It's a tad late... :( But this is in Honor of his 13th Birthday
13. From Emma, "I love his laugh!! It makes me laugh."
12. He LOVES playing with little kids. I think he is jealous of them. ;)
11. He is a friend to all animals. Much to my dismay.
10. He plays the bass guitar, and acoustic guitar by ear.
9. He tells his friends not to say Retard. :)
8. He loves orange chicken.
7. He is kind, and caring, and sticks up for people.
6. We can’t find anything he ISN’T good at.
5. He is a loyal friend, and makes friends everywhere he goes.
4. He can laugh at himself.
3. His favorite color is pink.
2. He’s pretty much a stud.
1. Because he is OUR son, brother, cousin, nephew, grandson, and friend... and NOT YOURS!!! :) Well I guess for some of you... he is YOUR friend!! YAY!!! You are as lucky as me!!!!
#15. His rugged good looks. #14. He makes a mean Mac and Cheese #13. From Emma: He is BIG, and can swing me around and give me piggyback rides!! :) #12. He tries to see the good in everyone. #11. He can open jars. :) #10. He has an AMAZING memory. Which is good and bad... ;) #9. He is so sweet and kind. #8. He can eat a whole Little Caesars $5 pizza by himself. #7. He is very witty and makes us laugh. #6. He's very suave and charming. I wonder where he learned it from... :) #5. He loves "playing" halo with Jack. Mostly cuz he can beat him. haha #4. He has THE BIGGEST Heart!! And it's pretty tender, but don't tell him I told you that. #3. He LOVES Ice cream. I know, not very unique, but I still love that about him. :) #2. From Parker: He buys me food when he has money.... haha
THE NUMBER ONE REASON WE LOVE Nick: Because he is OUR son, brother, guy with black hair/cousin, nephew, grandson, and friend... and NOT YOURS!!! :) haha... cheesey, I know.
I have known 5 people in the last 2 months, who have passed away. I'm sorry, but that is too many. The first two, have been ill for many years, so there is no shock, only relief. The last three... Were WAY TOO YOUNG... and it's just not fair.
But I write this post to honor those friends in these peoples lives, who may not receive all the condolences the family gets. These are the people who selflessly give their time, and emotional energy to the grieving families, and act as anchor in the sea of sadness. Being an anchor, the stable force in the situation, makes it hard to mourn yourself. They are the ones asking for prayers for the family. The ones that continually worries about everyone but themselves. The one that is often overlooked as needing prayers too.
I want to say thank you to Jann, Joey and Suzi. Thank you for doing what I couldn't do. Thank you for being there, when I couldn't. Thank you for taking time and emotional energy away from your own families, when someone else needed you. I know you will be blessed beyond measure, and the souls who have gone to heaven are putting in a good word for you!!
To Jane, Kennadee and Shawn: You fought a good fight. Now you can rest and watch over us. May you Rest in Peace and play hard in Heaven!! :)
We love Clo-udy w/a chan ce o' Meet ba lls at our house. I write it like that so when it's googled my blog wont be listed.
Anyway we love it. Here's why I love it. It's all about being yourself, and how when you try too hard to impress people it usually backfires. It's a lesson to parents, to TRY to be interested in what you kids are doing, and TRY to communicate with them. It's a lesson for kids, to stop and THINK about what you are doing, and TRY to listen to the people who really care about you, NOT the person who is trying to get you to do bad things, even when they make them sound REALLY good. And to know that even if your parents don't say it the right way, they still love you and are proud of you. :)
Hadn't found all THAT had you? ;)
And here is a super cute video of Jack giving me a "Flintlockwood Kiss" You have to not lock away, and be prepared, it's only 3 seconds long. But do take note of Jack sweet grin at the end. He is so freakin cute. ;)
Jack's 4th birthday is coming up. While in a normal family this would be an exciting time, I can't help reflect on what almost was. I have said it before, that I forget. I'm not sure if its a defense mechanism or what. But when he is pinching me, or throwing a hissy fit because I won't get him cereal fast enough, or becoming limp and throwing himself on the floor when I need him to do something... I forget. Even when he is the sweetest little boy on the planet, and grabs my face with his tiny little hands to give me a kiss... I forget.
To catch up newcomers, when I was 27 weeks pregnant, Jack was diagnosed with Semi Lobar Holoprosencephaly. They told us he wouldn't live and gave us the option to terminate, twice. Looking back, it seems as if that time period was so short. The... "He's going to die" time period. So short, I forget.
But I don't want to forget. I mean, I do. But I can't.
When we first found out about everything, we SCOURED the internet looking for support. And did we ever find it! The first thing we found was the HPE Yahoo group. Our doctors gave us no hope he would survive. No hope he would be any kind of normal even if he did. But this amazing group of women, gave us HoPE. That is how we refer to it. Holoprosencephaly's acronym is HPE. So HoPE means something special. More than just hope. :)
I try to keep in touch with these sweet families. Every once in awhile I let one of these babies take a piece of my heart. The latest is Kara Faith. Her Mommy shared her with me(and others) daily, during a very difficult time and I am a better person for it. Now I want to share her with you.
