Time sure does fly

There has been so much that has happened since my last blog entry, I can't believe it has almost been a month.  What's more unbelievable, is the fact Zoe turned 8 years old yesterday.  It seemed like only a month ago when she was brought into this world.  Time has gone by way too fast.

Here is a picture of the kids that came to her birthday party.  What a fun time it was.  We rented a place that does parties, called Jump and Bounce, for a couple of hours.  They have about 10 large jumping toys and slides.  Every kid was running wild up and down the slide, into the blow up maze, and even into the boxing ring pictured here. 

I stopped about half way through the party and just watched in amazement.  Here we had 11 out of 16 kids with a disability, playing with each other and having fun.  For someone to look from the outside, they would see typically developing children.  It was awesome!  I hope for the day, that society does not put labels on our children who have a disability, and accepts them as being the same as them - typical!  That day can't come soon enough.

Happy Birthday Zoe - I love you so much.  You continue to amaze me everyday, and I can't wait for what the future holds for you and for us. 

We never give them enough credit!

It's amazing what our little children know, which we don't give enough credit for. 

Zoe and her mommy just walked in the door from therapy, to find me watching football (what else is there to watch on Monday night).  Dinner was almost ready to serve, and I was sitting in my chair.  2 minutes after they walked in the door, Zoe looked at me and said "Abby", which means she wanted to watch Sesame Street.

Of course there was no way I was wanted to change the channel, so I looked at her and asked "don't you want to watch football with daddy?".  She said "NO" and replied "Abby" one more time.  This actually went on for a few more minutes, back and forth me asking her to watch football with me, she saying no and asking to watch Abby.   I got up out of the chair to check on dinner, and right behind me was Zoe, following pretty close.  I stopped at the counter and 2 seconds later the remote control was placed on the counter in front of me and the words "Abby" came out 1 more time.  I laughed and smiled really big, told her how smart she was and begged her to watch football.  I finally won.

After dinner was done, I got up to put away a couple of things, and Zoe followed me into the kitchen.  There was a pot holder on the counter, and she grabbed it and handed it to me.  She was helping me clean up, which was pretty nice.  As soon as she gave me the pot holder, she bent down and opened the drawer to show me where to put it.  Once again, I smiled and gave her a hug and told her how smart she was.

We sat down to watch a little more football, she was right next to me in my chair cuddling with me.  She gave me a hug, and once again told me "Abby".  I finally caved and switched the channel.  The smile on her face was priceless, and she jumped off the chair and planted herself in front of the tv.  About 5 seconds after sitting on the floor, she turned to me, smiled and put her arms around herself - telling me she wanted a hug.  She was thankful for getting to watch Abby, and I am thankful for such a wonderful little girl. 

Just because a child has a disability, it doesn't mean they don't know what's going on!

Day to day

Its so much fun to get phone calls from my wife, no matter what our daughter is up to (good or bad).  There are two phone calls in particular. 

Saturday morning I was in Seattle for a Fathers Conference (for fathers who have a child with a disability).  Before the conference started I called my wife to see how their morning was going.  I listened in the background and heard Zoe crying and basically throwing a little tantrum.  She did not want to be in the car, but would rather be anywhere else.  The little tantrum continued throughout the day, and my guess, would have to be the amount of sleep vs. all the activities Zoe has throughout the week. 

This morning I received another phone call, actually 2.  The first call was from a happy girl who was so proud of her growth, she had to tell her daddy.  Last night she had physical therapy and had some good work done on her back and shoulders.  This morning, my wife measured her (we have a wall chart in the pantry closet), and she was 44" tall (she grew a bit).  She was so proud of her growth she wanted me to know, but when I answered the phone she decided she wanted to get back in the closet. 

The second call I received, which was about 15 minutes after the first, was one that does not happen very often.  My little girl did her business in the toilet, which is the 2nd time ever, and she again wanted me to know.  I immediately praised her and told her how happy I was!

Phone calls like these are awesome!  If there was a way to be home all the time, that would be better.  But, until retirement comes, the calls every now and then like this are just wonderful!

Just sometimes......

Sometimes I find myself wondering how my life would be different if my child was typically developing.  I really hate myself when I am doing it, and stop when I do.  I love my daughter more than anything in this world, and am so thankful that she has disabilities.  She has opened my eyes so much, and opened my heart even more.

