Windy City and Wings

This past weekend my wife and I attended an awesome event in Chicago. The event was the 2nd annual F.A.S.T. Gala. The Gala is a fundraiser for "Foundation for Angelman Syndrome Therapeutics" aka F.A.ST.. The weekend started with the 2 of us getting up early Saturday morning (without waking up the girls) loading the truck with our suit-case and hitting the road. We were in Chicago by lunch time and had some spare time to take in the sights. We walked up and down Michigan avenue , watching the mass of humanity piling in and out of different stores.................."tis the season". There is nothing that says Christmas more than people banging into one another on the sidewalk ...........and the non stop honking of car horns. It is so much different in the big cities than it is here at home. Don't get me wrong , we have running water, the Internet , and even direct TV. It is just a little more slow paced here. The highlight of our little jaunt around town was watching Cindy's first experience with a street peddler. This guy walks up to me , squirts stuff on my boots, whips out a brush, and starts shining my shoes. I didn't ask for , nor wanted my shoes "shined". The funny part is when he tried to collect 12 bucks "plus a fine gratuity" as he put it, from Cindy. They went back in forth for a while, she reminded him over and over that I didn't want my shoes shined to start with, and that he just squirted the stuff on my shoes as we were walking by. He managed to walk away with 1 dollar....................he even mumbled something to me " I feel for you man , having an ole lady like dat". We laughed all the way back up Michigan avenue til we got back to our hotel. The Gala was so much fun. It is great to see other Angelman parents that we talk to online , or that we have met in the past. It also gave us a chance to meet some new parent . We were given the opportunity to go to Gala from the kindness and generosity of the actor and father Colin Farrell, who's son has Angelman syndrome. He donated several pairs of tickets, so many Angelman parents could attend the event. We were fortunate enough to be able to meet and thank him in person and spend a few minutes visiting with him. He was aware that we had adopted our 2"angels" , he also knew about Jamie, and our loss. The night was awesome!!!!!!!!!!! We laughed , visited, drank, danced, and sometimes cried. Paula Evans the chairperson of F.A.S.T. spoke at the event not just as the chairperson ,but also as a parent. She shared a story of some of her daughters classmates and how they came up with an idea to spread awareness about Angelman syndrome. The children decided that they and the entire school district would be completely silent during lunch hour on Dec. 2nd so that they would know how it felt to be like her daughter Ainsley. Most "Angels" cannot speak , her story was very powerful ......and there were not a lot of dry eyes after hearing such an awesome , inspiring , hopeful story. Cindy and are so thankful for being able to attend the event and share stories with so many other parents!!!!!!!!!! I will post pics of me playing the air guitar later

Please take the time to
Check out http://www.cureangelman.org/ and http://www.speakout4as.org/

Ladies and gentlemen ....Please rise, and gentlemen remove your hats

How awesome is that??!!! Enough said!!!!

Shh

It has been quite a while since I have had the chance to "sit down" and update my blog. Luke and I spent the night at my parents house....just goofing off watching t.v........before I knew it , it was really late and I was too tired to drive home. This morning I sit here with my cup of coffee a, and their house is SO quiet. I am not used to this much silence and calmness. Don't get me wrong I love my house and the life we have, but it usually isn't very quiet there. A normal Sunday at home consists of at least one t.v. on, Kayla barging in and out of rooms unannounced, Becca walking around with her little mp3 player changing the songs every 10-15 seconds, Luke and Maddie either playing and laughing very loudly or picking at each other just a little bit louder! Cindy is usually in the kitchen cooking up a storm to fill all of our bellies, the phone rings at least 2-3 times by 10 o'clock, the dogs need to be taken out and fed. These are sounds that I have come to expect and love, sometimes I wonder how does Cindy get anything done with all the distraction. I know it takes me half the morning just to get a few free minutes to check my e-mail. Down here at Mom and Dad's, the phone hasn't rang, the t.v.'s are all off, Luke is still asleep and except for the clicking of my computer keys when I type, the only thing you here is the very quiet ticking of mom's clock. It is very peaceful and relaxing to say the least. I think many peoples lives are that way. You get up go to work , hurry home and try to cram in as much time as you can with your kids and spouse before it is time to go to bed . the weekends are another "monster" all together. You have 24-48 hours to try to enjoy your family without the worries of work, your commute, getting everybody ready and off to school, running kids too and from practice, making dinner, helping with homework, making sure everyone is "clean" for the next school day, and then trying to get them all in bed asleep at a decent time. You add into that the extra care the little ones need with meds and changings and feedings............ It starts to sounds very draining and monotonous.....................................especially as I sit "here" in complete silence. Thank GOD I have such an awesome wife!!! Cindy does most of these things everyday with rarely a complaint. Now on the other hand I can't find my Harley keys and my shoes at the same time without it being a dilemma. Well , I here Luke getting up.........there goes the silence :0)