Now the song. The song is so beautiful. I HAD to find out more about about it. The first thing I came across this video about sweet Audrey, who the song was written about. As I looked further into the song, I stumbled upon these videos telling the story of Audrey.
As I watch them, I feel like I am watching myself tell the same story. But as I watch it, it I am struck by just how much I have buried and forgotten. I was dumbfounded, how parallel our stories are. We too were first told he had Downs Syndrome. Then he had swelling on his brain, then a cleft lip... it just piled and piled. We too were told he would die in-utero, or only live a few hours. While we looked into funeral services, he had hiccups and was doing flips inside of me. We made a birth plan with two sides. One side if he lived, one side if he didn't.
But there is one GIANT difference. Jack, is fine. Jack is beautiful, and alive, and smells like a little boy. Were they wrong? Or was he healed? He wasn't supposed to live. He was supposed to leave us. But he didn't.
These two beautiful girls did. As I have prayed for and read about these families, I am struck once again with the overwhelming guilt that mine is fine. I don't even know if you can call it that. Can you call it, "The One Who Survived" Syndrome? I don't know.
Can someone explain to me... why I got to keep mine, and they didn't? I know, I know, God's Plan... Well sometimes... I think God's plan stinks. Why do babies die? Why do Mommy's get cancer and leave their babies? Why are people killed in car accidents? Why are some people healed and others are not?
Now, before you get all wacky on me... I am BEYOND grateful for my Jack. He has taught me so much. But he has brought me into a world, that some days, I wish I didn't know about. Sometimes I long for the days when I wasn't reminded on a daily basis, that babies die, or struggle everyday to live.
But... MORE times, I am SO thankful Jack came to us the way he did. I am so thankful to my Heavenly Father for having enough faith in me, to send Jack to us. For giving me a voice to to tell our story. I am truly honored and immeasurably blessed to live in the world that Jack brought us into.
About 13 years ago, I had an opportunity to be an extra on Touched by an Angel. It was very exciting. I was pregnant with Parker, and they were looking for pregnant moms to be part of a Birthing Class. I had heard the episode was about a couple struggling with the fact their unborn child had downs syndrome. At the time, I thought it was really cool.
Well today, I set out to find it online. And YAY!!!! I did!! Watching now, after all we went through with Jack, and the new world Jack brought us into... was so enlightning! It "touched" me then. But today, was like watching a whole different show. Wow... You will have to watch it when you get a minute. Ok 45. :) So great. I miss that show.
This is just my part. And you will be happy to know... I am pointing myself out to you, telling you when I'm on. In a very silly obnoxious manner of course ;)
Thought I'd give a little update. All is going well. It's been a struggle a few times. As in, he refuses to put it on. But all in all, he is doing great. He puts it on better for Dad, then for me. And I think Dad outs it on after he is asleep alot. But I am very pleased with how Jack is handling it.
Here a some cute pictures I got the first night I got to put it on him.
Jack thinks he looks like a vampire!! At least he doesnt sparkle in the sunlight. ;)
Isn't he just the cutset thing ever? I mean really...
From the side.
And then to top it off, some WAY cute video.
You don't have to say it. He IS THE CUTEST THING EVER!!!!!!!!!!
Jack got his braces yesterday. He was a little nervous about it. But in the end, he did great!
This morning I went into his class to tell them about his new braces, and why he has to wear them when he is so little. I explained about how he was born with a cleft lip, and showed them one of his baby pictures. One kid said, "That's gross!" I said, "No it's not! It's SO COOL!! Cuz see, they fixed it!" :) I could tell Jack felt really cool, and Rock Star ish. He showed them his "mask", and let them look at it, and pass it around. I think it went really well. I hope I spread a little awareness, even if they are 3. :)
So I have uploaded pictures, but they are in reverse order, and I'm too lazy to move them. :) So I'm making you do all the work- scroll to the bottom to see them in order! heehee
Sleeping like an angel... with a mask on. :)
The Crib. In. Showing off his head gear. He calls it a Mask.
Showing off how it looks "On".
Checking it out still...
Seeing if he can get it out. :)
Getting it in.
Here's the Crib.
He's so big, and yet so little! They really should make little kid dentist chairs. Maybe I should, and make my millions. mwuahahaha
Seriously... I need to stop freaking out so much. :)
Yesterday went SOOOO well! My LeAnn(the nurse over craniofacial) calmed me down quite a bit before our appointment. And then we met Parker.
I told you last post about how much I enjoy the camraderie. So as everyone was filing in, I was "looking" for it, but not in a stalker kind of way. ;) There were lots of people there, but noone stuck out to me, if that makes sence. And then Parker and his Mom came in.