She has taught me the true meaning of love! 
She has taught me how to be a good person!
She has taught me how to care!
She has taught me about life!

I am a better person because she is in my life.  I would not change anything about her if I were given the chance.  I would not change anything about my life.

But there are times when I see little girls running around in the school yard and I try to picture what would be different.  At those moments I get a little tingle in my body and am so grateful for having her just as she is.

My wife and I are so lucky!

I love you Zoe!

Joys of Growing Up

When your child has a disability, there are times when some activities become exciting.  Some of these activities happen much sooner in a typically developing child, and might not bring as much joy to a parents heart.  Over the last couple days we've had two of these activities happen.

We have been working on potty training for many, many years now with Zoe, with a little success.  So far there have been a few times when she has mentioned "potty" and we have taken her to the bathroom where she has been successful.  But there have been a lot more times when she has said that, but meant she already went. 

Friday during work I received a call from my wife.  She informed me Zoe told one of her teachers "potty" and her diaper was dry and she actually had to go.  This was a first and a very exciting moment.  Something might be catching on after many years.  Zoe got a lot of praise!

The other item that took place is something that can be very dangerous with a child who has issues walking.  No matter what we do, Zoe wants to do it as well.  The one thing she has been wanting to do on her own for the past year was walk up the stairs.  This has never been an option for us, and will be a concern for a few years still. 

However, over the past 2 weeks, Zoe has insisted she walks on her own and says "I do, I do, I do".  We have been very careful to hold on to her as she walks up 1 step at a time, holding on the the hand rail the whole time.  Well, the other day she had an issue with my wife holding on as she started up the first step, insisting she do it by herself.  With my wife standing close behind, Zoe took one step at a time and walked up the stairs on her own.  There were a couple of times she would have fallen back, but she still managed to do the whole flight of stairs, one by one.  Since that time, she has decided she wants to do it on her own when she can.  We will have to be behind her each time, and keep a very close watch on her every step, but some day she will be running up and down like any typically developing child!

Dear Zoe - 11-21-02

I'm back, for a short time only.  Your mom just got here and got to go in and see you.  She didn't look that good.  She's been dying to see you, as have I.  Just before your mom showed up, your grandpa got to see you a second time.  Boy, did he almost lose it.  He, of all people, needs to be strong for your mom and me.

So far your little operation hasn't been a success - but I'll write more about that later.  But I want you to know that you are in God's hands!

Letters to Zoe - My Darling Daughter

11-20-02

Blessings have filled my life today,
    A daughter has come to me,
A lot smaller than we all had thought,
    Like a grain of sand, in the sea.
Less than a pound at time of birth,
    Many trials to come your way,
Love is the backbone to your beginning,
    Many prayers we all will say.
God has graced us with a blessing,
    knowing we were the perfect pair,
Not any parent would do for Him,
    He knew of the special care.
Hard times seem to come and go,
    We know there will be more,
We will make it though this time,
    For our love will be the cure!

Letters to Zoe during her first months in the NICU

On November 19th, my wife and I were blessed with a gift from God.  Zoe was brought into this world a little earlier than we would have liked, but due to medical conditions, we had no choice.  At 10:37 she showed up weighing 15 ounces and 10 1/4 inches long.  Yes, she weighed less than a bottle of soda.

The picture above was taken right after she was born.  You can see my wedding ring all the way around her arm.  Yes, she was very, very small!

The place she was born was not set up for a premature baby of her size, so she and I were flown the next morning to the NICU in Spokane where she stayed for the next 8 months.  I have many stories to tell of her time spent there, some happy and some very sad.

We lived a little over 2 hours away from Spokane at the time.  My wife stayed with Zoe and spent the next 8 months in the Ronald McDonald House (if you get a chance to donate to them - please do).  I traveled back home every Sunday and came back to see my girls on Friday after work.  It was so hard being away during the week, only being able to talk on the phone.  While I was home during the week, and at times on the weekends, I spent time writing letters to Zoe so one day she would know what her beginnings were like.

The posts to follow (when I have time) and between other posts - will be called "Dear Zoe".

