Thursday, July 31, 2008

My McDonald's Story

Last night we met some friends of ours, Mary and Justin, at McDonalds for dinner before heading to their brother's house to swim. You may remember that Mary and Justin are the parents of the beautiful Mr Riley and his wonderful big brother Rex.

So there we are enjoying our delicious and nutritious meal, when a lady comes up and starts shaking Ella's hand. Of course Ella is smiling at her and being her cute self. The lady says to me "Did you know Cathy McMorris?" I say yes, she is referring to Congresswoman Cathy McMorris-Rodgers who has a son Cole that has Down syndrome. The lady says "yeah, she had a Down syndrome. But HE is SUCH a doll!!!" I just stare at her speechless. Then she says something to Ella about having 2 teeth (which she really has 10 but whatever,) and walks away. As she walks out the door I say "yeah, she has 2 teeth just like you." The lady happened to be missing several teeth.

Okay, I'm sure she didn't hear me, though Chris was quick to point out that the door was still open. I am not usually an ugly person who spouts off mean things, but SERIOUSLY???? I was a little annoyed, okay a lot annoyed. First of all a mother does not have a Down syndrome, you have a CHILD who happens to have Down syndrome. People first language here people!!! Secondly, what is she implying??? That my Ella is not a doll, not the cutest thing on earth??? Perhaps I am biased but really Ella is a cutie and has the personality to go with the looks.


I don't know why I get annoyed by people's stupid comments. I am sure she meant nothing by it. I should have done the right thing and educated the lady right then, but I guess I still get shocked at what complete strangers will say to you. It's amazing to me. Really in the grand scheme of things it was not a particularly offensive comment, it just rubbed me the wrong way as so much does when in reference to Ella. I guess what bothers me is that Ella is singled out because of her Down syndrome. People always stopped and commented on Hunter when he was little, but it was because of his beautiful eyes or how well he speaks. And, there are many people out there that comment on how beautiful Ella is, but of course what stands out in my mind is always the DS stuff.

After the lady left McDonalds, my wonderfully hilarious friend Mary said that she always wishes she was quicker with her comebacks. She said that just once when someone mentioned something about Riley having Down syndrome she would like to pretend to be completely shocked and ask "WHAT??? He has Down syndrome?? How could the doctors have missed it all this time???" Boy, how funny would that be. Perhaps I will remember that next time someone says something stupid to me!!!

Tuesday, July 29, 2008

A poem

Just a quick post.... I read this poem on Renee's blog Life with My Special K's, on Mondays she does a thing she calls Monday Moments for Down Syndrome, where she posts a poem she has collected over the years. Anyhow, I really liked this one and wanted to post it on my blog. So, here you go.
Don't Pity Me By:
Joanne Green
Don't pity me
because my child was not born
"perfect", for in his imperfection I have
learned to see beauty that is deeper
than the flesh.
Don't pity me
because my child and I have faced challenges
that have served to forge
a bond much deeper than love.
Don't pity me,
because you could not have done this,
for I thought that too once,
before I learned that through love you can do
a great many things you once couldn't do.
Don't pity me,
my child is the greatest blessing to ever touch my life
I am rich to have him, and richer still for
the experience of knowing him.
And if you are truly my friend, t
hen you will understand.
And please,
Don't Pity Me.

Wednesday, July 23, 2008

Monday, July 21, 2008

What a week.

This past week was a crazy one for me. Last Sunday I went bike riding for the first time in at least 5 years. I rode 22 miles. In the last mile I crashed hard. It all happened in slow motion for me, when I first hit the pavement I thought I broke my back, then I tried to move and couldn't breathe, so I thought I broke a rib and punctured a lung. Then I sat up and got very nauseous. Then I started laughing hysterically. I was fine, some nice bruises and a bit of road rash, but perfectly fine! It really was fun, there is a 60 mile bike path here that follows the river and heads into Idaho. It was a beautiful day and we stopped and dipped our feet in the river, it was great.

Monday I was vacuuming. I was using the hose on it and somehow had the base lifted at an angle and ran over my toe. The beater bar grabbed my toenail and ripped it up. Fun.

