Feeling overwhelmed

Dear Savannah,

Lately, I have been feeling stressed and overwhelmed. The culprit, transitioning you into a school that will fit your needs. It is so extremely stressful because I only want the best for you. You deserve an environment that will help you thrive, especially visually. I have learned a lot over the past few months and I am feeling more confident as your mommy, the one who loves you more than anything in the world, that I am becoming a very strong advocate. It is not that I have not been an advocate all along, it's just that knowledge is strength and I am learning more everyday.

Beautiful little girl

Last week, we had one of the busiest weeks I can remember. Monday, we had therapy and then you went to a GI appointment. There was concern about your weight. I always knew this day would come but I assured them you eat healthy and larger amounts than most toddlers. You weighed in at 21.14 lbs. I know you are small, but as Mimi said, I was always very petite. There are two reasons I feel are overlooked.  One is that you move, constantly. You are such a squirmy little girl and you love to move. I realize you are not running around typically like your peers, but in your own way, you are getting plenty of exercise and you work so extremely hard with constant therapies. I'm so proud of you. Two, it's the visual aspect. You don't see what you are eating so I choose to feed you very healthy. Fruits, veggies, protein, carbs, and not a lot of junk. Trust me, I treat you to cupcakes, ice cream and junk, but you don't see this stuff and can't communicate to me that you would rather have a cupcake than an avacado. Mommy has a sweet tooth so you benefit from this too. Tonight, you even had a few skittles after I squished them and bit them in half. They kept getting stuck to the roof of your mouth and daddy and I really enjoy watching you chew. It's adorable and we feel very fortunate that you are able to eat by mouth.

Tuesday, we had OT followed by evaluations from the school district. You had evaluations from OT, PT, and Speech. You really are the hardest working girl I know. Wednesday we had PT at home so that was our easy day. Thursday, we had school and had a chance to tour the most amazing school for  visually impaired students, Perkins. I'm not kidding when I say it's magical. I hope to see you as a student there someday. I dressed you in your new shirt and showed your superpowers with pride. Friday, we had a vision appointment and then clinic where you were fitted for new afo's. I also addressed your pronated wrist, tightness in your right ankle, and my concerns for school. For now, plan is to strengthen your shoulders to help you gain strength in your arms and wrists and to continue to stretch your ankles to prevent losing full range. We will also get another hip X-ray in the near future.

So on top of trying to assure you will be in the right school environment, all the therapies and appointments, I'm struggling with how I will be able to let go of you. We rarely spend time apart. You're my side kick, my favorite thing and I thoroughly enjoy you. I wish the laws in Massachusetts allowed for early intervention services ended at the age of five, not three. Maybe in two more years I would be ready. Probably not. I just really hope you are happy at school and that will make the process easier for me. I love you to the moon and back........

Love, Mommy

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)