Happy Half Birthday, Sweet Pea!!!

Dear Savannah,

We have been on this journey for three and a half years today. I am so beyond blessed to be your mother and I love every second of it. You are my tiniest teacher and never in a million years would I have imagined that someone so tiny, could teach me so much.

At three in a half years, you are still working on sitting, but you are stronger and stronger every day. You roll, and roll, and roll. I feel exhausted as if I'm chasing a toddler running wild but instead, I'm constantly make sure you are not rolling into tables and tv stands and that you are safe. You do seem to be aware when you get close to something, which is great and I am sure as you get older, you will be even more aware. You are lifting your head with ease and keeping it up longer than ever. Sometimes Daddy and I wish we could wrap you in bubble wrap, or at least your precious little noggin.

I honestly have no idea what you are seeing, other than light. I know that you are motivated by food. Your spoon, you hold it longer than anything and you turn your head in the direction of food. Is this smell, or sight? Only you know, however you are your fathers daughter and he is very proud of your eating:)

You are bearing more and more weight on your tiny little feet. You still wear 0-12 month socks. You also are in 18-24 month clothes and a few 2t. Your are tiny and petite and perfect in every way. You are 23 pounds but I'm not concerned because your diet is very healthy.

You have been going to school for five months and you are thriving. I'm happy to get a chance to observe you in your classroom as much as I can. You may not be the youngest, but currently, you are the adored "baby" in the school and might I add, best dressed too. You're a cool kid!!

I love everything about you. Your tangled, but gorgeous dark brown hair. Your smile, it is so infectious and takes over your body. Your eyelashes are enough to create the word jealousy. Your eyes, I'm envious of the hazel green color, the brown speck at 7 o'clock in your left eye, and the way your eyes sparkle. I love your dimple, your rosy cheeks, your little hands and feet and well, everything.

Smiling with your entire body

I love the way you reach for me as you fall asleep. It melts my heart. I also completely adore how you put your finger in your mouth as if you are thinking, just as you drift off into a deep sleep. You turn your wrist inward and even with all my efforts to fix this, it seems comfortable for you. You look so sweet and angelic as you sleep.

Deep in Dreamland

Perfection

You love music, especially my crazy songs that often include your name, mommy, daddy, and anything we might be doing at that moment. You smile mostly when I kiss your cheek. Sometimes you turn your head as if it is a game. You also love to have your feet kicked up, especially when you are eating. You use us as a footstool and I think it is so cute. You love fruit of all kinds and yougurt too. Five guys hamburgers are still a favorite. You also like sweets. You must get that from Daddy ;)

Your favorite toys are your tap bells, xylophone, musical garden, Neptune turtle, bumblebee, mozart music cube and all musical apps on the iPad. Did I mention you love music?  Your favorite toy this year- your tap bells:) (Thank you Mimi)

You currently wear pink and lavender glasses. We have a vision appointment in a few weeks and once we know more, we might add a third pair. You don't mind your glasses, however you have a few strong dilikes. You hate having your hair brushed, or your teeth. You dislike your reflux pill but strongly detest Benadryl (given only when sick). You are so smart. You hold it in your mouth, and just when we think you swallowed, it pours out of mouth. You also really dislike having you nose wiped.

In all my years and all my experience with children, I have never know such delight when you wake from a cat nap. You are happy, and you know happy, and that is all that matters in life. You are my littlest inspiration and my favorite thing in life. You are amazing.

After a Nap

Savannah Mae, thank you!! Thank you for being you and teaching me. Thank you for inspiring me as your mommy and as your number one advocate. I will always be here for you to help you and protect you along the way. Parenting you, a child with special needs, is a gift, the greatest, most precious gift. Maybe I was hesitant in the beginning that this journey would have true happiness and meaning, but now I can say with confidence, you have made me a better person and I can't thank you enough. Happy 1/2 birthday to my favorite little girl. I love you so much!!

Love, Mommy

Advocate for Life...

Dear Savannah Mae,

As our journey has progressed, I am trying to become more aware of your needs and less concerned about judgement. I guess it's about being the best advocate.  I know you best and I truly have the best understanding of you, not to mention best interest at heart.