Parker had the same kind of cleft Jack had, just on the other side. He had glasses just like Jack too. :) I started talking to his Mom. And then Parker. He was so cute. He's 9 and was telling us about his bone graft surgery a few years ago. He also has the same retainer/headgear Jack is getting. So he showed it to Jack and told him all about it. It was pretty cool, and exactly what I was "looking" for. And who amazing to be able to talk to a kid, and ask him questions. SO SO COOL!
So... here's the plan. The other day they took another mold for the retainer.
They are making it now, and it will be placed next week. From what I have been told, there will be 2 brackets cemented to his back molars, and then a wire around the back of his top teeth. In order to make room for the brackets, they put some spacers in to make room. Jack thinks they are pretty cool!! :)
When you are done admiring his cool green spacers. Take a moment to appreciate his palate.
This is how it looked after 2 years of wearing a prosthesis. Right before his hard palate repair.
Pretty amazing right?
So Jack seems excited about all this. He told Dad he was getting a mask! :)Here is a picture I found online of the headgear.
Jack's may be a little different. And he has requested blue, since that was the color of his new friend Parker's. ;)
So... I am feeling much more calm and prepared for this now. I have been told since it is a gradual process, he shouldn't have too much discomfort. For Jack... that means none!! Although, when she first put the spacers in, he got a little teary because it felt weird, and caused a little bit of pressure. But as soon as we got home he said, "My teeth feel better now, Mom."
Well, as of tomorrow, we are jumping back into the world of monthly appointments, and something to deal with Daily.
Jack is getting a retainer. He's 3. Ok... he'll be 4 soon enough. Crazy huh? Retainers are bad enough on a teenager. UGH
This retainer is to pull his midface out slowly. And by slowly... I mean 2 years. The thought process is to pull gently while he is still growing. Hopefully, this will help us avoid having to do it surgically when he is 8 or 9 years old.
I am feeling very anxious about this. I'm not really sure why. I feel very unprepared. I feel very overwhelmed with my life as it is, and now to add this. I know some of you are saying, add what? Well...
Making sure he is wearing it EVERY NIGHT.
Luckily... it is only an overnight, not an all day, retainer. This may not seem like a big deal, but I work most evenings, so this is out of my hands. I am not very good at giving up control, and having relying on someone else to do it. TO make sure he has it on before he goes to sleep. I can of course make sure it's on when I get home. But if he doesn't have it on, I can't really wake him up to put it on.
I am also worried he won't like it. That it will bother him, and it will be a fight. I'm so tired as it is, and to add fighting with a 4 yr old to improve his life does not sound appealing. Especially when there is daily fighting with others around me, to do things to impove their life. *sigh*
He has been wearing glasses since october-ish. And there are days, he doesn't wear them. Cuz they never got put on before we ran out the door to go to school. I haven't quite gotten the hang of the glasses yet. So to add another appliance to this kids life... ugh.
He will have monthly appointments to tighten it.
I think I will be able to coordinate his appointments with times I will be up there anyway, but not always. Up there, meaning the hospital, or in the area. For those who don't know, we live about 20 minutes from Primary Children's Medical Center. It is not far compared to some who go there, but I HATE to drive. And HATE to drive far even worse. I work a block and a half from my house, if that gives you any indication. :)
I will admit I like everyone in the ortho's office. I enjoyed when he was a baby, going there regularly. It will be fun to "hang out" with the girls regularly for awhile. :) Also, meeting other families going through stuff too. I enjoy the camaraderie of that whole aspect.
Also, I had braces. NOT FUN! I HATED getting them tightened. And this is his whole face, not just teeth. But then... this is Jack. This kid NEVER complains! It's weird. :) But... it is something I'm worried about.
Financially
Do you really need further explaination about this?
All that aside. This is something he REALLY REALLY needs. His sweet little face is soooo flat. It makes me kind of sad. It's always been flat, but the bigger he's gotten, the worse the flatness has gotten. The technical term is midface hypoplasia.
So whether I like it or not, we are in for the long haul. I can't wait to see the results! Should be interesting for sure!! :)
How bout some pictures?!
This is from the appointment where he was measured, xrayed and they took lots and lots of pictures. This one was taken at the end. So so sweet. They of course were highly impressed with his good nature. :)
Here is doing the mold. The nurse said she gets thrown-up on all the time. Of course Jack didn't even flinch. heehee
Here is Jack with his molds a few weeks later. He thought they were pretty cool.
These are just two pictures trying to show his sweet flat face. You can't really see it when he is looking at you: But look at the difference between my face and his.
I'm going to try and track the growth of his face. So be watching for that too!
There are days when I wonder if anyone else knows how I feel. And then something like this goes mainstream.
The part where her hands are shaking on the sink, makes me cry everytime I see it, or even think about it for that matter. It's a daily struggle, the balance of helping them, being their mom, and letting them learn it on their own. It's an emotional rollercoaster, being a Mom. Being a Mom of kids who are differently abled... Is like NEVER getting off said rollarcoaster!
