issues with using the word "normal" to describe children or people without dwarfism when speaking about Asher – or making any insinuation that Asher is not normal. But this one bothers me even more – even though I know that the people who do it mean only the best. "I’m so sorry to hear about Asher’s dwarfism" (or some variation thereof) Apologize that Asher is sick and not feeling well. Apologize that Asher is…

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Pieces to the Puzzle

Pieces to the Puzzle

I have always loved doing jig saw puzzles. Not those little ones you can finish in an afternoon – but those giant ones that have thousands of pieces, and take weeks to finish (if you ever finish them at all – let’s be honest, they usually spent weeks taking up the entire dining room table until I need the table back for silly things, like dinner). These days though – I feel like our whole life is one giant jigsaw puzzle. And the puzzle pieces are more, and more abnormalities that each different doctor finds when they see Asher. We…

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The Dreaded Comparisons.

The Dreaded Comparisons.

In this picture, Asher is next to a family friend’s baby who is ten weeks younger than Asher. It is only when Asher is next to an average sized baby that his unique size and proportions are obvious. And while we make every effort not to compare Asher to other babies, it is hard some days to watch other babies that are Asher’s age (or quite a bit younger) sit up, hold their head up off the ground, some are even able to pull up and stand on their own. And believe me – I know, I know – all…

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The Missing Diagnosis.

The Missing Diagnosis.

We do not know what type of dwarfism Asher has yet, and part of the reason they are having such a hard time narrowing it down and getting a diagnosis is that he doesn’t have any distinguishing traits that typically present with the most common types of dwarfism. There are somewhere between 300-400 different types of skeletal dysplasia. Who knew, right? Achondroplasia is the most common type of skeletal dysplasia, and is the diagnosis for somewhere between 80 to 90% of all Little People (depending on who you ask). So once they rule out Achondroplasia, many of the doctors start…

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