Wishes and Prayers

I had planned on writing this post about a week or so ago, but we got a little side tracked. I wanted to share Becca's "Wish". She was given a Make-a-wish trip to Hawaii. We flew out on the 4th for a fun filled 6 days in Oahu..................man that was a long flight. Most of the flight out was spent with Becca barfing on me. Now, one of my and Cindy's goals, is to have the girls experience as much as life has to offer. To tell you truth it is so much fun watching Becca see things for the first time. In Hawaii her eyes lit up like the sun when we walked down to the beach the first day. It was more like a sprint for her and I was just trying to keep up. She had such an awesome time!!!!!!! Her most favorite thing the whole week we were there was the luau. She sat in amazement and complete JOY watching the hula dancers and fire dancer. It was sad to see the night come to an end.............and the week for that matter. I am so glad her "wish" was granted. But, the story doesn't end there. After only being home for a week, and trying to get back to "Midwest" time, Becca was not feeling the best. She awoke Wednesday night during a really bad thunderstorm crying really loud. She was acting as if her tummy was really hurting her. Knowing that constipation is a problem that Becca and many Angelman kids struggle with. We gave her an enema in hopes that it would make her feel better.......and it did a little bit. The next morning she was still not herself and her tummy was very tender, so we decided to take her to the hospital. Many times we are overly paranoid when the girls aren't feeling themselves, but since they cannot tell you what is wrong with them you kinda just have to go with your mommy and daddy instincts. Thank goodness we did. By Thursday afternoon she had a ct scan that showed t=what they thought was a ruptured appendix, but they were not totally sure. Shortly after 11:00 that night she was being prepped for surgery. It was probably about 12:30 a.m. when the surgeon came out to tell us that her appendix was fine, but she had an obstruction in her small intestine that had perforated it. He told us he had to remove a portion of her small intestine and resection it and hoped that she would recover without the need of a colostomy bag.
All I could think was "Why does this stuff happen to us" and "What did Becca do to deserve this and the pain she had to endure, hasn't she been through enough in her life already" "Why, Why ,Why". Why does our faith have to be tested. Hasn't our family dealt with enough "crap"? I sat by her bedside and prayed to myself.........................to be honest I found myself saying some of the same prayer I did when I sat next to Jamie's bed almost three years ago. It makes hard to stay really positive and upbeat when you have a child in the recovery room, and you know had things can go horribly wrong very fast. As much as I could I tried to separate the past from the present, but it was hard under the circumstances, not knowing is she going to make a full recovery, is she going to have long lasting side effects from this, or is something else going to go wrong.....................? Slowly but surely Becca slowly came around and is recovering like a champ. We will have to keep a really close eye on her and she will be on a special diet of soft foods for a while, but the prognosis is good. Thank God!!!!! But, as overjoyed that I am that Becca is doing much better, a little part of me...the dad part in me wants to why my prayers for Becca were answered, but our prayers for Jamie were not? I didn't love her any less, I didn't pray for her any less. She didn't fill our hearts any less. I know these are questions that cannot be answered, but ....all I am left with is WHY?