Today, we attended a family party. You really don't care much for parties, especially indoor parties. It is a totally sensory overload for you. We went anyway because it was for your cousin. As family gathered around the table to sing Happy Birthday, I could feel your body becoming more overwhelmed. When I mean overwhelmed, I mean throwing your body back, hands up over your head, with tightness  running from your head to your toes. I kinda joked and said that you needed earmuffs for this setting. I do feel that something may be beneficial someday, maybe music and headphones? something to give you a calming sense when things are a bit crazy. I was not thrilled by the snarky remark that it was me who was overwhelmed, not you. Yes, it can be overwhelming to be in a place where you feel judged.

Comfy with Mommy.

I guess in these situations I feel defeated. Really?? Can someone who spends little time with you really know your needs? Maybe it's because I'm your mama bear? I am protective of you, very much so. I keep you with me when we are in these settings, holding you and trying to give you the calm that a mama can bring to their child. I know you. I know that you have never really been one who loves to be cuddled, held, passed from person to person. I know that you startle easily, it's been said that you may have a severe startle reflex and I wholeheartedly believe it. You startle at a sneeze, ice cubes from the fridge, a cough, motorcycle, and even when you don't anticipate conversation. I know that because of your low vision, this makes it hard. I do. It is different for you as a three year old and some of your disabilities are overlooked in settings such as this. Crazy thing is, you don't seem overwhelmed at school, or at least that's what your teacher says. I feel this is accurate considering most days, you come home with happy reports. Sandy is very in tune to your emotions and I am so proud of you for adjusting to your school environment.

Little Warrior in your Little Room

Speaking of school I am so happy with the class we chose. Inclusion is wonderful and I am really happy we chose this path for you. I had two, very happy reports this past week, which is a sign to me that you aren't overwhelmed. It's nice to feel you are included in activities with other children with and without special needs. You are the baby in the classroom and in the entire school. Everyone who knows you loves you. One thing I know for sure, "I will love you for always, and for everything that you are." To me, there is not a greater bond than loving you!!

I hope you feel better tomorrow. It has been almost three weeks of a yucky cold. Wednesday and Thursday of this week, you smiled at life the way I smile about you. I love you sweet pea.

Classic smile after a cat nap!!

Love, Mommy

Halloween and Visual Impairment...

Dear Savannah,

A lot of nights my mind wonders into a worrisome place. My worries are always more intense when you are not feeling well and we have had a very busy past eight weeks filled with appointments. Might I add, all appointments have led to great results. Spinal fluid is normal, brain imaging is your normal, no signs of seizure activity, and your hernia just needs to be watched, no surgery needed at this point. Tonight, you seem to be feeling better, but now it is in your chest.

Tonight, I feel a little down thinking about Halloween which is only two days away Tomorrow we have your Halloween party. Two years ago, I watched a happy toddler on her daddy's shoulders and I started to cry. I want you to experience Halloween the way I did as a child. Visual impairments are tough. We want to give you every opportunity to experience all things we know and love. I guess if I am being honest, I want you to see all the costumes, well, maybe not all, and I want you to truly get excited. Maybe in a few years, you will have a better understanding.

Salem Parade

Savannahbug and Mommy

Ladybug from head to toes:)

 I have been thinking about the day we found out you were legally blind. My heart sank knowing the challenges we would face as a family. However, even though we have never made eye contact, our hearts are fully connected. I love you more than anything on this planet, and I know you love me too. You have always been so excited by my voice or my touch, or my crazy songs I sing. Lately, you have been comforted in my arms and extra snugly. There is no better feeling than to have your body snuggled against mine. You are my little forever baby.

It took me a week or so to go through sad emotions. It is not that I never get sad now, I have just learned to embrace every single part of what makes you Savannah. You are my daughter and there will never be a disability in the world that will stop me from loving you or giving you everything you need. I just make appropriate adaptations for you. It is the most challenging and rewarding job and I can't count the times I praise you daily for being the best daughter ever. You truly are and I am so incredibly lucky. I love you pumpkin!!

A selfie from the pumpkin patch and the world's cutest pumpkin

Love, Mommy

Welcoming October...

Dear Savannah,

I'll admit, I love October. However, this past September was filled with appointments and I am so glad it is over. We had eight appointments, some routine follow-up, some new.

This past week was really tough. You were sedated for the first time since your surgery in June of 2011. You had full brain imaging and a lumbar puncture. It was awful and longer than expected. It was supposed to last for about 90 minutes and lasted for about 135 minutes. You developed stridor, again, so the time apart from me was about four hours. It was rough. Not to mention you have your mommies poor veins and it took them about six attempts before an IV was placed. Your poor fragile but resilient  body has more bruises than I would ever like to see. I say all this, but, I am truly thankful that your results are steady and the glucose in you spinal fluid is normal.

