“You're off to Great Places! Today is your day! Your mountain is waiting, So... get on your way!” ~Dr. Seuss

A is for Adelaide and...

Achondroplasia

Stay Connected

Enter your Email:

Asking for a friend: Achondroplasia, This is a safe space

48 Comments 1

Parents waiting on the birth of their [possibly] diagnosed children seem to contact me in groups. One month I’ll have 5 people email me and then nothing for a few weeks, then the cycle begins again. Sometimes they are looking to vent, sometimes I respond and never hear back… sometimes we remain friends, exchanging cell phone numbers and talking into the night!
 
But the emails usually begin (or end) the same: I’m new to all of this. Please help me… I don’t mean…
This is a safe place to ask questions.
I want you to contact me and not feel ashamed or like you need to preface your concerns. I want you to know being human is normal. There. I said it: Normal. Human is to not know, to want to know. To ask.
 It's OK to ask what you do not know. It's OK to feel unsure. Click To Tweet
So tell me what you’re worries are! But before you do read on:
This is a private conversation. I do not judge. Addie was not diagnosed in utero, so I CANNOT ever tell you how I felt while waiting for her arrival because I didn’t have that option of knowing- nor can I truly say what I would have felt, because we cannot really know that about ourselves.  When Addie was diagnosed, she was almost 9 weeks. We were hospitalized for dehydration and unsure about why her head was enlarged. What was going on? When we received the diagnosis of Achondroplasia, we were relieved. I remember saying so she’s not dying? and our doctor wrapped me in a hug. I needed that hug. We’d lost a pregnancy before A came along, and the phrase “as long as she’s healthy” used to resonate with me. Now, I truly feel that as long as she’s (or he, if we ever have a boy) is here, then love. Just love.
 
Upon diagnosis, I too cried for hours… from the unknowns, from all the things that come up on the internet, that can tear down children and adults with dwarfism.
 I cried because so many humans lack humanity. Click To Tweet
 

But I digress. I wanted you to know, this is a safe space.

This is a safe place to ask questions.

So tell me what’s on your mind and how I can help! Things will get wild for a time… and then they won’t and then they may again. I am not a doctor (and most likely never will be), so I can’t give you medical advice, only personal anecdotes. I  cannot tell you what will happen in your soon-to-be baby’s life. I can’t even tell you what I’m having for lunch, because I’m not sure my brain can work that far in the future. I can tell you about how normal your life will become- how people will bestow I don’t know how you do it below Facebook updates and IRL conversations, and you’ll truly not understand what they mean. This is life and you can handle it… but some days you’ll know exactly what they mean. Because many days you’ll get it done and some days powering through 24 hours seems like an impossible feat.
 
Remember mama? She told you: there would be days like this.
 

So let me tell you about Lady A. Addie is your typical [almost] 4 year old… full of sass and sparkle, dirt and giggles. She bites her nails, no matter how many times I ask her to stop. She knows the words to some intense songs, and she feels all the feels when she sings them. She loves school and counting. Her favorites are “playing arts and crafts” and she strong-arms her daddy into reading no less than 3 books every night. She is an amazing big sister- loving, compassionate and concerned with her baby sister. She loves so wholly, sometimes when she wraps you in an embrace it feels like she could heal the world of all its hate and decay. She embodies everything innocence in a child is and refuses to let her experiences jade her. Because she’s also not average.

She’s had experiences that should, by all accounts, leave her wary and tired. She has a 3 inch incision scar on the back of her neck. She knows which doctors have done surgery on her and does her best to “not be sick” when we go for checkups. She listens to the techs when they tell her what to do and how to stand for xrays, “now be so still,” she reminds me. Her legs are bowed even more than the average child with achondroplasia. She gets called a baby and people love to tell me to “take her to the doctor, her head cannot be normal”. She has to climb to get many things that she wants- and we’ve always let her.

This is a safe place to ask questions.

If you’re already a parent to an AH (average height) child, there are things that will differ for you- no doubt. But so so much of life will be just as it always was… just with more babies to love. And if this child is going to be your first, you have the blessing of no expectations. No been there, done that in your mind. It’s all new, anyway! Give it a go, with all your heart and soul! You may do things differently from other new parents, but you also have a tight-knit group of thousands that many parents never find.

So, welcome to the Parents of Little People community. What questions do you have? How can I help?

With love and open arms,

Filed Under: Advocate, Community, Dwarfism, Family + Parenting Tagged With: , , , ,

Have you read these yet?

Email subscription form header
Right to your inbox so you never miss a post!
Name: 
Your email address:*
Please enter all required fields Click to hide
Correct invalid entries Click to hide
No spam, ever. Promise. Powered by FeedBlitz

Comments

  1. I think it’s a true testament to what kind of a person you are that you are willing to take time to help other parents in need who may not know where else to go. You amaze and inspire me <3

    Reply

  2. What a wonderful and heartfelt post. I think we should all be free to ask questions we were worried about something. And when you know somebody that has gone through it it’s always a good thing when they want to share the information to help you through it.

    Reply

  9. “It’s OK to ask what you do not know. It’s OK to feel unsure.” This is very true! It’s so amazing of you that you welcome questions, they must have seen a friend in you. I am so in love with your photo with Addie!

    Reply

  10. It is truly beautiful when you mother talks about her baby. This is indeed a great post for others who need support from other parents whose child has the same diagnoses. It is truly scary when you don’t have others to share your concerns with about the children. Thanks for sharing

    Reply

  11. What a powerful post, you’re awesome woman, you’re a wonder mom. These are very true, I feel it to my wife.

    Reply

  14. This is a wonderful post! This is a great post for those mothers that could use the support. It’s really great what you’re doing here. I’m sure a lot of mothers would really appreciate this post.

    Reply

  16. What a great picture of the 2 of you together! She sounds like an amazing girl, and your family is on an amazing journey! I love how you are opening your arms to those who have questions! It’s a pleasure meeting you!
    Cathy

    Reply

  21. Awwwww what a post!!!! You are so passionate about this and fight for it everyday! Good for you!

    Reply

  24. Such a wonderful post & a timely reminder that we must help each other. It is always great when you are really willing to spend some time to help another parent who feels helpless. Thanks for inspiring.

    Reply

Leave a Reply

Your email address will not be published. Required fields are marked *

CommentLuv badge

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Copyright © 2024 aisforadelaide.com. All Rights Reserved.  Track Santa

%d bloggers like this: