Amundsen House of Chaos

Let's face it, when you have a kid who survived a stroke, life is always going to be a little chaotic.

Saturday, May 30, 2009

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There is a certain amount of loneliness that comes from being the parent of a brain injured child. Not having experience as the father of a brain injured child I can only comment on my own experience as the mother of one. As I sit here typing this on Colby's bed, he is screaming at me. He has been screaming at me all day. I don't know why.

I have changed the TV show, I have taken him outside, I put him in the swing and went for a walk, I have tried to play games, John tried to play a video game with him, I have given him Tylenol, ibuprofen and hydrocodone and he still screams. It is his mad scream. There is a difference. How do I know? Because I spend the most time with him. He has three. Mad, pain and sad. The only time today he hasn't been screaming is when we went to Wal-mart. He went to sleep. Usually he screams in there. I wouldn't have gone but I forgot to buy milk yesterday. The consequences of not having milk for Riley outweighed the potential for screaming in Wal-mart on a Saturday morning.

You might wonder why, if he's mad, would I give him hydrocodone and pain meds? Because sometimes and only sometimes they make him go to sleep and when he wakes up he doesn't remember that he was mad. Today it just made him more mad.

Why does this make me feel lonely? It doesn't really until I get a wonderful email from a mother of another brain injured child. She told me about a conference in Virginia or somewhere for mothers of brain injured children. Angel flights is even flying mothers to the conference. They are trying to get a hotel to donate rooms. It's only a Friday and Saturday. You would think I would be able to get away for a full 24 hours. You would be wrong.

This conference made me realize that the longest I have been away from Colby in the last 21 months is 9 hours. 9 hours out of 24. I certainly didn't go across the country in that amount of time. I went to a hotel to sleep while he was in the hospital. The army paid for the hotel we lived in for three months after he had his stroke. I don't think I would have made it if we hadn't had that outlet.

Anyway this email from an amazing woman (who is a constant inspiration to me even though we've only actually talked like 4 times) made me realize that I am the only one who knows when all of Colby's medications are given. I am the one who knows his crys. I am the one with the patience. I am the one who is the advocate and the caregiver. It is an exhausting job.

I have a wonderful husband. He is good at many things. I don't know that 24 hours alone with Colby is one of them though. They are to much alike. To stubborn and set in their ways. Yes I am talking about a 4 year old as well as a 36 year old. Colby is unbelievably set in his ways and routines. Just ask his preschool teachers.

So anyway the thought of not being able to go to this conference has made me feel a tad bit lonely. It is an isolating experience to go through the things we go through. I know that I have help. Earthly and Heavenly. I couldn't do this without either but at times it is hard to remember that it is there. Days like today are exhausting. It's only 7 o'clock at night and I feel like I've been up for 36 hours.

Anyway all of this brings me back to something I've been tossing around for over a year. I don't know how to get started on it. I'm lost but I know that somewhere out there is a way to help me do what I want to do. I've wanted to start a support website for parents of childhood stroke survivors for a long time. The ones that are out there seem a little to sterile and institutional. Not to mention most of them are for adult stroke survivors. They don't know what to do about a 4 year old who had a stroke. Other sites are devoted to this type of treatment or that type of treatment but none of them list different treatments and resources that are out there.

I am not a website designer. I don't know any website designers. If you are one and I don't know it sorry! I guess I've been a little preoccupied to pay attention to people's occupations. So I'm asking for help from anyone who might read this. If you know of someone who might be able to help me could you let me know or let them know. I have no money for this so I need someone who might be willing to donate their time and resources or at least wait for payment. I know it's a long shot but I've felt like I needed to do this for so long that I better at least start asking for help.

So there it is. If you don't know anyone can you maybe tuck it away into the back of your mind just in case someday you run into someone who might be able to help? Thanks.

It's amazing what taking a few minutes to distance yourself from a situation can do for your spirit. As I typed this Colby gradually settled down and went to sleep. Yes I just gave him 7different medications. He most certainly did not fall asleep on his own. That would be more than a miracle in my world. Any one of those medications would knock me out for over 24 hours. I will be lucky if I get 5 before he wakes up again at midnight. Then we will be up every 2 hours after that for a half an hour each time. The familiarness of my routine is sometimes a little to familiar.

I am calm now. I don't feel so lonely. I am in control and in charge again. Just knowing that I have friends out there who are my support network even just by reading this has lifted me up again. Now I just hope I have the strength to go battle a two year old into bed. Wish me luck!

*I wish I knew who to give credit to the picture above. It is beautiful and struck a chord in my heart when I saw it. I wish I could make it bigger also but that's how it has to be I guess.