Next week, we will be going in for a 24 hour EEG because we are concerned that you might be having seizures. You have these staring spells followed by some spastic movements and then you cry. It's very predictable once this behavior starts. I pray that this is not the case. Mid October, we meet with a pediatric surgeon to discuss your hernia.

On a lighter note, we had your Hydrocephalus walk in September and that was a lot of fun. Our team grew with more family members. Lydia, Kelli, Daddy, and I have been walking for three years in a row. We continue to support the hydrocephalus association and we raised over $2000.

Mommy's little girl!!

Daddy's Little girl

Team Savannah Smiles

Kelli and Lydia

We also went to a pumpkin patch with Hannah over the weekend. I sure love her mommy. I can relate to her on so many levels and you girls make a very cute duo, Hannah and Savannah.

Hi!!

Hannah and Savannah

Savannah, you are so brave and so inspiring to me. I am so blessed to be your momma.

Love, Mommy

A Wedding Story

Dear Savannah,

This past weekend, Daddy and I attended a family wedding. From the very beginning, this wedding caused me a little heartache and a lot of anxiety. I debated whether or not to even go, because you were not considered to be a part of the wedding party. I asked for advice from many people and in the end, I decided I wouldn't want someone to try and dictate who I should have in my wedding party.

The truth is, you are the same relation to the bride as the flower girl and ring bearer.  You are also three, just like them.  Maybe it would be different in my family. We are not as close to the bride as your cousins, so I'll give her the benefit of the doubt. I am not even sure how we would have made it work, but I would have tried. As your mommy, I just want you to be included in everything. You're my passion, inclusion is my passion.

At the wedding, your cousins were dancing together and an overwhelming sense of hurt struck me. I wanted so bad for you to enjoy this too. I want you to know what dancing feels like on your two itty bitty feet. I just want you to have the same acceptance as the do. My heart was crushed and the tears were flowing. I stepped outside to collect my emotions.

You are an amazing little girl!! Each and everyday, I tell you this and smoother you with love. You are the sweetest and most beautiful little girl on the planet. I  know there will be a day when you are a part of a wedding and you will be the most beautiful girl in the room, just like always.

I love you so much, Sweet Savannah Mae. You are my favorite thing!!

What Does Beauty Mean to You??

Dear Savannah,

I often feel sad that you don't even know just how beautiful you are. However, I know that beauty truly comes from the heart. You are incredibly beautiful to me visually, however, your little sweet and feisty personality is even more beautiful. You are the definition of beauty and I am beyond grateful to call you my daughter.

Please watch this video and see how three individuals who are blind described beauty:)
http://www.buzzfeed.com/celestinomark/witnessing-how-the-blind-describe-beauty-might-change-the-wa%232yiyoov?s=mobile

Definition of Beauty

Beauty is swinging!!

I can only imagine you would describe our love for you as beauty, well, maybe a cheeseburger. Hopefully, someday, you will describe beauty to me. I love you little lovebug.


Love, Mommy

On the Eve of September 2014

Dear Savannah,

Well, it official. Summer is ending and we are relaxing this weekend enjoying our time as a family before you go back to school (sniff, sniff) and I go back to work.  We have had a very busy summer trying to adjust to school and a different schedule. On Thursday and Friday, we had the afternoons together as my work schedule was different. Most Thursdays, we would walk to the Farmer's market and enjoy our time together.

I launched a Hydrocephalus Awareness Tee shirt Campaign for your upcoming walk and I raised $558.  It was a bit stressful and I don't think I will be interested in doing it again but we are definitely spreading awareness, all because of you. You have inspired me in so many ways. I am not he same person I was before you came into my world and I am better because of you. I am more compassionate than ever and truly aware of the uniqueness in all of us.

Speaking of inspired, earlier this month we had the opportunity to meet Team Hoyt, a father son duo Dick and Rick Hoyt from Massachusetts. Rick has special needs like you and he alongside his father has competed in many athletic endeavors including marathons and triathlons. His dad will push him or pull him in a boat or cycle with him in a special seat. It is amazing. This past year was their last Boston Marathon. I was beyond thrilled to get photos with them.