Wednesday I took Ella to school then her and I headed to Walmart to do some grocery shopping. While walking around my toe started hurting, not the same toe with the mangled nail, the big toe on my right foot. So by that night my toe was swollen and hot. I had a crack on the bottom of my toe and it was definitely infected. Thursday morning I headed to Urgent Care because the entire night I was unable to sleep because of my throbbing toe, and oh yeah I don't have a physician here yet because I haven't needed one. The doctor takes one look at my toe and says " I think you have MRSA." WHAT??? People die from that. Seriously I'm going to die, or at the very least have my foot amputated because of a millimeter crack in my TOE??? For those of you unfamiliar, MRSA is a penicillin resistant staph infection, used to only be caught in hospitals, now apparently there is a community based strand, and apparently it lurks in the Spokane River. So, they drained my toe, so gross and painful, took a culture, gave me IV antibiotics, a shot of antibiotics, and a prescription for antibiotic pills to take home and also was told to come back for a check the next day.

Friday, I take Ella to school. Bring her back home then head off to Urgent Care. Hmm, doctor freaks out because now MRSA has spread into my calf!!! Two more shots and a prescription for more antibiotic pills, these to take every 4 hours on top of the others, and the promise that if when I come back the next day my calf is still swollen and hot that I will be put into the hospital. FABULOUS! So, now I am thinking great my LEG is going to be amputated because of a tiny cut on my toe.

Saturday, I go into Urgent care, prepared for the worst. But, thank God it was getting better. My cultures came back and it was indeed MRSA, but that the first antibiotic they prescribed me would take care of this strand. Anyhow, my toe feels better but looks nasty, but it's still attached to my body so that is a good thing.

Sunday, Chris and I loaded up the van with a ton of clothes that are too small for the kids, baby toys that no one plays with, and a double stroller that Hunter does not ride in and head off to Once Upon a Child to get some money for my used treasures. Get there, big note on door that says they are no longer accepting anything until their supplies go down. We drive around town searching for another place to sell our stuff, no such luck. We did have some fun though. I read in my Parents magazine about making tye-dye shirts so I thought that would be a fun project to do with Hunter. It was fun, and the shirts all turned out cute. We attempted some pictures today, but no one was in the mood for pics so I'll try again next time I can get us all in our tye-dye shirts

Thursday, July 17, 2008

I'm Expecting...

A new baby niece!!! My brother, Dustin and his beautiful wife Marie found out yesterday that they are having a girl!! I'm so very happy for them, they have been planning for a baby for quite some time. I talked to Marie on the phone yesterday and she shared with me her relief that the baby looked great on ultrasound. They had the Triple Screen done a few weeks ago and that too came back great. I have often wondered if they worry about having a child with a disability because of Ella. I know that Ella's type of Down syndrome is not hereditary, but I have to say I would be freaked out. Though quite a while back Marie told my mom that after knowing Ella she knew that they would be able to handle having a child with a disability. But still it's not something that women in their 20's are supposed to worry about, until it happens to someone you know, much less in your family.

My brother has always been great with kids, and it puts a smile on my face to picture him holding his new baby girl. They are going to be such great parents!!! When Ella was born they were both really concerned about her. My brother even came out to Texas when she was just a couple of weeks old, it was so sweet. Here are a few pics from that visit.


Monday, July 14, 2008

Ballerina Girl


Last night we were hanging out in my mom's room. My mom said something about how Ella was going to be her ballerina girl. ( She wanted me to be, but I was not girly and am still not!!) Anyhow my mom stood up and put her arms above her head, like a ballerina, and started twirling while singing the song ballerina girl. Ella immediately stood up and started copying her, she even put her short little arms up (they barely go above her head.) It was SO cute!! So of course today, I downloaded the song on ITunes, put Ella in her cute little tutu that Debbie and my dad got her and got out the camera. Of course she wasn't cooperating 100% but it's cute anyhow. I'm not really sure how to edit videos yet so you will have to suffer through the moments in between Ella's dancing, but it's all cute. Oh and in case you are wondering that would be a temporary tattoo on Ella's arm, I was putting some on Hunter and Ella kept rubbing her arm and pointing at his so she got one. Here you go.....