Sunday, May 24, 2009

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Happy 6th Birthday

How in the world has it been six years already? It sure doesn't seem that long. I remember how excited we were to be having you and how scared you made us right away! I had to go to the doctors alot with you because first they thought you were an eptopic pregnancy, then they thought I was going to have a miscarriage with you and then you decided to do some funky heart beats during a routine checkup. I was so sick with you I actually lost 25 pounds. I think my favorite word for you is tumultous. Or maybe tenacious. I'm not sure which! Your tenacity showed itself before you were even born! You didn't want to come out! My doctor scheduled me to be induced after he got back from his vacation over memorial day weekend. You had other plans for that Friday night. I started contractions, went to the hospital, came home, immediately went into back labor and then went back to the hospital. You didn't want to come out and then when you did finally did decide it was time, the nurse told me I couldn't push you out because the doctor was delivering twins. So I had to "not push" for the next two hours. I was exhausted before you even got here! You were sunny side up so when the doctor was finally ready for you you decided to get yourself stuck for another hour! The vacuum they used on your head made your dad say you looked like a 155 shell. Leave it to Daddy to think of ammunition on the day you were born!

You are so loved little girl. You make every day an adventure. Sometimes your "experiments" take over the house and the backyard but that just shows your curiosity. You are always asking questions, looking for answers. You are learning to read so fast. Big words too! Daddy is excited that you have learned to ride your bike, so now you can go for bike rides together. We love the way you help with your brother and your sister. I know it's hard when little sisters get into your things. It's hard being the oldest! (Not speaking from experience or anything!) But you always end up sharing when they really want you to.

I know it's hard to always have mom at doctors appts and therapies also but you are very understanding. Your understanding of Heavenly Fathers plan for you and your siblings humbles me daily. Your prayers are so sincere and show such depth I am amazed at times. Jahnna I hope you know how much of a priveledge I consider it to be your mother. We love you and hope you have a very happy birthday!

Daddy used to make a bombing noise and then tickle you. You would pout and then laugh. It wa so funny to watch.

Helping Daddy shovel the driveway. You still love the cold more than the heat. Better hope we never move to phoenix!

Learning to crawl

Trying to sit on Winchester

Daddy's present to you after he came back from 5 months at FT. Carson in Colorado.

Red licorice makes a huge mess. Your grandma thought you were bleeding in the picture!

The first day of Kindegarten

Camping with Daddy

Princess Jahnna

Our little star

Saturday, May 16, 2009

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Deep thoughts

I will never forget the moment we were told Colby had a stroke. It is etched firmly in my mind as one of the darkest moments of my life. It is like a movie image some days. Like I can what was going on because I'm standing in the corner watching it happen to someone else. We came back from getting some breakfast because they took Colby down for a MRI. All we were told was that they thought he might be having a seizure. We came back and he was on a ventilator and back in the intensive care unit. The doctors grabbed us before we had even two minutes to start asking questions and herded us into the PICU conference room. The kidney doctor said "Well it's obvious that Colby is one very sick little boy. He has had a stroke."

I think the room might have actually spun for a few seconds before I could say "What?" "When?" "How bad?" I think it all came out very quickly and kind of jumbled. WE had just been told a stroke was a possible side effect the day before when they moved him out of the ICU but since they thought he was doing better it wasn't a concern. I don't know how long we were in the conference room. I think it was roughly a half an hour. The other thing that is firmly etched in my mind is "We don't know when it started. There's nothing we can do it just has to run it's course over the next 72 hours and we will know if he's going to make it then."

Make it? Seriously is that a medical term? Cause it's one I wanted to scream at them. This was just supposed to be appendicitis and now your telling me my son might not live? I can honestly say I don't think I stopped shaking for at least 72 hours. Until the next MRI came back and said the stroke hadn't progressed any farther and that he should be safe and could now begin the recovery process.

So why do I bring all of this up? Good question. The column underneath reminded me of that scene in the conference room. Thankfully ours wasn't stuffy and small. You do remember the exact moment you are told your worst nightmare. Does any of this change the way I feel about my life now? No. Do I wish it hadn't happened. Only for Colby's sake. I wish he didn't have to go through the hardships he has to go through But isn't that every mothers wish? To protect her children from the pains of the world. And so nothing changes. I am over the shock, I don't know that a small part of the anger will ever leave. I think it's a healthy part of the grieving process.

The other part of the grieving process is to realize why you do the things you do. Over this last week I've realized that I avoid one of my very good friends because she has a son one month older than Colby. He can still run and talk and eat and play. It's hard to watch. I do all right with girls his age but I have a hard time with boys. I hope that changes some day but for now at least I know why I do it and maybe some day I can stop feeling guilty over it. Anyway I am thankful that I got something more. I don't think I'm a wonder but on day like today I appreciate this womans words.