Team Savannah to the left, Team Hoyt to the right

Team Hoyt + Savannah

We recently took another trip to Kansas to visit our family. I swear I feel like Super Mom lugging all of our needed gear. I never have a problem packing just one piece of luggage for the two of us but now we can no longer use your infant carrier (not that we should have last time either) because you are way too long. That leaves us with your toddler seat which probably weighs more than you and the fact that you cannot sit unassisted, we need it, not to mention you are way too squirmy to hold for an extended period. However, it is very worth our trip home.

All of our gear, nothing was checked

I love seeing the way Asher and Oliver interact with you. Oliver would bring toys to "Sabanna", and Asher has always adored his sweet girl. He once told me, "Baby Girls don't crawl." As he gets older, he will understand more and more about you but I know he will love you and adore you even more. Of course the rest of the family was happy we were visiting too. If only we were closer.

Mimi's Awesome Swing

We used the blow up boat bead as a safe place for you:)

Tomorrow starts a crazy, busy, month. We have an appointment every week and it looks like we will be adding another but I am still waiting to hear back from your pediatrician. We also are going to a adaptive equipment expo, a wedding, your walk, and a birthday party, not to mention it is almost Daddy's birthday. Busy month ahead...

It All Started With You

Dear Savannah,

Today was a very long day. My beautiful little alarm (you) woke me at 5am. You were very happy for the first few hours today. Just as I was leaving for work, you were snuggling back into bed for an hour before you needed to leave for school. I called Mrs. Busa and arranged for you to come an hour late so you could sleep a bit longer. Thankfully, that worked for Daddy too.

At pickup, I received my first ever cranky report. You were cranky at school today, normally you are always happy. Today, you vocalized complaints. You continued to be cranky. Thoughts start flooding my head: Are you just tired? Are you teething? Does your belly hurt? Your ears? Could you possibly have a headache? Is it your shunt? It is hard to know with you because you seem to have a high pain tolerance and you are not verbal. One thing is true, I live on a heightened alert because of your hydrocephalus.

Hydrocephalus Facts:
-One to two babies of every 1,000 are born with hydrocephalus, making it as common as Down        
  Syndrome and more common than Spina Bifida or brain tumors
-It is the most common reason for brain surgery in children
-There is no cure. The only effective treatments are surgical
-Hydrocephalus affects infants to elderly and all walks of life from every socioeconomic background
  (Just a few facts listed on the Hydrocephalus Association Website)

Savannah, I will be the first to admit, I had no idea the word hydrocephalus even existed. It took a short time for me to spell hydrocephalus. Many times (less important) medical professionals don't even know how to pronounce hydrocephalus. It all started with you. The word, meaning, understanding, fear, and the reason I walk for a cure. This year we will walk and honor you again.

In my additional efforts to raise money to find a cure, I designed a tee to raise hydrocephalus awareness. This idea stemmed from a fundraiser Kelle Hampton did to honor her daughter by supporting the Ndss and children of all abilities.

 All proceeds of my tee will go to the Hydrocephalus Association in honor of you sweet Savannah Mae.  I love the design.  Be YOUnique, refuse to sink. Always be YOU and never give up this fight.

If you would like to help support our walk, please click here. www.teespring.com/hydrocephalusawareness

Thank you for your support. youth sizes will be available 7/23

Hydrocephalus Walk 2014 Cambridge, Massachusetts

Dear Savannah,

It's the time again. We registered to walk and honor you, our sweet baby hydro lovebug. We will be walking again this September.

It is such a privledge to be your mommy. You have been my greatest teacher in life. I have learned so much in the past three years. Most importantly, unconditional love. I love you for everything that you are, and all that you will be. Thank you, Savannah Mae, for being the biggest blessing in my life. I love you to the moon and back!!

Love, Mommy

http://hawalk.kintera.org/faf/donorReg/mobileDonorPledge.asp?ievent=1098275&lis=1&kntae1098275=497AAC15679A4E4C8FB6283D416B1328&supId=390630377&team=0&scWidth=320&extSiteType=

Please follow the link if you would like to support us!! Any donation is greatly appreciated!! Thanks. Xoxo

Genetic Appointments Suck...

Dear Savannah,

This week, your tummy has been bothering you. You can't win. I feel that either your tummy is distended and hard or you are requiring multiple diaper changes. I changed you seven times on Monday. Tonight, I changed you four and Daddy changed you once. I was terrified to take a tubby with you tonight, however, nothing to report.