Thursday, July 10, 2008

The boy















I don't blog nearly enough about Hunter. I brag on Ella all the time because she works so hard but Hunter is just as incredible and he needs to be bragged on too!! He is hard to put into words, he is one of those kids that you just have to meet. He is so stinking smart it is not even funny, the kid wows me daily! He has an incredible memory, he has our address, phone numbers, license plates, his address from Texas, his Nana's new house address, he gives accurate directions (to Grandpa who always gets lost : ) He knows the state where all of his relatives live, and boy the kid has a ton of family, he is a whiz at puzzles, he is starting to read.....I could go on and on, the kid can remember anything.

Not only is he smart but he has the most wonderful personality! He is super funny, the most social child I have ever met (knows no strangers), also very sensitive, and an absolutely wonderful big brother. Of course you can just look at him and fall in love with him, he has such beautiful big blue eyes! At T-ball he is always a hit with the parents of his team and the opposing team! He even has his own fan club (and no it's not us.) He cheers on his team mates when they are up to bat, and anything the head coach wants yelled out she asks Hunter to tell the rest of the team. Hunter puts a smile on the face of everyone that meets him!!!

I've been on the search for a pre-k for Hunter to start in the fall. This is a hard thing. In Texas Hunter was in a preschool for 3 year olds in the public school system. SO, he went to actual school, with a real certified teacher. I do not want him to go to a daycare that says they do preschool. I am really liking the Montessori school for him!!!

Anyhow the shirt that he has on in these pictures are from his uncle Dustin. He got it two Christmas' ago (it was the smallest size Dustin could find.) It is from my brother and his wife's university, Kennesaw State University, in Georgia. It says Smart Cookie on it, which describes Hunter well!!!!

This is him doing a
"thinking" pose.












Being silly.













Pointing to Smart Cookie












This is his "player stance"

from T-ball.

Tuesday, July 8, 2008

Pics.....

We had a pretty good 4th of July weekend. On Thursday we took the kids to an indoor waterpark in Idaho and they had a blast, didn't take my camera though. That night when we got home I ended up having to take Hunter into the ER. Hunter had his 4 year old checkup on Tuesday (I know a little late but we didn't have insurance on his actual birthday.) Anyhow, he checked out good for the most part. He did fail his eye exam, although I'm not sure if he was fully cooperating, and his iron test came back low. He recieved his 4 year booster shots, two in each arm, no big deal. Well Thursday when we got to the waterpark it looked like he had a mosquito bite on his arm, by the time we were leaving it was the size of an egg, really hard, dark red, and really hot. Great. So I called his doctors when we got back in they tried to send us to an urgent care clinic but it was already closed so they sent us down to the ER. It went really quick. They said that they have seen this before, for some reason the 4 year old Tetanus booster can do this sometime, the doc said for whatever reason it is only the 4 year old booster that does this. But they treat it like it is infected just in case because it looks the same. So they gave us a script for antibiotics.
Friday we mostly just hung around the house, we attempted to go to the park downtown and were there for about an hour but it was hot and the kids were cranky so we headed home.
Saturday we drove around for 7 hours and looked for a new used car for Chris, he ended up getting a Dodge Neon. It was the only car we found with relatively low miles. Let me tell ya with gas the way it is there are a TON of trucks and SUV's out there, but not so many cars.
Sunday we were supposed to have a picnic at the park with our Down syndrome family network. Only my friend Mary and I showed up. So pathetic. Not the first time this has happened. So, we decided we would go to a different park, more fun for the older boys and Mary called a friend of hers and had them meet us out there. We officially have our own Down syndrome support group!!!! Here is Ella, Elliot and Riley























Here are a few more I took at the park.


Ella drinking out of her
baby doll's bottle.












Walking away from Grandpa.














Just being pretty.














Ella is so happy to be sitting by
her boyfriend Riley. He on the
otherhand is annoyed because
we moved him away from his
Goldfish crackers : )






Later that day we headed to Mary's (Riley's mom) house for a BBQ!! Thanks so much for having us over!! The older boys, Rex and Hunter, had a blast together and Hunter got to try the slip and slide for the first time.












Look at that beautiful little girl
peaking up at me.






















My best attempt at a group shot.











Hunter and Rex.










Oh the bubbles.

Thursday, July 3, 2008

Disclaimer on below post....

This is from Chris...