Dear Zoe, 11-21-2002
Dear Zoe, I was given a book today titled "Letters to Zoe" about a grandfather writing letter to his newborn granddaughter.  Like you, she was premature at birth - but a little bigger.  I was inspired to do the same, so you would know what was going on during this time in your life.

Where do I begin?  I guess I'll start by saying you are currently 41 hours and 30 minutes old.  You are so tiny, I can't explain how small you are.  You were born on 11-19-02 at 10:37pm, weighed an amazing 440 grams (around 15 ounces) and were 10 1/4 inches big.  At this moment, you are getting prepped to have a tube placed in your leg - a necessity to give you the fluids you need.  I am in the waiting room - waiting.  Your mother was released from the hospital about 1 hour ago - and is on her way her to see you.  You are so beautiful - and tiny.  You have a perfect body - all your fingers and toes, hair on your head, eyebrows, fingernails and toenails.  Sometimes you open your eyes to display to me those wonderful eyes.  I'm sure you are asking "How did I get here".

With that, I will leave the rest of the letter out, as it goes on about my wife and I meeting.

The Simple Things - Mac & Cheese!

Last night when I came home from work, I had a nice surprise waiting for me:  Mac & Cheese with Hamburger.  Little to my surprise, it seems to be one of the foods that Zoe can eat, and does pretty good at. 

The therapists, Darci and I have been trying a lot of different items for her to eat.  She does not chew her food, so things need to be in a pudding consistency.  We have found that small noodles are items that Zoe has no problem with and will eat them one at a time.

I remember 2 years ago, Darci mentioned that she like Mac & Cheese, and asked if I would give her a little bite.  At the time, I was not thinking, and gave Zoe a whole noodle.  This may not seem like much, but for a little girl who has not really eaten anything by mouth, especially that big, things don't go as planned.  She got the noodle stuck, gagged, and had a hard time breathing.  After a few pats on the back, it became loose and she spit it out.  Since that day, I have not offered anything but 1/4 of a noodle when I share my Mac & Cheese.

Back to last night.  As I was feeding her the 1/4 sized noodles, I figured I would see how she would do with one that was twice as big.  She seemed to handle it with ease, and we moved up to a bite that was 3/4 of the noodle.  Once again, no problem with the amount.  Here came a full noodle - and she smiled big after she had eaten it.  This went on for about 40-50 whole noodles when she finally said "Dun".  She had eaten so much, and we were so proud of her!

We just now finished lunch, and guess what we tried again, yes - Mac & Cheese!  But this time, it was plain and all for Zoe.  I measured out 1/4 cup and put it in a bowl for her.  One by one she munched until there was about 15 noodles left.  She looked at me and again said "Dun" with the biggest smile.  She knew she had done something that made Darci and I proud, and we let her know!

I filled up the bowl and started in on some for myself, and about 1/4 the way through, Zoe looked at me and said "Nummy".  She wanted more and I couldn't believe it.  She had about 20 more noodles before we were all done with the bowl. 

Things are going in the right direction, and soon she will be cutting her own steak.

1st Day of School

Yes, this is the happy smile that we get to see all the time.  Yesterday was the first day back to school, and Zoe was very excited.

At the end of the day, the teacher told my wife how much she thought Zoe had grown.  Last year, she really wasn't that talkative, but yesterday she was very verbal.  Over the summer, she added a few more words, and actually started putting more words together.  The teachers got to see this first hand, and seemed like they were pretty pleased.

The other big change over last year, Zoe is not as clingy to adults as she was the previous year.  I had to laugh at that when my wife relayed that to me, as I think she is very clingy to us and other adults.  I am very happy to actually hear that she did more with the other kids in the classroom than she had done last year. 

When I got home from work, Zoe was excited to see me, as usual.  She had a little extra excitement to her, and I'm sure it was there because she was happy school had started.  I asked her if she liked school and if she had a good day, and her response was "yyuuuss". 

I look forward to a great school year!

2nd Grade Starting

Where has the time gone?  Here is my daughter, starting 2nd grade tomorrow, who seemed like just yesterday she was beginning to walk.

Last night was an open house at the school, where we got to meet the teachers and other children that will be with Zoe for the year.  Luckily for us, it is mostly the same kids and teachers as last year. 

