"The best and most beautiful things cannot be seen or touched-they must be felt with the heart." Hellen Keller

Thursday, October 28, 2010

Is this not the cutest kid you ever saw???? And rotten....oh, he smells he is so rotten! Seriously rotten!
This is what happens when you let a 13 month old help you carve pumpkins! He kept "tasting" the pumpkin. He does a lot of tasting lately. My mom sets up a "buffet" for him in the morning on our ottoman/coffee table thingy. She puts all sorts of snacks and cereals on it and he just chows down all morning. He has also decided that he likes tv. It sounds terrible, but boy am I glad for that! Come on....let's all be honest! When we need a small reprieve from a screaming child, what better to entertain him than some "Yo Gabba Gabba!" Just so you can tell the huge bridge that I have between my children...with Kory it was Barney and Blue's Clues and Power Rangers....with Riley it was the Wiggles (shoot me!) and now we are doing Yo, Yo Gabba Gabba and it turns out Blue's Clues is still on. And even more sad it turns out that I still remember all the songs! Yes, I am truly pathetic!
As for the hamburger pumpkin in the picture above...well here is the deal with that. Every year at Riley's school there is a pumpkin carving contest. This contest is HARD-CORE! I mean HARD-CORE! I would love to tell you that Riley and I have this meaningful and special time carving the pumpkin and we watch Halloween movies and eat popcorn balls. Here is the cold, hard truth....I start searching on the internet for months before October finding the perfect pumpkin...I do research to find the best options and then I greedily work on the pumpkin all by myself, forbiding Riley to touch it because he might mess it up. My mind is on the grand prize! I WANT to win at least ONE category in this contest before I die! I will! Two years ago I glued approximately seven full bags of candy corn to a carved pumpkin with a hot glue gun. It took me like five hours and an entire bottle of wine to finish it and we got "honorable mention". Honorable my butt! This year, with the hamburger pumpkin we got........NOTHING! In fact, someone else did the same pumpkin! Seriously! Someday, victory will be mine! Until then I guess I will let B help me carve my pumpkins and we will settle for a better year than last! :)

Tuesday, October 26, 2010

Try not to forget!

As of late, I am back in the blog-reading frenzy state that I often find myself in. I really do try to stop...I delete the link and then I find myself frantically searching for it again until I find it. I feel like I am abandoning these kids and their families if I quit reading their stories. I find myself excited to be back at work on Monday so I can read about what happened to them over the weekend. This weekend was quite a bummer for many of these families. I don't know how they do it! I know people often said the same of us a year ago, but the truth is...you do what you have to do for your children. You may not do it in a sane manner, or in the manner someone else might have pulled it off, but nevertheless, you keep trudging along, knowing that someday you will look back and say, "man, how did I do that??" I find myself asking myself the same question (yes I talk to myself often!) Somedays I just berate myself because after all that we have been through I get so irritated at Bryson for not sleeping at night. I mean really? Last year at this time I would have given ANYTHING to be up all night with my baby, if it meant being at HOME! I think sometimes we just forget how blessed we are....we forget how hard some people have it while we complain of trivial things. Sometimes I think it is good to have a reminder! So tonight when Bryson is screaming from his crib, I will remember that there is a mother in Dallas, Texas right now at Children's hospital who isn't even allowed to hold her baby, and I will walk to B's room and take his rotten, spoiled hiney in my room so he can play pillow peek-a-boo with his brother instead of sleeping away soundly in his crib. Sleep can wait!!!!
Enough of my soap box, sappy stuff, right?
The kids are so great! And even though this has been such a busy time in our lives, it is starting to wind down and there are some things I will truly miss. Football for Riley is over.....the kids did sooooo good! They got into the playoffs but lost to a team that was not only undefeated, but pretty much mowed over everyone they played. We lost 0-6 so we gave them a run for their money. The kids were so heartbroken and many cried. Riley's eyes were welled up full of tears and it sure tugged at my heart. We sure will miss the games! But so far I have NOT missed practice, at all. The wind was blowing like 60 miles an hour yesterday and I was SO GLAD that we didn't have practice!
Over the weekend I also got the opportunity to hear Kory's band play and they were really good! Kory is the youngest at 15, the others are 16, 17 and 22. They are really great kids! They play their first show this weekend and have been booked to play at a pretty big show here in Odessa in late November, early December. I am so proud of my boys!
Bryson is as silly as ever! I swear he couldn't be any cuter if he tried. He just wants someone to pay attention to him 24/7! Including nighttime!!!! He now runs and trot while holding on to the furniture. He refuses to let go! The pediatrician told me that is not a delay in his physical ability as much as it is just personality. I took him to the doctor yesterday because he had a big bruise and a knot under his chin. I swore I wouldn't be paranoid about the kid and really I have done well but all I could think was that they x-rayed him 7 million times and now he his growing cancer in his chin! I couldn't help it! Needless to say, it was nothing, just somewhere he hurt himself and nothing more. I took the day off to take him to the doctor and I so much enjoyed the time with just him while the other two were at school. He crawled all over me and giggled and played and we just kind of melted into each other. It was so nice! So far his only word is "no no" and he barks. So I guess you could say he is an argumentative dog! He loves animals and cars and sometimes I catch him attacking the cats. Usually he is super sweet and nice to animals but every once and a while he gets that little mischevious look at then you hear the cat yell and run. She doesn't have claws and every now and then when he won't leave her alone she slaps him in the head with her paw. The look on his face is priceless, he seems so shocked and then laughs. Silly, silly kid!
Looking forward to posting Halloween pics! I promise to post more pictures of these sweet, little munchkins!
Hope you all are well!
Love Amy