OK, looking at the most recent comments, I am fully aware that my post completely backfired on me. I wanted for people to learn from my mistakes. My MISTAKES, I screwed it all up. In hindsight I know what I should have done, I didn't do it and that is that. My goal was not for everyone to tell Kacey what a great husband I am; because truth be told, I am not. I messed up at almost every turn like I was following a checklist. I am not apoligizing for anything and I am not asking for forgiveness. Some wounds are just to big and we don't have enough time to fix them all.

A post from Chris

Here is something Chris wrote that he asked me to post on the blog it's a bit long but worth the read.....

Hello everyone, I have no idea what I am doing so I hope this comes out right. My name is Chris and I am the father of these two beautiful children you have been watching grow up. I wanted to write this letter for two reasons. First I want to tell you about the wonderful person who runs this blog, and second I wanted to give a fathers perspective of having a child with Down syndrome. Before I begin let me say that even though my gorgeous Ella Grace has it, I still know very little about it. My wife is the one that has done research for hours on end figuring out what tests and procedures need to be done. My wife Kacey has proven time and time again that she knows more than many of the doctors and specialists she has taken Ella to see. Kacey has more courage, compassion, and drive than anyone I know. She took the struggles and emotions associated with such a difficult time and put them, heart and soul, into her blog; which has become a support network and a point of inspiration for hundreds if not thousands of people. At first I did not understand the blogging thing as a whole, and I really did not understand why Kacey spent so many hours putting it together. She has read me some of the wonderful comments that you have all posted and I am truly amazed at what she has compiled to show off of our precious gifts. Now that I know how important it is for Kacey to help others, I am so thankful that she has had a way of channeling her thoughts.

Ok, on with the story.

I must make a disclaimer to anyone reading this looking for advice. I am nowhere close to being the next Dr Phil. If you do take anything away from this please let it be lessons learned from my mistakes. As you all know, we have two children, Hunter and Ella. Hunter was born while I was gone on a business trip, so I was a father for fifteen days before I was able to see him. It was scary for me. I didn’t know what I was doing. I didn’t realize how many things in our lives would change when a baby was introduced to the equation. I was naive and stupid; I thought why do we have to change anything, this is our house not his. Boy was I wrong. Before we could get adjusted, we moved from Montana to Texas when he was just a couple of months old. We lived in Wichita Falls, Texas which is a wonderful warm town, which is why it was incredibly hard to pull Kacey away. (Insert sarcasm here) We raised Hunter into a wonderful young man and had discussed briefly having another child. Ella came to us with out our prior approval. We definitely wanted to have more children, we just thought we would have planned it a little better (or planned it at all for that matter). So we began to plan for her arrival. Kacey took care of all the necessary doctors appointments and check-ups. Then one day Kacey called me in Code 3 crisis mode telling me to come home now. When I walked through the door, she was sobbing about how the triple screen said our baby had Down syndrome. I immediately thought, “What the hell is a triple screen.” But after I had her calmed down, we started to discuss our options and what this thing meant.

This is probably a perfect spot to describe my wife and I. I tend to look for the natural solutions in problems. If a problem is completely out of my control, I do not worry about it. She worries about everything. I told her that we wouldn’t do anything about it anyways so stop worrying. (Fathers this is one of those things you do not want to do.) For us there was no option other than to deal with it. In hindsight I should have been more concerned about my wife’s fears. I should have dropped the ideation that I am a leader, follow me and everything will be alright. (Everything will be alright, but try to understand the stresses involved.) I assured her that a 1 in 200 chance was the same as saying there was a 99.5% chance our baby did not have DS. So we went to a “specialist” in Dallas, TX, that assured us he did not find any flags or markers in Ella’s ultrasound to even remotely think she had DS. He even said “typical” kids can show markers in the ultrasound and not have DS. He said the only way to know for sure was an amnio test. I immediately thought, “What the hell is an amnio test.” But we did not have the test done because the odds of miscarriage was the same as her having DS. Which she had no markers for. So I said, “See nothing to worry about. Told you so.” Looking back on the whole thing I am so happy he did not find any markers, because Kacey would have been a mess the rest of her pregnancy. (Dads know this… tests suck.) The next couple of months were spent getting ready for the baby.