This is one of my favorite pics of Colby and I.

Some Mothers Get Babies With Something More
Written by: Lori Borgman Columnist and Speaker

My friend is expecting her first child. People keep asking what she
wants. She smiles demurely, shakes her head and gives the answer
mothers have given throughout the ages of time. She says it doesn't
matter whether it's a boy or a girl. She just wants it to have ten
fingers and ten toes. Of course, that's what she says. That's what
mothers have always said. Mothers lie.

Truth be told, every mother wants a whole lot more. Every mother
wants a perfectly healthy baby with a round head, rosebud lips,
button nose, beautiful eyes and satin skin.
Every mother wants a baby so gorgeous that people will pity the
Gerber baby for being flat-out ugly. Every mother wants a baby that
will roll over, sit up and take those first steps right on schedule
(according to the baby development chart on page 57, column two).
Every mother wants a baby that can see, hear, run, jump and fire
neurons by the
billions. She wants a kid that can smack the ball out of the park and
do toe points that are the envy of the entire ballet class. Call it
greed if you want, but we mothers want what we want.

Some mothers get babies with something more. Some mothers get babies
with conditions they can't pronounce, a spine that didn't fuse, a
missing chromosome or a palette that didn't close. Most of those
mothers can remember the time, the place, the shoes they were wearing
and the color of the walls in the small, suffocating room where the
doctor uttered the words that took their breath away. It felt like
recess in the fourth grade when you didn't see the kick ball coming
and it knocked the wind clean out of you. Some mothers leave the
hospital with a healthy bundle, then, months, even years later, take
him in for a routine visit, or schedule her for a well check, and
crash head first into a brick wall as they bear the
brunt of devastating news. It can't be possible! That doesn't run in
our family. Can this really be happening in our lifetime? I am a
woman who watches the Olympics for the sheer thrill of seeing finely
sculpted bodies. It's not a lust thing; it's a wondrous thing. The
athletes appear as specimens without flaw - rippling muscles with nary
an ounce of flab or fat, virtual powerhouses of strength with lungs
and limbs working in perfect harmony. Then the athlete walks over to
a tote bag, rustles through the contents and pulls out an inhaler.

As I've told my own kids, be it on the way to physical therapy after
a third knee surgery, or on a trip home from an echo cardiogram,
there's no such thing as a perfect body. Everybody will bear
something at some time or another. Maybe the affliction will be
apparent to curious
eyes, or maybe it will be unseen, quietly treated with trips to the
doctor, medication or surgery. The health problems our children have
experienced have been minimal and manageable, so I watch with keen
interest and great admiration the mothers of children with serious
disabilities, and wonder how they do it. Frankly, sometimes you
mothers scare me. How you lift that child in and out of a wheelchair
20 times a day. How you monitor tests, track medications, regulate
diet and serve as the gatekeeper to a hundred specialists yammering
in your ear. I wonder how you endure the clichés and the platitudes,
well-intentioned souls explaining how God is at work when you've
occasionally questioned if God is on strike. I even wonder how you
endure schmaltzy pieces like this one — saluting you, painting you as
hero and saint, when you know you're ordinary. You snap, you bark,
you bite. You didn't volunteer for this. You didn't jump up and down
in the motherhood line yelling, "Choose me, God! Choose me! I've got
it takes."

You're a woman who doesn't have time to step back and put things in
perspective, so, please, let me do it for you. From where I sit,
you're way ahead of the pack. You've developed the strength of a
draft horse while holding onto the delicacy of a daffodil. You have a
heart that melts like chocolate in a glove box in July, carefully
counter-balanced against the stubbornness of an Ozark mule. You can
be warm and tender one minute, and when circumstances require intense
and aggressive the next. You are the mother, advocate and protector
of a child with a disability. You're a neighbor, a friend, a stranger
I pass at the mall. You're the woman I sit next to at church, my
cousin and my sister-in-law. You're a woman who wanted ten fingers
and ten
toes, and got something more.

You're a wonder.

Monday, May 11, 2009

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Not me Monday

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

This is my first Not Me Monday but I've read three weeks worth of them on MckMama's site and I think it could definitely be a good form of therapy for this chaotic mothers life! So here we go.

I would never put Benedryl into Riley's bottle so she would sleep through the night. I get up on average 3 to 6 times a night to get Colby back to sleep. So I definitely wouldn't considering giving allergy medicine to my youngest so I don't have to wake up another 1 or 2 times during that same night. Nope not me!