Sometimes, it is really hard to know what is going on. You don't seem to express too much discomfort when you are feeling a little yucky. It makes my mind go to all kinds of places. I wish I knew the answers.

Speaking of answers, yesterday, I scheduled an appointment with a geneticist. We have had testing done and even a micro-array, but we still don't have any answers. The appointment is still a few months away, however, I feel that it is important if it can help you. For example, since you were born, your skin tone has been very mottled. I worry that this could be something more, perhaps a heart issue, or it could just be you which is perfectly fine. I just want to be able to help if I can. I would like to rule things out.

This will be our forth geneticist. Personality clashes and a mom who knows what she wants = new doctor. The main problem has been that you are a "subject" to them. You are my precious daughter whom I love more than anything on the planet and its hard to have them look you over and point out things I love about you. I have also been given "papers" about potential things they wanted to test. One doctor handed papers to me and in the first paragraph was a life expectancy. REALLY? This was just something they wanted to test you for, not a diagnosis, and then the appointment ended. I never went back. Our third geneticist was at Boston Children's. I liked him. He seemed more compassionate and I thought he would be the one to help us figure out our little mystery.  I was completely disappointed that I have attempted at least five calls to take the next steps in testing and I have never heard back. I gave up and felt that he didn't deserve to know you. Anyhow, come your next appointment, I hope I like the doctor. She comes from the midwest so I hope she is friendly.

This past Monday, you went on your first field trip. I joined in on the fun. It was a lot of fun. We went to the New England Aquarium. You enjoyed the bright blue lights and the fish tanks. You also really enjoyed the bumpy bus ride. You touched a starfish, gross, I did too. You also touched a turtle.  They were very accommodating to you and your friends who were in the wheelchairs. They put the starfish and turtle into a separate container and brought them over for you to explore. Your teachers are all very nice.

The Wheels on the Bus make me happy!!

Massive Turtle

Fishies

I'm not so sure about this!!

I like turtles:) or you wanted to swim

Mommy is working on a very exciting project. Stay tuned....

On instagram: Junebugsmmma

We love weekends with Daddy

Dear Savannah,

We spent the weekend with Daddy. Once a month, Daddy has the weekend off and it is our favorite weekend of each month. We spent time with friends and family, but mostly, we just enjoyed our time as a family. You had your first "real" babysitter, Arielle, your speech therapist from EI. I knew you would be safe and receive lots of therapy and attention so I felt at ease when we left.

Before you were born, I took up golfing with Daddy. It is my favorite date so we went golfing today. Daddy says that I am a natural, however, I know the only thing I do well, is drive the ball. It is fun and I am very competitive so it pushes me to want to be better.

I am working on a project right now to kickoff fundraising for the hydrocephalus walk. I am very excited. I am also anxiously waiting for another project I wrote for a hair bow company. All my fun new projects stem from my love for you.

Tomorrow, I will be joining you, your teachers, and classmates for your first field trip. We are going to the New England Aquarium. Exciting!!

I love you lovebug!!

Love, Mommy

A Visit from Mimi

Dear Savannah,

A few weeks have passed since I last sat down to update you with our life.  We had a great visit with Mimi. We explored Salem, Portsmouth, NH and Kittery, ME. We did a lot of shopping. Mimi bought you a lot of new school clothes. It was great to have her here with us. I really needed her, just as I know you will always need me. We never outgrow our mommies.

Mimi  & Savannah

Beautiful Ladies

Mimi has always been a role model for me. She is one of the kindest people you will ever meet. I have learned a lot from her over the years, most important, motherhood. She has taught me so much about being a mother and she has helped me face my challenges throughout my life. She has been a crucial support system over the past few years, shedding tears over the phone when she could not be here to support me physically, she has always been here for me emotionally. I will always be here for you too, sweet Savannah. You have taught our family so much more than you will ever know. I am a better person because of you.

After I dropped Mimi at the airpot, I dropped you at school, for FIVE hours. I wasn't sure what to do with myself because I was on vacation at work.  For the first time, in over three years, I walked into a empty house and it was weird. Thankfully, Kate you therapist from EI called on my way back and dropped by for a short visit. It was nice to see her. After she left, I debated, pick Savannah up before lunch, or go get a pedicure. Surprisingly, I left you at school and decided to get a pedicure. It was good for me to try and get in this routine. It i , however, very weird to look in my mirror to an empty car seat. We were both happy to see each other a pickup. As much as I miss you, I have a huge sense of pride(a little sadness too) to say my daughter goes to school.