After we got to the school, we entered into the classroom where the teachers were waiting on the kids to arrive.  Zoe looked up, saw her teachers from last year and smiled from ear to ear.  She immediately said "OOOOOOOOOOO", which is what she calls one of her teachers.  She ran over and gave her a hug, and then went to the other teachers and did the same. 

It was nice to see the other kids as they made their way into the room.  They all remembered Zoe, and said Hi to her.  She smiled and replied "Hewwwo".  I think she is excited for school to begin.

Our little girl is growing up quickly.

Frustrating Moments

Last night my wife told me a story of a family who has 2 children in our community, who have special needs.  Without going into too much detail, they are having problems with the local school district.  After my wife had informed me what was going on, I was so frustrated. 

In a nut shell, one of the people in authority with the district finally came out and told this family their child did not belong with the typically developing children.  This person went on to say the other kids (typically developing) would not play with them on the playground, so they should keep them out of that class room setting.

Wow.  A child has no reservations, and wants to play with other kids.  They don't know the hatred yet towards someone who is different, until we have people telling them to do so.  What makes our child different than any others?

When will society wake up and realize just because someone is different in their own way, they have a heart and feelings?  Do we have so far to go still?  A child has no reservations towards people, until they are taught to be so.

But to have this come from a person within the school district is just mind blowing. 

FRUSTRATED!

Food for thought

There are many times in life we take things for granted.  One of them is the simple task of feeding your face.  We eat breakfast, lunch, dinner and many times throughout the day we snack on things which taste good to us.  Once we learn this at an early age, we just go through the process.

Many people are not capable of performing this task, due to one reason or another.  For Zoe, it is a complicated process to eat through the mouth.  When she left from the hospital at 8 months old, Zoe ate like a typical child does, from a bottle.  At that time, we thought everything was going to be smooth sailing.

1 year after leaving the hospital, we ran into a situation that required some immediate attention.  Zoe quit taking the bottle by clamping down and not eating at all.  At that time, she weighed 16 pounds.  We had the hardest time feeding her, and she began to lose weight.   After many doctor's visits and tests, we found out she had very bad reflux, which made eating painful for her.  We were put into a situation that needed a solution in a hurry.

We met with a wonderful surgeon, who had performed an operation on her when she was only 2 days old.  He recommended having a feeding tube installed, and explained the whole procedure.  It was hard to agree to, but we figured that was our only option as normal bottle feeds were not working. 

Zoe has been using the feeding tube now for about 6 years.  It's a very simple process, but one that seems anything but enjoyable for her.  She does not taste the food or feel the texture.  We have been going to a feeding clinic for some time now, and just recently has she really started to take to typical food. 

Her favorite thing in the world to eat is a banana.  When my wife grabs one from the bunch, Zoe hears the sound of it separating from the others and immediately says, or yells "bnnnnaaaannnnnaaaa", and jumps up in the couch.  She knows she will be getting some and prepares herself for her bites.  When I am in the room, after she takes a bite, she looks at me with the biggest grin and says "nnuuummmy". 

I often look back at that little 16 pound baby and remember the pain we went through as we tried to feed her.  Like many things in my life, it was a moment I will never forget and often wonder what we did wrong.  I know there is nothing we could have done different, but it will always be with me.  As parents, we can only do our best and provide as much love as possible.  Decisions will come that are hard, and at those times we have to do what our hearts tell us.

Kids are funny

It's the simplest things in life that can bring out a smile or a laugh in someone.  For me, just watching my daughter do some ordinary task can bring joy to my heart.  At times there are moments when I stop what I am doing and just laugh.

Last night we were sitting in my chair (as we often do), watching one of the Star Wars episodes.  Zoe wasn't really into it, but sat there telling me she loved me in her own words.  She would say "I wu uu daddy" and other times "Daddy cute".  This went on for about 20 minutes with some hugs and a lot of smiles in between. 

However, she stopped all she was doing at one point in the movie.  Darth Vadar and the Dark Side Emperor were walking down the hallway talking about the Death Star.  As most of you know, Darth Vadar has speakers in his head piece and you hear his deep breathing.

All of a sudden, Zoe starting taking very slow, deep breaths in and out as she imitated Darth Vadar.  I stopped watching and looked at her out the side of my eye.  She was not paying any attention to me, nor was she doing this for attention.  She was just having fun imitating someone else.  This went on for about 3 or 4 minutes then she caught me watching her.  At that moment she started grinning from ear to ear, as she knew I was about to laugh.  I couldn't keep my laughter back, and we both joined together for a few minutes in giggles and smiles. 