Mother's Day

I just noticed that it has been a while since I had posted anything new. We have been so busy working on the house, putting in new windows , putting on new siding and remodeling the bathroom.....not to mention ball games and physical therapy for the girls. Well, that is enough excuses I suppose!! Mother's Day has come to mean a lot more to me in the past few years than ever. Before it was just a day to buy something for your Mom and grill some food for dinner. I see it a lot different now...............its a day to appreciate what moms do day in and day out. Now that I am an adult , I understand how hard it must have been for my mom having 4, yes count-em 4 boys only 8 years apart in age. I can only imagine the smells that permeated from our rooms when we were young adults.......I don't even want to think about the laundry :( I also see my wife as a women who wears way too many hats..1 she 's my wife and love of my life....2 she is an on the go mom for Luke and Maddie....3 she is a teacher, nurturer, nurse, therapist and advocate and a VOICE for Becca and Kayla. ...4 she is an errand runner....5 she is a housekeeper...6 she is a cook...7 she is the family accountant( no way am I getting near the bills with my Male Adult Onset A.D.D).8 she is a peacemaker when the older two aren't getting along..9 and she is now learning how to do "do it yourself" projects at home. She remodeled the bathroom, all the way down to cutting and installing the new tile floor and shower surround. 10 she is also my best friend. She does all these thing everyday without complaint ...................she rocks!!!!!!! I know so very few people that would be able to handle all that she does. I thank God everyday that she CHOSE me to share her life with.. I Love You Cindy... Happy Mother's Day..............................................................You too Mom!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

A Quarter 'Til "Boo"

You might find the title to this post a little puzzling. I often find myself saying it and thinking "Dude you are STRANGE". Let me explain, the girls get home from school right around 3:00. You can just about set your clock by it. I almost daily, call Cindy about 2:45 and let her know it is a quarter til' Boo. We have nicknames for the girls.......we call Kayla, "Kacky" .....and we call Becca "Boo". It is some thing to see, how the house totally changes when the two of them get home from school. It is the equivalent to being on a deserted island one minute, and the next thing you know, there is noise and banging and laughing and total pandemonium!!!! It takes about half an hour for the two of them to settle down, especially Becca, they are both so full of excitement when they get home. I feel there laughs and joy filling my heart more and more everyday. After the girls go to bed for the night , Cindy and I get just a little time to unwind and relax......Ha Ha Ha not really all that often, but I call that time when we do get it........Boo thirty!!!
God I love these girls, I can't even think of what life would be like without them, cause I know we were meant to have a life with them. AWESOME!!!!

What the kids can teach me :)

I am a pretty simple guy. I work my normal day, come home ,eat dinner, play with girls, and even sometimes go online to check my e-mail and update my blog. Now , I am not what you call " technically inclined" when it comes to the new gizmo's and gadgets that are available these days. In fact my old cell phone wouldn't even let me send text messages. I am more of a hands on "let me figure out how it works" kinda guy. I can read blueprints, layout and build anything from a deck, to totally remodelling our bathroom, tearing out a wall between our kitchen and spare bedroom , to make a larger dining room. Most of the time I can figure out everything I need and know what it will look like completely finished......... before I even start. Yesterday was a huge eye opener to me................I bought a Blackberry Pearl flip. The "thing" barely made it home without being thrown out the window. I mean how many things does a person need to do on their phone anyway? I took me over an hour of going through a tutorial on how to use the "thing" to end up more confused than when I started. It probably wasn't the best idea to bridge the gap from my old phone with this one. Of course , in my frustration with not being able to figure it out ....Cindy says to me"Why don't you sit down and read the instruction manual so you don't get so irritated?"....................YA RIGHT!!!!!!!! I think to myself. Doesn't she know I don't need an instruction manual......I am a MAN, I will figure it out in SPITE of the instructions. An hour or so later Luke comes into the kitchen and asks if I need any help. Any help........from a 14 year old....YA RIGHT I think to myself...., but I thought to myself"What can it hurt". Within about 5 minutes he's rattling off all kinds of terms like SMS this and blue tooth that , and it turns out the "thing" has a camera in it. While Cindy wasn't watching he walked me through some of the basics of what I can do on the phone.............holy crap there is a lot of stuff in it!!!!!!! Today I felt like someone right out of MIT, I was sending texts, receiving texts, taking pictures, adding contacts ,.......I was on a FIRE!!!!!!, for me anyway. To be totally honest the "thing" is really cool, I can't wait to see what else it can do. It just goes to show that if I can join the 21st century "tech" wise...anyone can. Hopefully Luke can keep teaching me without charging for it.

