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!!
Sweet Savannah Mae is a journal of letters to my daughter, Savannah Mae, about her journey through life with Cortical Visual Impairment, Hydrocephalus, and more importantly, LOVE.
Thursday, September 18, 2014
Monday, September 8, 2014
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
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
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
Sunday, August 31, 2014
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.
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.
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.
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...
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...
Tuesday, July 22, 2014
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
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
Friday, July 18, 2014
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
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
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