Change of plans again. Uncle Sam decided the birth of a child is overrated and wanted to send me to Iraq for a year, with three months of training before hand. I would have missed the birth of both of my children. Plus with the time frame, my “sunny beach vacation” would run up close to my separation date. Oh and did I mention I had to leave in two weeks? Our plan was to move Kacey and Hunter up to Alaska to be with her parents. This was Friday. On Wednesday as I was trying to get all of my processing paperwork done, Kacey called me and said she was having contractions and her doctor wanted her to go to the ER. Her doctor was adamant that she would not delivery Ella that day. (She was 6 weeks premature and they thought her weight was low.) We were in agreement that Ella should not come this early. We were packing a house and were not setup for a baby. But at eight that night, Kacey was rushed into an emergency C-section, Ella was coming with our permission or not. When she was born, she cried, it sounded very quiet like a kitten. Kacey and I cried. The whole process was 10 minutes tops. While they were putting Kacey back together, I was allowed to go into the NICU to see my daughter. She looked amazing. What a miracle, I cried again. The pediatric doctor came in and went to shake my hand. I was about to accept his congratulations when he flipped my palm up and started reading my palm. He muttered about me “not having it” and left. I later learned that he was checking me for a simian crease. He went to my wife’s beside with her doctor and told her they were going to test Ella for DS. They went over all the features that led them to believe she had it. Low set ears, the simian crease, boxed off toes, and some other things. Then they left without explaining anything. We were less than happy with our doctor’s care. They said the blood test would take a week, oh and she has a hole in her heart, see ya’ll in the morning. When I looked at Ella again in the NICU after the doctors suspicions, I knew that she had DS. She was so beautiful, sleeping in the cradle. She hadn’t even opened her eyes yet and I was wrapped around her finger. I did not tell Kacey my suspicions I just tried to reassure her that she looked like any other baby to me. (Fathers tread carefully with the information you provide a new mother, you are on your own with that decision.) Then the next day we went home. No instruction manual, no special instructions just have fun. My wife was constantly comparing her to pictures of Hunter as a newborn and his low set ears. Nope she doesn’t have it. Denial can be a powerful thing, but you can’t ignore it, you can’t change it, and you can’t trade places with your child. Oh and you didn’t do anything wrong. You were chosen for a very specific reason, and you might not know what that is. Anyways, so I argued and fought with the Air Force to get me out of my deployment. They didn’t care. I almost had to quit. (I don’t think you can quit the military, but I was going to try. I was not leaving my wingman.) They eventually sent someone else and relieved me of my trip. I tried to keep to normal activities to keep Kacey going. (To say she was a wreck is like describing a mountain as a pile of rocks.) When I say she was having a bad time, I mean it. (Dads she can not do it by herself and you should break your neck providing for her.) Things got better so I thought. We still had moments of panic from time to time, like when she couldn’t pass hearing tests, or when we had to call the ambulance twice, or the countless bouts with pneumonia or the croup. But we survived long enough to leave the Air Force and plant ourselves in Spokane, WA. Two days after we got here, Ella ended up in the hospital. (No it really doesn’t end) Then there were possible eye problems, and getting set up with new services. It is incredibly easy to get caught up in the problems, just remember to take the time to enjoy yourself along the way. Most of the time I left Kacey to deal with her issues by herself because I had no idea how to fix her. The logic behind my thinking was time heals all wounds, and it does if you have enough time. Some of us will not have enough time to heal. Some wounds are just too big. A child with special needs will drain you as a person and your relationships if you let them. The appointments and specialists and therapists will take its toll. Nurture your marriage more than your child. Trust me on this, your child will be alright, you might not be. It will be a hard long road but the benefits are well worth it. If you only focus on your child you will forget about the bond that created that very precious child in the first place. Don’t give up on each other and look out for yourselves. (Dads seriously check your ego; if you have problems you can’t fix, do not ignore them, and seek professional help.) Lead from the front and take care of your family… all of your family.

Our life’s journey has been tough at times but enjoyable throughout, and I wouldn’t change a thing. Remember in a hundred years it will not matter how much money you had, what kind of car you drove, or the size of the house you lived in; but the world will be a better place if you were important in the life of a child. I want to personally thank all of you for reading my wife’s blog. It is the stress relief that keeps her going and we love showing off our children for everyone that shows interest. She has done such an amazing job that I am in awe at her dedication, compassion, and enthusiasm. She inspires me as I know she inspires each of you.