Tuesday, October 19, 2010

Courage does have a number!

Sorry for the lack of updates lately but MAN OH MAN have we been busy. Riley has football basically every single night. He has Wednesdays off and then Sunday is no game and no practice but all the other nights it is 6-8, or when it is too dark to see anymore. I have to say Bryson is not always the best baby when we have practice but that is a long time to sit in your stroller and he gets tired of his toys. Then Kory has his band practice throughout the week and on weekends and football games and in the midst of all of that, we have this little one year old that is into EVERYTHING! He loves to pull up and turn the tv off while we are watching it and he loves to tear up my magazines and take frames out of cabinets. OH MY, I had forgotten how hard it is having a baby! He is so sweet though! He is a perfect mixture of Kory and Riley's personalities. He has Kory's sweetness and he is mischevious like Riley. I laugh because when he is in a good mood he is sooooo sweet. He plays catch and wrestles with you and is just so much fun, but when he is in a bad mood (tired or teeth!) geez, he is awful! He just whines and whines and NOTHING makes him happy! He is giving the whole family a run for their money!
Speaking of money, my sweet friend Jo that I work with reminded me that she wanted to give me some money to start Bryson a savings account. I told her we would work on getting that done. She also reminded me that she tried to give me that same money last year when Bryson was sick. She said, "remember, you told me to keep it, that you might be needing it for a funeral." WOW! I usually just don't think about it much anymore, but I did say that. Pretty powerful! Now I am just buying him Halloween costumes and toys! I like that! He never wore his first Halloween costume because he was still naked tarzan in the hospital. It was a tootsie roll....this year he is going to be a sock monkey. It is soooo cute but I am figuring he will keep the hat on for about 2 seconds...he can't take the tail off though! I will get some great pictures.
Also, when I was at the hospital a few weekends ago nurse April gave me the paperwork to get Bryson his "beads of courage" for his hospital stay. I know I have told you all about it in previous posts but some of the things you get beads for are:
cath lab
PICC insertion and removal
CICU or ICU admission
dressing change
ambulance ride
sleepover at the hospital (needless to say he will be receiving a TON of these)
pokes (iv starts/blood draws) Again, tons of these too
x-rays (tons of these, still kind of worried about what kind of damage that may have caused!)
ng and chest tube insertions and removals (lots of these)
ventilator support (yea, TONS)
visits from PT or OT
cardiac surgery
and on and on
You even get a bead for a discharge from the hospital!
They also give beads for extraordinary experiences or special accomplishments
Well I put down for two of those beads....one for the first time I held Bryson and one for the day he went up on the 8th floor
Anyway, I have been working very hard to figure up the number of beads he is to get. I checked back with Caring Bridge posts and some from just memory and on and on and the total number of beads he is supposed to receive is.......DRUM ROLL PLEASE.........736!
WOW! Talk about courage! I have to figure out a really creative way to display them in my home so please any ideas are welcome!
Anyway, we are great and we hope you are all great too! I am sooooo loving fall, I am so excited for Halloween and Thanksgiving and Christmas! So many memories to create! Happy Fall!!!!