I never want to miss those moments.  We often forget to pay attention to times like that, which bring smiles all around.

Sports and a Dad's Dream

As a father, most of us dream of the days when we will be teaching our children how to play sports. We will show them how to throw or kick a ball, catch a pass, swing a bat, club or racket and how to play by the rules. Our kids will hopefully be taught all the ways to win or lose with grace, and the main teachings of sportsmanship. Yes, being a father has many perks, one of them being able to pass on our knowledge of sports.


But what happens to our dreams as a father when our child is born with a disability? How do we teach a child how to throw a ball when they have no way of even grabbing one. How do we teach them to kick a ball through a goal when they have a hard time just walking on their own? How do we teach them to swing a baseball bat when they can’t grip around the handle? If they have a hard time walking, how do we teach them to run down the field? If you are like me, some of your dreams were crushed when you found out your child had a disability. There would be no chance to pass on the knowledge we have from our youth. At least that is what I thought until 2 years ago.


Yesterday I was able to watch as Zoe put a soccer ball into the goal for the first time in her life. I sat on the sidelines, like I had always dreamed of, cheering her on, with camera in hand. How was this possible? How could a child who has no knowledge of soccer, become a player in less than 1 day. Actually it’s quite easy after you understand what takes place during the game.


2 years ago I was asked by my wife, what I thought about Zoe playing baseball. I thought she was trying to hurt my feelings, as I knew that was impossible. I asked how could our daughter play baseball when she couldn’t run, throw, catch or hit a ball. There was no way she would be able to play. Even after I was told about typically developing children helping them do all those things along side our child, I still said there was no way. But I didn’t even think about the possibilities until that night. While I was in bed trying to go to sleep, I had visions of another child helping Zoe do all those things while they were on the field. I saw a boy helping her swing, like I would if I would be teaching her to hit the ball for the first time. I saw a boy holding her hand and going through the throwing motion as she tossed the ball to another player. Yes, I realized there was a way for a child with a disability to actually play a sport.


The next day I was excited about my thoughts the night before and shared with my wife that I wanted Zoe to play baseball. Turns out they needed a coach that year for Zoe’s team and asked if I would help them out. Here I went from a father who’s dreams were crushed to a father who realized how shallow minded he was. I am no longer narrow minded when it comes to sports, or any activity.


Yesterday, Zoe had the biggest smile on her face as 2 young girls held her hand and directed her down the soccer field.  They walked with her, helping her kick the ball and my wife and I sat on the sidelines, our hearts full of joy.

First Entry

Hopefully this blog will help other dad's who have children with disabilities realize there are others out there, who are just like them.  Trying their best to be a dad to their child.  No matter what, don't ever give up and make sure you love your child the best you can!

This blog is dedicated to Zoe, my daughter, who has taught me so much about love and life, despite having disabilities.  She has disabilities, her disabilities do not have her!  She is 7 years old and lives her life to the fullest.

She has cerebral palsy, cortical visual impairment and developmental delays.

Cerebral palsy describes a group of permanent disorders of the development of movement and posture, causing activity limitation, that are attributed to nonprogressive disturbances that occurred in the developing fetal or infant brain. The motor disorders of cerebral palsy are often accompanied by disturbances of sensation, perception, cognition, communication, and behaviour, by epilepsy, and by secondary musculoskeletal problems.


Of the many types and subtypes of CP, none of them have a known cure. Usually, medical intervention is limited to the treatment and prevention of complications arising from CP's effects.

Cortical Visual Iimpairment is also sometimes known as Cortical Blindness, although most people with CVI are not totally blind. The term Neurological Visual Impairment (NVI) covers both CVI and total cortical blindness. Delayed Visual Maturation, another form of NVI, is similar to CVI, except the child's visual difficulties resolve in a few months. Though the vision of a person with CVI may change, it rarely if ever becomes totally normal.

Developmental delay refers to when a child's development lags behind established normal ranges for his or her age.

At the age of 7, Zoe walks and talks, but has a development of a child somewhere around 3.  Her vocabulary has some where around 85 words, but she seems to be adding new ones often.