New families and support for them

Ever since we've started the blog we have received quite a few emails from families who have a child who was diagnosed with Metatropic Dysplasia as well as people who have been diagnosed themselves. This is one reason I continue (even though it can be months at times) blogging.
I know when Kaela was born, almost four years ago (which I seriously can't believe!), there was really nothing out there. I called the main office for LPA and was immediately told they knew a family in California who had a son with MD. I was very excited since MD is so rare and there was really NOTHING helpful on line about it. The lady told me she would talk to the other family and soon after I was in touch with a wonderful family. I had a new baby, news I didn't know what to do with, fears I didn't know how to deal with and was just so lost and scared. Talking to this mom gave me so much hope. She has continued to be a huge support for me. I am still so greatful to have found her and so greatful to have her to go to when I have questions.
I want everyone who reads this who has just been given this diagnosis to know there is hope and a good possibility that things will end up being okay. I know there are different levels of severity with MD, but know there is hope regardless of the diagnosis. There are many of us out there that are here to help in any way we can. I've met so many wonderful people and families having had Kaela that I feel like my life was really opened to a new world of new and wonderful things. I know it's hard to see at first because we are so focused on all the scary things we read and hear about that it's hard to see the light at the end of this dark and scary tunnel, but I promise it is there. And there are many others who will agree with this.
As a parent we want our children to enter this world healthy and happy and we don't really worry about anything else, but sometimes we get news that changes this and makes us question things we never even though about. It makes us ask questions that there are no answers to and wonder things that we have no control over. I personally think this is okay and a normal part of the coping and grieving process. I know we all deal with things differently, and I'm the first to admit I didn't do well at all. I panicked when I found out (while pregnant) that Kaela had some form of dwarfism, went home and sobbed on my bed for a very long time...to the point that I got sick. I was so sad and questioned what her future would be before I even met her! Then she was born which didn't go the way I had planned (home delivery, and NOT on purpose), so the bonding didn't happen instantly. We were taken to the hospital in an ambulance and Kaela was immediately taken to the NICU where she spent a few days, then was moved to a regular room for a few more days. I went home one day and wasn't sure I wanted to bring her home. I know this sounds horrible, and I don't tell people this usually because I don't want them to think I'm a horrible mother. I cried in my room and told Matt I don't want to bring her home. It wasn't because I didn't love her, but because I didn't know what was going to happen. I of course instantly looked on the internet after I was given the diagnosis, which was probably the worst thing to do. You're going to do it, no matter what I say, but it really isn't the best way to learn about your child. I spent more time with her at the hospital once she was moved to a new room and instantly fell in love. Nothing really mattered at that point. I couldn't leave her side again! I was still scared, I still cried and I still worried....but I knew she was mine and I had a job now that had a longer list than originally planned...but it was okay because she was beautiful and mine.
The first six months or so were the hardest because there were so many appointments, but things become routine. You get into and minus those extra appoitments, braces, learning what is good and not good, everything is the same. She had a big brother that loved her, she smiled just like my son had, she laughed, she cried, she ate....she was a baby, she was our baby....and we loved her...and we continue to love her. She didn't walk like every other kid and she talks about medical things that most kids her age have no idea about...but she's perfect!
You quickly learn that they are born with this, but it's in NO WAY who they are. They are our children, grandchildren,friends, sisters, brothers, nieces, nephews,neighbors..and they can and will do things you never thought they would do in ways you never knew someone could do them. They will amaze you, they will love you and they will be perfect regardless of the difficult things they may go through. They will teach you so much...including how to love more than you ever imagined you could love. Children do this in general I think...
Having gone through what we have in the last 4 years I can say we are a better family because of it. And not just Matt and I, but our son, our families and our friends...it opens our eyes to a new world of possibilities and a whole world of friendships we never would have had.
The families I've met through Kaela our like part of our family. They are there when we need them and they understand what we go through. You can find the Metatropic Dysplasia group on Facebook at:http://www.facebook.com/home.php?sk=group_215180254421 or search Metatropic Dysplasia around the world. It's been a wonderful resource and support group for so many families! The families and friends of families that are a part of this group are truly amazing people.
I just want families to know they are not alone and that it really will be okay. Kaela having this is just part of our life. We don't talk about it everyday, it doesn't change what we do. Kaela is a very happy, bossy, stubborn, loving, sweet, caring and determined little girl who will continue to make this world a better place, I'm sure of it!

family update

I owe all my friends, family and followers some updates. Our lives have seemed to be at full speed ahead the last several months, and I haven't made the time to update the blog the way I should have. I've received a few friendly reminders in the last few weeks too, so I better get to it :)

Most if not all of you know this already, but our baby boy is due in just a couple of months now. We are all so excited to meet him. William is so loving and already tells me how much he's going to help me with him. It's really quite sweet. He tells me when he's crying he will pick him up and hold him, help feed him and teach him things. I believe it too because he loves babies and he's just a very sweet kid. He really likes feeling the baby kick too. Kaela on the other hand does not want to waste any time putting her hand on my belly to feel the baby. She is very uninterested, but she says she's excited to help with the baby too. She said she'll feed him and teach him how to sleep. I told her I'm loving the idea of teaching him to sleep! She's my good sleeper too, so I am hoping she has some good tricks to teach him.