Feeling just a little bit older

Each year comes and goes and I usually don't give much thought to getting a year older. I still feel young inside and out. I think I still look young for my age...heck I still get I.D.'d for a beer now and then. Today was like an enormous wake up call for me. No, I don't have any medical problems. I am not in need of any "little blue pills". All of my hair is still where it is supposed to be, on my head and not in my ears. It was if the world "slapped me in the face" and said HEY!!!! your getting OLD!! Today my son Lucas took the test and passed for his DRIVING PERMIT. I remember the day we first brought him home from the hospital..........he was so small.........time couldn't have gone by so fast, but it has. For years his biggest interests were watching Disney movies, playing video games, and hanging out with his dad. Now, his attention is on school, girls, and goofing off with his friends. To be truthful my nose gets a little out of joint sometimes with his life being filled with so many other things that don't include me, but I remember what it was like to be his age. Hanging out with your parents wasn't cool,and I don't think it ever will be at that age. Sure we still do a lot of stuff together....guy stuff. Today I took him driving for the first time, I thought I was going to DIE. In between correcting him and trying to hold back the yelling and laughing at the same time, I thought "Now I know why my parents wanted the other one to teach me to drive" It is Scary. I know it won't be long before he gets the hang of it, and he'll be wanting to drive everywhere. Cindy has decided that I will be the one that teaches him to drive, you notice I said Cindy decided....I was absent for that vote I guess. He is growing up so fast...........................he is turning into such an awesome young MAN.........I am so proud of him. Hopefully I survive this round and live long enough to be there in 2 years when it is Maddie's turn to learn to drive. I think I will be having one of those "votes" when Cindy is absent.

What if she hadn't asked?

I ask the question , because I look back on my life and what it has been like with Cindy. Shortly after graduating high school, I packed my bags and left Pennsylvania and came here to Iowa to just "hang out" with some of my uncles and help them build houses for the summer. Over the next year or so I traveled back and forth to visit my parents and friends in Pa., and coming back to a more laid back lifestyle in Iowa just goofing off and pounding nails. I met Cindy and a bunch of her friends when I was working part time here in town, and going to school at the local community college. As a group we would go out to bowl or shoot pool.....I even snuck a bunch of them into a "dive" bar in Des Moines that I went to with my uncles from time to time. One of those little wholes in the wall that had no intention on "I.D.ing" you, as long as you had cash to pay for your drinks and you didn't get rowdy. One day Cindy asked me "If I had an extra ticket to the Brooks and Dunn concert would you want to go?". I told ya sure sounds like fun. I didn't know at the time(stupid man) that she had not bought the tickets yet. Cindy is a very shy person , so I knew that it took a lot of guts for her to ask me. We had a blast......and were pretty much inseparable each day since. We spent so much time together , doing everything together. One day it just hit me that I knew I wanted to spend the rest of my life with her, I wanted to build a life with her, and to have a family with her. Well needless to say I am embracing everyday spending the rest of my life with her, and we are continuing everyday to make a life and to love one another. And, the family thing ....we've had some great times and some of the saddest times we will ever go through................................but the family remains stronger and bigger than ever. Now I sit here and think where would I be, and who would I have become....If she hadn't asked me to go to the concert. where would our lives have taken us? I know I wouldn't be half the man, husband,or father that I am today. It seems GOD puts us right where we need to be at the perfect time................................
OH and by the way Happy Valentines Day
Cindy
I Love You

I should be careful what I wish for!!!!!!