Kate and you on your last EI day.

Unfortunately, you have been exposed to new germs and you have been sick for the past week. Finally, you are smiling again and feeling better. You even thought you would share this set of germs with Mommy and Daddy. Better us than you and better me than Daddy because he is a Type 1 diabetic and it is harder on his immune system than mine. I do think you will be up for school Tuesday, as you begin the summer session.

We went to the pool and the beach this last week. Like Mommy, you only like warm water and don't care for the cold salty Atlantic ocean. I put your feet in and you quickly removed them. It was a great opportunity to put you in my favorite new bathing suit. I call you my country bumpkin when you are wearing it. Red gingham and ruffles is all Kansas in my mind. I love it and I love you to the moon and back...

My Country Bumpkin

Love, Mommy

Interview with Daddy, on Fatherhood and Special Needs

Dear Savannah,

Mimi is on her way to visit you and to give me a little extra emotional support while we are going through this transition. Of course, her flight is delayed, really delayed, so I took the opportunity to interview Daddy. Tomorrow is Father's Day, Daddy's fourth to be exact. His first Father's Day you were still in the NICU. I remember trying to find a gift for him in the MGH gift shop. However, I can't remember what, if anything I decided on. He doesn't remember either.

Daddy has continued to love you and help you grow. It is amazing how you have brought us so much closer. I fall in love with him more and more watching him be your daddy.

Here are the questions I asked along with his responses:

What do you enjoy most about being a daddy?
-I enjoy all of her smiles. I love watching her develop because she is doing so good. It also feels really good to be needed you know? (Yes, I agree. It feels really good to be needed)

What did you imagine when you learned you were going to be a dad?
_I imagined chasing Savannah all around at this point. I pictured a more independent child. At the same time, all I really imagined was loving and caring for Savannah. (He is doing a good job :))

What is your favorite thing to do with Savannah?
-I enjoy getting her out of the tubby and rubbing her down with lotion. I like to swing her. I also enjoy playing blocks and bells with her. I even enjoy putting her in her stander. (Daddy likes to play blocks because he gets to use his putter to pick them up. You knock them off your light box and Daddy uses his putter to gather them. It is very cute to watch.)

What is your least favorite thing to do with Savannah?
-Nothing really. Everything I do gives her some enjoyment. I really used to hate to stretch her neck. (We used to stretch your neck multiple times a day because of your torticollis. Physical therapy has helped you so much.)

What do you enjoy most about having a special needs child?
-She doesn't talk back(laughing). She is really just pure enjoyment.(Yes, you are Savannah Mae.)

What are the challenges you think we will face raising a daughter with special needs?
-Challenges? Maybe future worries about what Savannah will need. I worry about how she will be treated(me, too) and how I will react to those who are cruel.( Me, too Daddy!!)

Do you feel overwhelmed?
-Not really. If she was more medically fragile, maybe I would feel overwhelmed. (Mommy feels overwhelmed at times, but I am very thankful you have been so healthy)

What do you love about Savannah Mae?
-EVERYTHING!! (100%agree) I love her personality. She is happy, resillant, and feisty. (He meant to add beautiful and sweet, too)

As you can see, you are a lucky girl. Your daddy loves you very much. We both love you and adore you. Daddy whistles a lot to make you happy. He also sings toddler tunes that get stuck in his head when you are asleep. It's pretty cute.

Papa Don has been an amazing father to me. I still need him. He tells me to keep my chin up when I'm feeling stressed and always has the best advice. He is an amazing cook, cleaner and gardener. He is an amazing Papa, too.

We never had the chance to meet Papa James. He went to heaven when daddy was a teenager. I think Daddy is a lot like him, from all the stories he has shared.

Tomorrow, we will celebrate Daddy and spend the day with Mimi. Im excited to see her. I know she is excited to see you too. I love you sweet girl.

Love, Mommy

We Made It...

Dear Savannah,

We made it through the week!! It was an emotional week, but we both survived. I can't even begin to tell you how proud I am. You not only started school, but you graduated from the infant toddler program at Perkins.

On Monday and Tuesday, because I couldn't resist, I joined you and your new friends at school. It is amazing. It is a class with many disabled peers and a few peer models. First, I am very impressed with the patience of the peer models, because sometimes, special kiddos need a little more attention.  At circle, a little girl took a while to warm up to you, but then kept requesting that you have another turn. It filled my heart with hope. After gym, a sweet little boy held the door for us and looked back into the room to make sure that nobody was left behind.

