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!
Wednesday, September 15, 2010
Saturday, September 11, 2010
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!
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!
Friday, September 10, 2010
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!
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!
Thursday, September 9, 2010
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!
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
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.
Saturday, September 4, 2010
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.
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.
Thursday, September 2, 2010
1st Day of School
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!
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