Cindy and I both know that children with disabilities will have limitations, and even the smallest milestone is a huge leap for them. I know that the girls will probably never speak many words , but my hopes are that they will learn alternative communication skills, like sign language or gesturing. We have our own "little" language here at home. We know what the girls are wanting , or what they are going to get into most of the time. But, I find myself wanting more for them all the time. Sometimes Kayla is trying her hardest to communicate with us (she hoots) , but sometimes it takes a while to know what she wants. With Becca , usually her eyes give her away on what she is up to!!! That girl can find trouble in a blink of an eye ;) Lately we have noticed a lot of higher cognitive ability with the girls. I am sure a lot of it has to do with sibling rivalry, and to get more attention the other. Becca is very hands on.............especially with other peoples hair. She likes to pull your hair , either to get your attention or to get a response. Oh boy does Kayla respond.....LOUDLY. The funny thing is Kayla sets Becca up to get in trouble. Cindy and I have both witnessed it many many times. She will walk over to Becca, bend over, and put her head in Becca's lap................kinda like dangling fresh bait in front of a hungry fish. Becca knows it is wrong ,but just can't stop herself from doing the deed. Right away Kayla will start yelling and run over to us like she is totally innocent in the whole matter. I have even seen her take Becca's hand and place it on her head..............it's like entrapment if you ask me. Becca on the other hand is not always the innocent little angel she thinks she is. Many of the "clashes" her and Kayla have are initiated by her:) Becca has had a pretty tough time with her seizures, and we have been doing everything possible to try to get them under control. A few months ago she had VNS device implanted to try and help control the severity and amount of seizures she has. Her one on one aid at school is awesome about keeping track of how many seizures and how long they are in a journal. Just yesterday Becca was being a little extra "crazy" at school ( pretty much swinging her arms at her Aid and laughing instead of listening.......typical Becca)........finally her Aid told her that if she can't be nice that she couldn't play, and turned her back halfway to Becca. That little turd "FAKED" a seizure...can you believe it. She threw her arms up like her normal seizure, but the difference this time was her eyes were totally focused on her Aid. Becca's eyes always stair off into space and sometimes wander kind of like "lazy eye" when she seizes. This time she was focused on her Aid the entire time, and even looked at the journal right after "FAKING". She knew that the Aid had to write down the seizure, and it just so happened that the Journal was in the bag on her wheelchair. Instead of taking her punishment she manipulated the situation so that her Aid had to come back and interact with her. What a little "schemer". I was so proud when Cindy told me the story !!!!!!!! I am in awe of both of the girls and how far they have come...........and I know I should be careful what I wish for , but I can't wait to see what the learn how to do next.

Just a quick trim.

Last night Cindy came up with fabulous idea that I take Becca to get a haircut. I thought "sure, that shouldn't be hard" and off we went. I couldn't have been more wrong!!! Trying to hold Becca in your lap, keeping her hands under control, and holding her head still was like trying to wrestle a four armed anaconda. She is so freakishly strong and persistent. Between myself and the hairstylist we DID manage to cut her hair. It is such a cute haircut, I think the lady called it a "BOB" or something............beats me. When we got back home Cindy was grinning from ear to ear, I think half of the smile was because Becca looked so adorable........the other half of the smile I know is because I looked totally worn out. I think I was set up!!!

Mr. MOM

Tonight, I was Mr. Mom. Cindy had an appointment, so I was responsible for picking up the kids from school to start off with. Not a problem ....didn't forget a single one of them. I also had to make dinner. That is a little harder than it sounds when you have to keep an eye on the kids at the same time. But, I managed to grill up some steaks, cook some mixed vegetables and somehow I was able to have all the food done at the same time. Don't ask me how I did it it was purely luck. I had to get Luke off to his conformation lesson and feed Maddie and Kayla. To my surprise I nailed it....I even included all the food groups....yahoo for me. I cleaned up all the mess, gave Kayla a bath and took out the dogs. Being a mom is much harder than most men will give their wives credit for doing. I am so thankful Cindy does this so effortlessly and without any complaints. She lets me do my "guy" stuff and is very supportive of it. I wish everyone could be so lucky to have a wife like mine. But, she's taken so you can't have her!!!!

No pain NO gain

Now that I have "eaten" my way through the holidays. I have come to the realization that I need some help in the "shape" department. I was able to look at some pictures of past Christmas's..........and I noticed that I was "growing" from year to year. Now I knew my pants were a little tighter lately , but I never had to worry about it before. Now I have to do something. Last week I joined a gym for the first time. Now let me tell you it was an eye opener. The next day every part of me hurt!!!! I thought all the years of chasing the kids around and being involved in the outdoors would keep me in shape. I was wrong!!!!! To be truthful , it felt good after the second day and I now "kinda" like going to the gym. I know I have to get back into shape, the girls aren't going to slow down at all, and I have to make sure that I stay as healthy as I can for their sake. I have gone every night since joining, either with Luke or Cindy. Cindy usually goes in the mornings after the kids are off to school if she has no other appointments. Luke and I have gone together for the past few nights ......it gives us a little "MAN" time together, Lord knows we need it sometimes!! We are seriously outnumbered at home. It also doesn't hurt to get him away from the t.v. and x-box for a while....................It is getting to be that time. I have to go get changed and go work out.....................and by the way ......the elliptical machines are pure EVIL :0) Oh well No pain No gain!!!