Your First Day of School June 9. 2014

Tuesday, it was another boy that melted my heart. He was patting you on your head. At another point, I watched him go by and rub another little guy (seated in his chair) like a true  friend. He has a very caring spirit.  Another friend who happens to be blind and has the biggest personality, was very concerned when you were crying.

Ultimately, this is why I gave up my fight at Perkins. I want you to be around peer models. I want you to hear typical children playing and I want children to play with you. It was truly amazing to watch and I am very grateful that your peers will learn to accept you as you. They treat everyone the same. I am very thankful their parents made the choice to send them to a collaborative school. I was told there is a waiting list to be a peer model. Pretty amazing.

Overall, this transition went smooth. To be honest, I was a mess on Monday, building up anxiety to leave you on Tuesday, cried a little on Wednesday, but we made it. Your teacher and the social worker updated me with two emails, and four photos to help make it a little easier. I was so anxious to pick you up. I truly missed seeing your sweet little face.

Just as one chapter was beginning, another was ending. Thursday, you graduated from the infant toddler program at Perkins School for the Blind. It was bittersweet. I am extremely proud of your growth over the last ten months but very sad to leave a place where I feel at home. We have both formed new friendships that I hope will last forever. It was a place where you played with some really amazing children and some really amazing volunteers. It was a place where I first could relate to parents raising a child with a visual impairment and other disabilities. I gained so much strength and knowledge and support that I am sad to leave it behind. I have already invited the whole group over for a play date next week. It will be a crowded house, but fun. I'll do my best to keep in touch.

We are proud of you!! Daddy came too, he was the photographer. 

Add caption

Savannah Mae, you are the sweetest little girl. Thank you for being my daughter and teaching me so much about life. You are the best teacher I have ever had and you are only three. I really feel blessed to be your mommy.

I love you my little love bucket!!

Love, Mommy

At three, you can...

Dear Savannah,

At three years, you amaze me more everyday. Your determination is like nothing I have ever known. It is true, you are working hard at doing things that come easy to most of your peers. However, your progress is slow and steady and I am very proud of the things you can do.

You are still very much like an infant in some ways. You are getting stronger and stronger, but still need extra love. Mealtime is an example. You do a fabulous job eating, however, I cut up all your food into bite size pieces and place each and everyone in your mouth. I don't mind helping you at all, it just takes time. Lately, I have been making ribs and you love them. My little Boston bean showing preference to my Kansas roots. I love it.

Cute Romper 

Sometimes, on the weekends mainly, I feel overwhelmed. Overwhelmed with how to be a good mommy and how to keep up with our home. I admire those who can do both. Often, I wish I was obsessive about cleaning, better yet, if Daddy had the clean gene. Well, we don't. It's ok. We don't live dirty, we just need to hire a cleaner and someone who will help us donate things that take up space. I think this is just life, but I often see picture perfect homes with children living in them and I often wonder, how?

In case you are wondering, at three, you are rolling all the time, lifting your head up more and more. You can sit independent for an average of ten seconds, but I have counted up to thirty. You still need hello with feeding but you eat like a grown man. You drink from a bottle most often, bit tolerate a nosy cup too I hope you will learn how to drink from a straw, but at this point , you don't understand a straw and you wan immediate gratification so I most often give you a bottle of coconut milk. You tolerate your stander for two or more hours a day, atleast when time allows.  You are standing with assistance almost every chance you get. I even see this when trying to put you down on the floor, in your car seat, your stroller, and the newest, your swing. It makes my heart smile to see this. It is amazing. You are a whopping 22.1 lbs and 33 inches of pure beauty!!

Rolling of the blanket

Over the past month or so, we have seen some "behavior" in the tub that we have been concerned about. It seems as if your body loses control. You are alert so we are convinced that you are not having a seizure. It's just not you. You have always loved the water.

Speaking of your tubby, I still give you a bath every night. By that I mean, I hop I. The tub and hold you so you can sit. You love to kick and splash. We encourage you to splash outside the tub, probably something most parents don't encourage but we know you are having fun and gaining strength. It's a little PT, OT, and aqua therapy all in one. Last night, you covered your daddy with water, along with our floor. Good job, sweet pea!!

Love, Mommy