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...