My inspiration, my passion.

Dear Savannah,

We have had a very busy week with more transition planning, therapy, school, plays, basketball playoffs, and the first of seven transition evaluations, all that need to be complete in two weeks. I also spoke on a Parent Panel at Perkins School for the blind. We are not lacking in the "busy" department.

Abi was in a really cute school play and you managed to sit quietly (except for growling) for more than 1/2 hour. Tuesday, Sam had a basketball playoff game and again, you managed to sleep through all the whistles, yelling, and clapping for a 1/2 hour. I love watching basketball. It is my favorite sport to watch. I was born a midwestern girl and absolutely love basketball. When I was a little girl, I played too. I was better at handling the ball and stealing it away from the other team because I was very aggressive. I also have a very deep love for the Kansas Jayhawks. We also attended another play, and you continued to growl. I thought you might have something going on with your throat so I took you to the pediatrician, but no, you just like to growl.

I wonder what you will enjoy. Right now, if I had to guess, I would say a musical performer. You bang on your piano and love everything musical, especially your xylophone. Daddy and I play it for you now, but overtime, when you develop fine motor, you will take over. You also played the xylophone piano at school this week and loved it. I bought a xylophone ornament for you as your ornament this year.

I was asked to participate on a parent panel at Perkins. It started with tears, telling our story because I was very nervous. There were 30-40 educators and students in the room. A mom from our group talked too, along with a dad from a different group at Perkins. Both parents are amazing advocates too. I was so proud to talk about our experience that I probably went a little off topic at times. As long as everyone felt they learned something, I feel that it was successful. I  brought a picture of you and propped it up right in front of me. "Awwwww", is what I heard from the crowd. Yes, Savannah Mae, you are an adorable little girl. I wanted to bring a picture so it would be more personal. I'd do it again in a heartbeat. You give me passion and I just love that feeling.

The picture I used :)

I talked about raising a child with special needs and how rewarding and is amazing it really is. All the little things that people take for granted, are actually HUGE thing for us. Your first smile, your first laugh, you learning to sit unassisted, and you learning to bear weight. All of these things have come with a lot of patience and a TON of hard work on your part. These things don't come natural, you have to work hard for them. We earn them by helping you. You are a huge inspiration to me. I couldn't love you more. You give me so much passion to be better, advocate more, and just enjoy you for who you are. I love you sweet girl. And just so you know, we are preparing for yet another snowstorm, in March. If I am grumpy, I hope you will understand. I am so over the snow.

Love, Mommy

Little things...Big Rewards

Dear Savannah,

Today, you are three months shy of your third birthday. I am having a hard time with you turning three because of you transitioning into school at such a young age. You are still so baby like to me. You need more care than most three year olds. Selfishly, I have just enjoyed everyday with you and I don't want to give up my time as your mommy. I know it happens to every mother as they learn to let go, I am just so not mentally ready to do this and I am finding myself with a lot of anxiety right now.

Unfortunately, you have another cold. You are handling this one pretty well, although I worry about another ear infection because you spend many hours a day on your back. We prop you up but you are just too active to stay in the ideal situation to help with your congestion. I'm very happy that you are so active, especially because you are not mobile.

Things change for you went you are not feeling great. For example, feeding you can be a bit trickier. Tonight, you gagged on your bite size pears several times before I made a pear mash instead. I'm not sure if it is because you are congested or lack of coordination, however, safety first and so I mashed away. You have also been dropping your head in your stander more, as if it is really heavy and hard to keep upright. Normally, this isn't really an issue but lately it's been tiring for you. I also know you are gaining good strength so I try and challenge you to work through it.

I talked with Papa Don yesterday. He sent me the sweetest text about these letters I am writing for you. When I talked to him, he said it made him a little sad to read them. I don't want him to feel sad because I love my role as your mommy. Raising a child with special needs is so rewarding. I would like to think more rewarding than raising a typical child. However, because you are my only daughter, I really have no idea. All children make their parents proud, it is a different pride.When you do something, for instance, when you lift your head from the belly position, my heart beams with pride. I have watched you struggle to do this so when you hold your head high, I am more then impressed. Hard work is paying off. Most babies can do this with ease within a few months. They don't need to be trained through therapy. It just happens naturally for them. This is why I think raising you is even more rewarding. You always amaze me. So, next time we see Papa Don, maybe you can show him something new and amazing.

I hope you feel better when you wake up. We have a big week ahead. We are packed with all of your therapies and I am speaking on a parent panel at Perkins. I am pushing myself outside of my comfort zone and choosing to do this because I am very passionate about you and if I can help give any advice by sharing our story then I accept the challenge. Sweet dreams my love.

Love, Mommy

Low Vision Clinic

Dear Savannah,

Today was our first day back to work following a very long weekend. The B's took the kiddos skiing for a long weekend and we had three extra days to spend at home together. I only wish the weather was a bit nicer so we could be outside. The snow has been too much and too often this year. I am craving spring weather.

This weekend, I worked on a new project that I hope raises funds for hydrocephalus. I started making bows to sell, all proceeds to hydrocephalus research. It is very important to me to do something I can, to honor you. It is hard asking people to donate money so I thought I would approach things different this year. I am still working out the kinks, but I have several bows ready to go.