I would never let my 2 year old sleep with a bottle after she was one year old. And I certainly wouldn't do it because honestly I don't have the energy to battle it out with her over a stupid bottle. The other two kids were done with bottles when they turned one but seeing as I do enough battles with Colby over medical issues it doesn't seem like such a bad thing to let a two year old have one. I certainly wouldn't be a mother who would let her child keep that bottle as long as she wants to at this point! Nope not me! They let kindergartners have a bottle at school don't they?

This crazy mother would never loose track of time reading MckMama's blog posts and almost have her 4 year old miss the bus because she hadn't put his wheelchair together. I am always on the ball and know exactly what time it is and am never seen wasting time reading blogs. That most certainly is not me!

I would never have my husband bbq steaks for just the two of us, while the two kids who can eat were at their grandma's house. Then give them left over spaghetti when they got home. That would be incredibly selfish to save a nice juicy steak just for yourself and not share it with your kids. I would never do that not me!

That's about all I've got so far. I mean I know there are lots more of them but those are just some of the ones that pop into my head as I type this. This just might be a tradition I keep. I feel better already!

Saturday, May 9, 2009

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Jack Rabbit Link in upper corner

I stumbled upon a website a couple of months ago through a yahoo group I belong to. I looked up the website and downloaded this great book called the Jack Rabbit Factor. I realized how much my thoughts had been affecting our situations in life and knew I had to change some things.

I realized how much the power of thought influenced our ability to get Colby Hyperbaric treatments when we had no means to do it. I figured I could probably apply this to other areas of life. Am I making millions today? No. Have I started small and am working my way up? Yes.

Thought habits are hard to break but I am working on it. Even if you don't ever do anything else with the program (And I haven't yet!) it' still a good download to read. It's totally free and you don't have to do anything else. Just thought I'd pass the information along to anyone else who might want to read it.

Here is one of the emails that I could have sent out but decided to just blog it instead.

Need a good dose of hope about your finances? Then you need to read the award-winning, national bestseller, "The Jackrabbit Factor" which will forever change the way you see life.

In fact, if you're like thousands of other readers, it could even improve your financial picture forever.

The power of this story comes through its ability to instill success principles into your HEART where they belong, instead of remaining primarily in the intellect.

After all, don't we all KNOW what we should do? But only those who get success into their heart ever see the results they seek. This story facilitates that change.

And best of all, you can read it for FREE!

Just follow the link below and you can watch a 4-minute movie about the story and download the book today.

"I tripled my income and my husband retired from his day job … To say the information is life changing would be an understatement! Thank you!!" – Marnie Pehrson,

Go get your copy and read it today, you'll thank yourself and so will your family.

Wednesday, May 6, 2009

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Got birthday pics?

Here are some pictures from Riley and Colby's little birthday parties. We will do a big family one later this month but we wanted to give them a little something on each of their special days. Riley only wanted to eat the whipped cream on her strawberry shortcake. She kept demanding more. Then she modeled her outfits for us after she opened them. Colby wasn't sure about blowing out the candles so Daddy helped. He loved his new Wubbzy movie and watched it until bedtime.

On a side note, thanks for putting up with my ad experimentations on here. I'm toying with the idea of starting a website for families of childhood stroke survivors and am trying out different ad companies. Please just put up with it a little while longer. Thanks.

Tuesday, May 5, 2009

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Happy Birthday Colby

My brave little man, how can you be four already? How have you grow and shown me strength I never thought I'd see? You have inspired many already in your short life. You bring us such joy and happiness. Even though your trials are many you have such a beautiful smile. Oops I guess I should say handsome smile!

Even though your body doesn't want to cooperate with you, you still always make an effort to beat up your sisters and mom and dad! In a loving way of course! And you never want to beat up your teachers or have daddy beat them up for you! We know how much you love school. You smile every day you get to go before we put you on the bus. Mom and Dad were so scared to let you go to school a year ago and now you ride the bus to school and back home again. How did that happen?

You still love to skateboard and as soon as this rotten rain goes away you and daddy will be back at it again. You also love to swing and jump on the trampoline. Your desire to play with other kids just shows us how much effort you put into your every day.

We are so thankful that you and your sisters are friends. They can make you laugh like nobody else can. I am so grateful for your relationship with them. You love Wow Wow Wubbzy, Blues Clues and Dora right now. On the other side of that you love playing resident evil and call to duty 4 with daddy on the playstation. How can you go from a bouncy yellow creature with a long tail to killing zombies I'll never know or understand! We are thankful that you have found something fun to do with daddy.

We love you so much and know that this year will be a great year for you! Happy Birthday Buddy!