Tuesday, October 12, 2010

Crickets and Poo!

Oh what a weekend! Man oh man alive! It was PACKED full of stuff to do! We drug that poor, sweet baby all over hell and half of Georgia and he was sooooo good! Seriously! He was so good! We invited one of Kory's friends and Bryson spent the better part of the trip down staring at him as he sat in the seat next to him. Once he decided that Kaleb was his friend he politely proceeded to spend the rest of the weekend using Kalek as his slave. He persuaded Kaleb to play the "throw and pick up game" for close to four hours on the way there and on the way home. He talked to him non-stop, tried to touch him with his nasty cheetoh fingers. He made Kaleb feel right at home. I think Riley has figured out that riding in the backseat next to Bryson is not all it is cracked up to be and so he promptly volunteered to ride in the very back seat, behind Bryson. And Kory is just really good at tuning Bryson out.
We had the best time, lots of laughs and a little (alot) of poo but I will get to that story later.
We celebrated Kory's birthday while we were in Dallas as well and so we visited Pappadeux for dinner on Friday night. It was a long wait but the food was good. Bryson has decided that he REALLY likes to eat and so he is trying and taking just about everything we give him (explains the poo, I suppose).
Saturday we got up and went to spend the remainder of our donation money at Babies R Us. Bryson helped us pick things out. If he thought it was good for the kids at Children's he would grunt and yell accordingly. We picked out about four mobiles (those things are EXPENSIVE!) and several other things. I think in all our donations probably equaled around $1,000. I am so proud of everyone who gave for this occassion. It meant so much to us and so much to all those parents as well. They were very gratful to receive the donations, I understand they were running low so it felt good to help restock.
I was so glad to see April as soon as we got there! She asked if I wanted to go back to the unit and I agreed. She said that if I felt like I couldn't do it at any point I could just leave. The funny thing was that I didn't feel upset or scared, to be honest I felt nervous, very nervous, almost to the freaked out stage. I think I was talking very fast and acting nervous too and I didn't mean to but I hope I didn't seem strange to anyone. I guess I just felt out of my element. Someone described it to me as "surreal" and that is probably exactly what it was. It was like I had never been there. It was like all those things had happened to someone else. Very strange but not upsetting at all, which was nice. Any other time I would have craned my neck to see patients in rooms, just out of curiosity and concern, and I never once "saw" once patient. I didn't want to. Not sure why, God knows I read every blog of every sick kid in Texas, but I just didn't want to see it. I thought that I would recognize the smell, the beeping of the machines, the familiarity of it all. The only thing that I really noticed was how quiet it was. It was almost eerily quiet but it always was on Saturdays. We hated weekends because it was so quiet and time went by painfully slow on those weekends. It was quiet! I really enjoyed seeing everyone. I loved seeing all the nurses. April would walk up and kind of gesture towards us and they would look at us like, "I think I know them" and then it would hit them and they would say, "Oh my gosh! Bryson!" I know they probably recognized me more than they did him. They were all so thrilled with him and how chubby he was. He was so tired and seemed so very bored with all of our "oohing" and "aahhing". I am so glad he will NEVER remember! NEVER! We took a picture of him in his first room there. He was looking around like, "what in the world is all this stuff! I could tear this room up quick!" I think in all we bunked in 5 or 6 rooms out of the 18. We were in room eight longer than any room. As we passed room 8 I did see a grandma standing over the "display case" looking at her grandson. I didn't really look at the baby, I didn't really want to. I think I passed by that room pretty quick! Dr. Koch (Josh) came up to see Bryson too and it felt so good to hug him and for him to hold Bryson. Bryson went right to him and let him hold him. It probably helped that he found Josh's pen in his shirt and was eating it. We took pictures with