Monday, March 30, 2009

What's it like...


I was talking with a friend the other day and thought about a topic to write about on the blog. I know I get a few new parents who read the blog or come across it when they are searching for things, so I wanted to talk about what it is like to raise a child with dwarfism. I know there are also people out there who don't have a dwarf child, who might wonder too and that's okay! I know this is different for everyone, so I can only talk about my experience and state my opinions. Obviously I still have a lot to experience, since Kaela isn't quite 2 yet, but I do have some idea. I'm sure the dwarfism part is a bigger deal to some people and families then it is others, and people are going to have their own feelings about what's right and what's wrong for our children just as we do with our average sized children. For our family, the fact that Kaela was born a little person, really means very little. I worried a lot before she was born and right after she was born, but I feel like that was a natural grieving process in some ways. I was scared and I worried about her and things I should not have to worry about, but this was my baby. All I ever wanted was for my kids to be healthy and happy, and then I hear that my daughter is going to be born with a skeletal dysplasia and she will be very little. It turns out I have much more important things to worry about then Kaela being little, because there are a lot of complications that come along with her form of dwarfism, but still, for us, it's really a non issue. Don't get me wrong, I want the best for Kaela and that include the best health care and treatments. I take her to see an Orthopedic surgeon at least every 6 months to see how her spine is curving, check her neck to be sure it's stable, look at her bowed legs, we've seen physical therapist, occupational therapist, a physical medicine doctor, a pulmonary doctor, etc....our lives are different then they would have been had we had an average kid with no medical complications, but really, she's just a kid just like any other kid I would have had. Kaela does everything any almost 2 year old kid does other then walk. I think parents get scared sometimes thinking their lives are going to be so different and that their child's life is going to be so different. I'm not saying that in some ways it isn't going to be or that it isn't different, but I personally feel like it's as different as we make it. I want Will and Kaela to both grow up to be good, caring, smart people. I want them to know they can be whatever they want to be, they can do whatever they want to do. Obviously we all have our own limitations, but for us, Kaela can and will do just as much as William. I don't ever want Kaela to feel different around her family and friends. I want her to know that we love her, respect her, and support her and the same goes for Will.


I sometimes have people ask me if we'd have another kid not knowing which gene causes Metatropic. I don't really understand this question 100% unless you haven't met Kaela ;) I absolutely would and will (hopefully) have another child even knowing that their is a small chance we could pass this down. I adore my Kaela! Will adores his Kaela and Matt adores his Kaela! And our Kaela adores us! Kaela plays just like any other kid...well, maybe any kid that has an older brother. She likes to play with his cars and she likes to smack Will when she doesn't get her way...but hey, she's got to fight back and she does it well! She screams just like any other kid, she laughs, she climbs, she does it all! There is no stopping Kaela. Matt and I joke (I use that word lightly) that Kaela is going to be our problem child. We know she's going to be the one that brings out the grey hairs. She thinks she rules the house with her little index finger out telling everyone "NO!" Or "STOP" to anything SHE doesn't like. I know our kids might need an extra stool, or may need help with some things that other kids don't need help with but I think it just makes them stronger. I don't worry so much about Kaela going somewhere where she can't reach something or what not, because she's already found ways! Obviously I will do what I need to do to make sure she has what she needs in life, but she is one determined little girl! I walked into Will's room yesterday to find her sitting in the middle of Will's train table. Apparently when your arms aren't long enough to reach the middle of the table, you climb on top and sit on it! I just want people to know that our life is just like yours! We might have more doctor's appointments and we may have some extra hurdles, but it does not consume our lives. We really rarely even talk about Kaela's differences unless we have just been to an appointment or we are worried about something with her spine. Obviously we know it's there, but Kaela is Kaela. She is a little girl, a person, before she is anything else. I don't mind the questions people have, because that tells me you are interested enough to ask! If you say something that isn't okay, I'll let you know. I'm not scared to talk about Kaela. I LOVE my kids and would talk about them all day if you let me! I just want people to understand that we really are just the same as everyone else. My kids like to play and have fun just like any other kids. Kaela deserves to be treated just like any other kid her age. Even if you don't think she can do something, assume she can, because usually she can! She might do it in a different way then you and I, but she can do it! Yes, we will have to go through some things that the 'average' kid does not have to go through, but those things are not our everyday life. I do worry about her and Will both, and yes, I may have a day here and there where I worry more then I should, but I feel like that can happen with any child. Obviously I have some things I need to be more concerned with when it comes to Kaela, but I really don't want to ever make her feel any more different then she has to. I know when she steps out into the real world she will have to adjust to certain things too, but I truly believe that because we will raise her to be a strong person she will be fine. I also believe that in some ways this was the best thing that ever happened to us, because it's taught us so much in such a short time. It makes us better people. It educates us, and it's brought us into so many lives we never would have known.
The Kids love this Sit and Spin :)

Kaela on the train table showing off

This was taken at the natural history museum in Ann Arbor....And Kaela with her Bella

9 comments:

Destini said...

Great post! I love the pictures, both of the kiddos are soooooo adorable!

Katie said...

Well said Sarah! Our kid are just like everyone else, but in my opinion...a dose of extra cuteness! hehe I'll keep my fingers crossed thatyou get to bring another will or kaela into this world. They are truly adorable special children!

Danielle said...

Great post! I feel the same way! Peyton is great at telling us "no" and "stop" too. She rules the house lately!
I love the pic of Kaela sitting on the train table...that's awesome!

Kim said...

What a great post Sarah. I always say Preston has achon, he is not achon 100% there is more to him. I always say he has a form of dwarfism but I hate the term dwarf and not a huge fan of little person either. He is Preston. If someone asks, then ask. I am not a donator-I don't waer a t shirt advertising and maybe I look bitchy because I rarely get questions about his height although when someone asks his age and I say three, you see the wheels spinning.
Will and Kaela get more grown up in each post. They are beautiful kids. Wow though-Kaela is getting to look like such a little girl! Even though she will always be your baby!

Bobbi said...

What a beautiful post!!! Very well spoken, Sarah. You have beautiful kids!!! Hope to see you in Grand Rapids!!!

Mike said...

Oh - My - God - I cannot believe that is the same little girl that Caitlin played with in Detroit! She looks so grown up! Absolutely, bringing another little one that cute into the world is a great idea - although you won't catch us having a third one! LOL

Melissa Swartley said...

Great post!!! I love how she sits on the table! How true... Our kids always find a way to adapt.. Sonya's new way of getting around since her casting has been but scooting and it has slowly evolved into a hermit crab crawl! It works, she is speeding around again just in a different way! Oh so glad you mentioned not being afraid to talk about her too! So many people are curious and want to ask questions but I can feel their fear of asking, fearing that I'm afraid to talk about her! Never! I love talking about my kids! They are my life! Awesome post!!!

Greene Family said...

Great post, Sarah!! I feel the same way - Simon is the best thing that has ever happened to us, and since he has a form of dwarfism, we have learned so much in a short period of time and have met so many amazing people that we would not have otherwise known. Will and Kaela are absolutely adorable, and I hope you are able to have baby #3 soon!! Cute photos - I especially love the one of Kaela on the train table with her big smile - she is looking so grown up! I know what you mean too when you say to please ask - I could talk anyone's ear off about Simon! :)

Misty said...

i like how you say average :) i am glad you wrote that.. obviously i cannot understand what you guys go through and i am glad it isnt anymore stressful than with will :)
besides the obvious. i love you guys so much!!