Today, we had an appointment at the low vision clinic at Perkins. I like this test. Dr. Kran is very knowledgeable about CVI and he allowed appropriate wait times for you to use your vision. We did have to dim all the lights and lie you on the floor and use light up toys but you did well. Your vision is below your age range, however, it continues to improve. You are doing a great job and I am proud of you, He gave me some good advice and seemed very pleased with your progress in the last fifteen months. Way to go big girl!!

Speaking of big girl, you sure like to stand for brief periods these days. In the last six months, you have shown interest. Before, every time I tried to get you to bear weight, your legs would turn "frog like" on me. You had zero interest. Now, you seem to really enjoy being upright. I know your stander is helping. We try our best to get in two hours a day, usually in one hour increments.  Some days, like today, we are just too busy. You are such an awesome kid. I love you sweet pea.

Love, Mommy

On the day you were born

Dear Savannah,

We have been enjoying our long weekend together. You are awake in bed and I can hear your hiccups over the monitor. I have no idea why you insist on waking, shortly after I have put you to bed. It drives me a bit crazy, but I love you nonetheless.

A few nights ago, I was going through my Facebook feed and watched a video of Baby Mason, who is batteling cancer. His mommy posted a video of the day before his birth and it brought back so many memories of the day you were born. I even started crying.

When you were born, you were not handed over to me for a photo of the strongest bond that exists, between a mother and her baby. You were surrounded by many doctors in the right corner of the room and they held you up so I could get a glimpse of my beautiful baby girl before you were whisked away to the NICU. You had apgar scores of 4 and 6 and you were struggling to breathe. I was scared and sad and all I wanted to do was snuggle you from outside of the womb. I wanted to hold my baby girl. You were born at 3:41 am (no wonder you are a night owl) and it wasn't until after 6a.m. until I would see you again.

You are perfect!!

After I gained enough strength and the nurse approved, I was wheeled down to the NICU. I remember sitting in wheelchair and looking at you. Your little face covered with a CPap and needles in your fragile little body. You had an enormous hemotoma on the left side of your head. I wasn't allowed to hold you at this point. The stream of tears filling my eyes made a very blurred vision of you. I remember the nurse asking if I would like a photo to take back to my room. I thought she was crazy but now I do regret not wanting any photo of you. It was just so scary to see your little itty bitty life fighting so hard.

I had a short amount of time with you before I went back to my room for a little rest. I spent all the time I could with you and trying to get you to nurse. You had a lot of trouble nursing, so from the beginning, for almost a year, I pumped. You did nurse too, it was just very hard. We remained in the NICU for the next forty days. I rarely left your side, although I was constantly encouraged to do so. My heart was with you from day one, and it will forever be with you.

I love you Savannah Mae.

Love, Mommy

The day you finally broke out of jail!! (40 days old)

You BOW me away...

Dear Sweet Savannah Mae,

You are asleep in the bed I just crawled into. Your cheeks are a little chapped from all this bitter cold weather and the fact that your hands are ALWAYS in your mouth.:) Today, we will go to school (weather permitting) and give out your first Valentines.

I have been extremely stressed about your upcoming transition and IEP meeting. I want you to know I will do everything in my power to help you get all the services, along with placement that you deserve. I need to know that a school can provide you with more than mommy and daddy before I can send you. I will always be your number one advocate and daddy will always be on our team.

This year, I made Valentines to give to your friends. I made the boys and girls different ones because I love to make bows and your class is full of boys. As cute as the boys are, I thought they would like something more manly;). Someday, when you are bigger, I hope you will enjoy crafting as much as mommy and together, we will craft.

Valentine, You BOW me away! (Daddy came up with the phrase, mommy just made the bow:))

You make my heart glow because your school buddies have visual impairments too.

Donut you know how much we appreciate you! (Donuts for the volunteers at Perkins)

Savannah Mae, I couldn't ask for a more pure and everlasting love than the love I feel for you. I am so proud of you. You are beautiful and sweet and I love you more than anything on this earth. I can't imagine loving anything more.

I have never met anyone in my entire life more determined than you. You work so hard at being a toddler and trying to accomplish milestones that many babies do with ease. You will get there my love. I'm confident that your inherited feisty quality will take you very far. I love that the moment you were born, you were feisty. We can't blame Daddy for this gene. It comes from Mommy and Papa Don, maybe a teeny tiny bit of Mimi.

Tonight, I captured a precious photo of you looking, really looking at Daddy. It was so sweet and well, you make my heart glow. You are my world, my tiniest valentine. I love you to the moon and back and then some. Sweet dreams!

Love, Mommy

A fun filled snow day

Dear Savannah,

   Just as the ground was almost bare, we were hit with another snow storm. The good thing was that we had a snow day and stayed at home. I wanted to make the day special for you. Last February, we had a major snow storm around the same time. It was really your first time outside exploring the  snow and Mommy took the opportunity to use all this cold, white, fluffy snow for a valentine photo shoot. This year, we did things a bit different and you experienced some new firsts.