I'm starting to feel a little slower these days, so I'm really looking forward to the end of July when I will be induced. Everyone ask me why I'm being induced, or how I know this already, so in case you are wondering....I had Kaela on my bedroom floor and NOT on purpose. She is just very determined and was ready to enter the world, so she did....and not the way I would have liked to have had it happen. She was also about two weeks early, Will was a week early and quick for a first time labor, so to prevent any craziness this time, we are planning ahead. Lets hope it all works out the way it's supposed to this time (me in a hospital room being pumped with drugs).

William finished up pre school just last week. My oldest and sweetest little boy will be entering Kindergarten this fall and we are all so excited for him. He loved pre school so we are really looking forward to him starting Kindergarten and learning so much more! He's such a good kid and we are so proud of him. He starts Safety Town in a few weeks too which will be another fun and exciting thing for him to do.

Kaela is finishing up her first year of preschool this year. She has been in a program in the school this year where they've worked with her a lot to get her comfortable in the school, learning how to get around better on her own (walking, a lot with her walker), using the potty, learning to catch herself if she were to fall, etc. She has loved it and they have all loved her. Next year she will be moving up onto the pre school program Will was in this year and she's looking forward to making new friends there. It's me that is nervous :)
Kaela has had some recent issues with her spine and is scheduled to have an MRI to check things out in June. We are hoping for good news or we are going to have some big decisions to make regarding some major surgery. We know her spine/rod surgery is inevitable, we are just hoping we can wait as long as possible.
We saw Dr. Mackenzie from Dupont Children's Hospital in Delaware in April. He's very familiar with children with MD and we feel really lucky to have him to go to. We've made an initial visit to see him in mid September to see what he thinks of Kaela, her images, and to have a breathing test done. I've been a little emotional lately, which I'm really just blaming on my pregnancy hormones, but thinking about all this can be wearing. One of our friends with MD is having his surgery this summer and my heart really goes out to him and his family. His mother was the first person I ever spoke to after Kaela was born so she has been a huge support for me. I know this surgery is needed and will really help our children in the end, but it's still scary and draining just to think about. At least for me :) But we know he and all of our other friends, and Kaela of course, will all do great when they go through it! I'm so excited we will actually get to meet them this summer for the first time too!
Otherwise, Kaela and Will are doing great. They are so much fun and make us laugh all the time. I know Matt and I feel so lucky to have them both and really couldn't ask for better kids. We are so excited to add this little guy to our family. William and Kaela are such great friends and have so much fun together, it will be fun to see this little guy with the two of them.

Learning/Teaching Experience

This Friday Kaela and I have been invited by our very special friend, Haylee Seefeld, to visit her fifth grade class at Ann Arbor Christian School. They have been learning about different disabilities and would like us to come in to talk about Kaela and her form of dwarfism. Haylee is the daughter of my wonderful friend, Alisha, who also happens to live two doors down. They have been wonderful friends to us through a lot of our ups and downs with Kaela's health and we are so thankful to have such amazing people in our lives, so we are really excited to do this for Haylee and her class. Haylee and her class (including some of her friends we were lucky enough to meet this past summer) have prayed a lot for Kaela and we are so thankful for them. We know their prayers and well wishes have helped so much in her recovery from surgery and we are so excited to say thank you to all of them in person. I tell Alisha that I think our kids (hers and mine) are so lucky to be able to grow up around someone like Kaela who will teach us that the difference is only on the outside and I've seen it already. Haylee, being the awesome kid that she is, has sat and sketched out a plan for Kaela's future home where cupboards are lowered, microwaves pull out from a low spot, smaller vacuums, and so much more. She's ten and already has compassion and understanding for my three year old daughter that many adults do not have and for her, I'm forever grateful. Thanks Haylee for always including Kaela, for walking slowly so she can keep up with you and for helping her when she ask. We can't wait to show the rest of your class that although Kaela has some different needs both physically and medically and will be smaller than the rest of your classmates, she's just like any other kid. She has feelings, she has needs and she has dreams just like the rest of us. She's a person and deserves to be treated with respect and love just like any other person.