everyone and visited for a little bit. Then they came and found Josh because they needed him for a problem. They came and got April too because someone's heart rate was really high. It just keeps moving, life just keeps moving! I set aside a specific gift for a blog I am reading about a little girl with hypoplastic left heart. I got to meet her parents and give them the gift. I felt rattled and weird. I didn't know what to say to them. It reminded me of all the times that people didn't know what to say to us either. It was strange being on the other end. It felt really good to be able to take those donations and to visit everyone. It was something I needed to heal and I feel like that has happened. It happened so slow at first when we came home, and then one day, I just realized that I hadn't thought about it for days, and then weeks and on and on. Healing takes time, it takes time for the joy to overtake the sadness but it is worth the wait!
April also gave us the paperwork to fill out for Bryson's "Beads of Courage". I think I have that program before. It was just starting when we left and so we got some beads but not many. A child gets a different bead for each thing they "encounter" while they are sick. There are many, many different beads for many different things. It is going to take me a while to fill out the paperwork and I think they are going to have to rent a UHaul to get all his beads here but HOW AWESOME is it going to be for him to see those beads when he gets older. He gets a bead for every blooddraw, for every overnight stay, for every xray, for every day intubated. It is going to be amazing! I am going to figure out some creative way to display the beads so that people can see them when they come in the house and ask what they are. He truly is courageous! And he deserves every, single bead!
Oh, I have to tell you the poo story and one more story as well. Bryson has decided, or shall I say "Bryson's body" has decided that if he smells food, he makes poo....every, single time so restaurant visits are more fun than ever. So we have breakfast at the downstairs lobby of our hotel and here comes the inevitable flared nostril and look of total concentration. Might I add that it is really hard to enjoy your food when you know for a fact that the person sitting next to you is taking a dump. It just tends to take away from the magic of the meal. We had already turned in our key so I decided that I would lay back my driver seat and change him there. I unlocked the car and just sat him in the seat. Within a matter of seconds he was on top of the dashboard. The child is like magic! So I figure I better work fast so I lay down the seat, fetch him and lay him down. He starts the fight. He sits back up and that is when I see it......when I laid him down on my seat I unknowingly forced all the fresh poo out of his diaper, up the back of his pants and all over my seat. I just kept screaming, "Oh no! Oh no!" Kory, Riley and Kaleb literally ran 1/2 a mile away on the other end of the parking lot. They had been inside the car only seconds earlier! My mom was laughing so hard I swear she peed herself! Needless to say for a full 15 seconds I was all on my own. I managed to wipe up as much poo out of my seat as possible but was now holding a dangling baby fully clothed with poo all up his back. I cleaned the poo off his back and pulled his pants off. From there the poo trailed all the way down the back of his legs, onto his feet. My mother finally got control of her laughter and managed to unhook the diaper and it fell, with a loud thud at our feet. I have NEVER seen that much poo! NEVER! It had to have been 10 pounds of poo. I am still holding a dangling Bryson and he is looking at me like I am absolutely crazy! We went through an entire box of wipes and had to go inside and ask for a trash bag to put all the wipes and diaper. We went back in and washed our hands in the hotel bathroom. I have NEVER wanted to bathe in a sink so bad in all my life. Bryson rode home with no pants and my car still smells like crap! So lovely!
And after the State Fair we talked Riley into eating a salted, dried cricket. He started gagging and his tongue came out 10 inches from his body I swear and there on his tongue were all the lovely cricket parts: wings, legs. His eyes watered the rest of the afternoon. THAT ONE made me laugh until I almost peed my pants!
Gotta love it!!!!!