   We started the day around 9:30am. Yes, you slept in and it was wonderful. While you were sleeping, I found a new recipe for pancakes because you love them so much. I think it is the maple syrup:) After breakfast, I bundled you up and we headed outdoors before Daddy had to start plowing our driveway.

   Last year, we were given a really cool sled, one you can push and pull. I adapted it the best I could to keep you upright and then, you were given your first ride in the snow. The snow was wet and falling pretty hard. You had snowflakes landing on your long lashes. You were smiling and very happy. We went on our street where the snow was not as high and you loved when Daddy was pushing you down the street. You are an adventurous little bundle. After about fifteen minutes, we put you in the snow and Daddy helped you make a snow angel and mommy took lots of photos. Then we headed inside and Daddy started a long day of snow removal.

   I decide to treat you to snow ice cream topped with purple sprinkles. It took you a minute to adjust to something cold, but once you did, you loved it. I have to say, it was pretty good. It consisted of a mixture of snow, coconut milk, sugar, and vanilla. Of course you also needed to experience another first so I gave you a little Godiva hot cocoa, or should I say warm cocoa. I put this in your bottle for you. When you are bigger, I will buy a special hot cocoa mug, just for you. I promise.

   We spent the rest of the day inside relaxing and playing. Of course, I managed to sneak in two hours of standing too. We had a really fun day, just the three of us. I look forward to many more new adventures with you. It is so fun being your mommy. I love you sweet pea!

Love, Mommy

February 1

   Today is February 5, 2014. However, four days ago I wrote you a letter that I will copy for you. My intention was to put it on our blog, however, our internet connection was slow so I wrote an email to myself in bed. I will share it with you today.

Dear Savannah,

   Today is February 1, 2014. This day has a history for us, not always the news I wanted to hear or was necessarily expecting, but we have always been able to cope with February 1.  In 2011, I received news that one of my very best friends, Destiny, had lost her husband Chris to his battle with cancer. Chris was a really great guy and a long time friend of mine. I was very sad. I couldn't imagine how Destiny would cope raising two children alone. You see, they were high school sweethearts. They loved each other for half of their lives. Not to mention, Destiny had lost both her mom and dad a few years prior. I wondered how one amazing sweet girl could endure so much pain. I'll tell you today, she is happy and positive, a truly inspiring woman.

Daddy and I went in for a special doctor appointment, because at that time, you were still growing in my belly. We had scheduled an amniocentesis but declined to follow through. They wanted to do a microarray analysis of your chromosomes and well, we already had one procedure and I really didn't feel the need to risk anything with another. You see, Daddy and I knew we would love you and care for you no matter what any doctors would tell us about your chromosomal makeup. I still had my fears of the unknown but I walked away from this procedure.

On February 1, 2012, you had just turned eight months and I was very concerned about your vision. You never really looked at mommy. Sometimes I felt that you were looking at me, other times I felt like you were looking through me. However, you loved to stare at the lights and would often look up at the mirror while you were in your snuggly bunny swing. I knew you had some vision. I scheduled an appointment with a vision specialist at Children's Hospital and that appointment happened to be on February 1. They ran vision tests I never knew existed starting by looking at stripes and showing you light up toys. Then we moved you into another room where the used a sticky paste to stick electrodes to your head in five different places, maybe seven, as you sat on my lap with the lights off and a screen in front of you. The test is called a visual evoked potential, or VEP. They were measuring the electrical activity of certain areas of your brain in response to sensory input. It was a very long appointment, two hours long. Daddy came to the appointment too. I needed him because that day, you were diagnosed with Cortical Visual Impairment. We were told you were legally blind and my heart broke in a million pieces. They also told us that you would need to wear prescription glasses and at the time, this made me sad too. I had never realized how adorable glasses would look on you.

(The photos are from your first day with glasses. Little did we know at the time, the frames were too big.) 

I always knew your vision was not typical, however, I always thought it was because you have hydrocephalus. You have the most gorgeous eyes and lashes. An outer rim of blue, with beautiful hazel green. Your left eye also has a little brown speckle located at 7 o'clock. Your lashes, thick and long that make almost everyone envious. That day, February 1, 2012, I questioned so many things. How could this beautiful little girl, who already has one health condition, have another? How could your beautiful eyes not work like mine? How will you learn? Will you be made fun of? How hard will the road ahead be?  The two things that hurt the most- Will you ever know what I look like? More important, will you ever know how physically beautiful you are? You my love, are learning to explore your world and you are the most beautiful girl in the whole wide world and I am so thankful for you.

As time has passed these last few years, I couldn't be more proud to call you my daughter. You have come a long way and your vision has improved significantly. Although your vision is not typical, you do watch me move around the room, you love to look at the t.v. and your Ipad. You love toys that light up, but you still prefer music to light, especially a xylophone. Occasionally, you "peek" at me too and this makes me feel wonderful. Your daddy and I are so proud of you. You are an amazing little girl, Savannah Mae.

As far as February 1, 2013. I have no recollection of the day. Today, February 1, 2014, we have electrical issues that went from minor to major. Such a unwanted problem, but minor in the grand scheme of things. We had a great day together, just hanging out. I love you sweat pea.

Love, Mommy