Thursday, October 7, 2010

I don't want breakfast, I have a headache!

First, I will explain the frozen foods picture in a minute!
Secondly, don't turn me in for the naked guitar picture...I just couldn't resist!
I am sorry I haven't posted in a while but we are sooooo stinking busy! It is funny, the other day I was thinking, "Oh my gosh! Our lives are so crazy right now and it is driving me mad....and then I had the flashback, to a year ago today when I as going insane for so many other reasons...I smiled, knowing that this crazy is a great crazy, a fun crazy, a crazy I will someday miss and I smiled knowing that where we are today is so much better than where we were a year ago. I really do try not to think about what we went through, but sometimes I do, it is hard not to. I realized a few days ago that this time last year, Bryson had his chest open with his heart beating right before my eyes. It is so amazing! When I tell people those sorts of things, they look at me in total disbelief and I realize that if I were on the other side of that, I would do the same. I am in total disbelief of THIS CHILD! I promise you EVERY SINGLE DAY I stare at him in amazement of who is now. I do! I remember writing over a year ago about how I felt like I was in a nightmare that wasn't my own and I wished someone would pinch me so I could come back to reality. Now, I feel like I am dreaming but I pray every day that I never get that pinch. I enjoy that baby so much. I swear, I wouldn't care if he stayed just like he is right now forever! I hate to say I don't think I did that with my other children but he is soooo much fun! He is the BIGGEST clown! I don't know if it is because he is the baby and so rotten or just him but he has the BIGGEST personality ever! He is so smart and funny and I love watching the other kids interact with him. They love him so much! He is the blessing in my family that I never knew I needed! I cry as I type that because it just rocks me to my core, it truly does! Let me tell you about the things this kid does....and then I have to tell you about my other children (they are so neglected!:)) and then I have a really funny story to share so get comfortable people, I am not nearly done!
Bryson LOVES to play catch, with anything...balls...toys....socks....food! You name it he is throwing it but it is how he throws it that is so funny. He has a HECK of an arm and while I do think he is going to be left handed (thanks to my Mom and Mark, brainwashers!)he throws with both hands and I am not kidding, the kid throws far but about half of the time he just throws it straight up in the air and when it lands he just laughs and laughs. But when he throws he really concentrates and when he is done he looks at you with complete seriousness as if he is saying, "yea, I did that, what do you think about that?" and then it hits the ground and the laughter starts. He also likes to do monkey see, monkey do...anything we do he tries to copy. I picked up his "nightime" blanket and a bottle the other night and he said, "no, no!" I swear yesterday he shook his head at me! He has a "cage", it is a makeshift contraption all over the living room that kind of keeps him penned in to a large area. Well if the gate comes open, he is gone and he usually turns and shuts the door as if we won't catch him if he leaves no evidence and then he is down the hall and he is cracking up the entire time! I swear I have never seen a child crawl so fast in my life! He is really getting close to walking. He is cruising and even letting go and going in between things. It won't be long and then OH MY! I swear it truly takes a village to raise this one but it sure is fun!
Riley is still kicking butt and taking names in football. He LOVES it! He also LOVES school and he is doing so well. He has a few learning disabilities and we have really struggled with him in the past, but now, he doesn't need help on his homework or anything and his grades are great! I am so proud!
Kory is doing so great right now too. He, as always, has great grades but Pre-AP geometry is kicking his butt. He is such a good kid and so responsible. He is now in a band. He is the youngest, playing guitar of course and the others range in age from 22-16. I have met and gotten to know them all and they are great and they are so happy to have found him. He is really a good guitar player and he is so happy. He told me that this is the best thing that has ever happened to him. It just makes me feel so good to have such happy kids. I think that is all a mother needs to make her life complete, just happy kids. I feel so good where we are right now and I think I just enjoy it more because of where we have been. I NEVER thought that something like Bryson's illness could change my life so very dramatically, and in such a good way. Out of tragedy, comes such joy! I don't wish tragedy on anyone but I do wish that everyone could experience life like I do now. Talk about not sweating the small stuff, it justs feel so great!
Ok, so I had the crappiest day yesterday and I went to Target (nothing works like retail therapy for me!) and I passed the frozen foods section with the breakfast stuff and I see the condoms in the freezer. I laughed so hard and when I was checking out I told the lady and she was shocked and said, "really?" I said, "yes, I guess the sun isn't the only thing rising in the morning!" She laughed so hard and then she told a fellow employee to go remove the box and we look down there and several Target employees are over at the freezer section cracking up and taking pictures. It was too funny! Made me feel better about my day!
We are headed to Dallas this weekend! I am so very excited! I can't wait to give all of our things and mostly I can't wait to see the nurses! (April, if you are reading this be on the lookout for us!!!!) I just can't wait for them to see how different he is. Such a miracle! I will post lots of pics of all the donations and of Bryson with his "family". It is kind of weird, I am reading a blog right now of a little girl at Children's with heart problems and I can see her in my mind wearing the bows, or socks we bring, or watching a mobile we have provided floating over her head! Giving feels so very good! I hope we can do it every year!!!!!