Dear Savannah,
I have neglected to update my love for you over the past few months. The holidays are crazy. It's shop till you drop and then back up and fly. This year, we celebrated Christmas with Daddy. He came to Kansas with us and you demonstrated your A+ travel skills. It was so nice to be a family at Christmas.
Exciting news- you are a future flower girl. Tyler and Lindsay presented us with a gift and it was a tee shirt for your duty as Petal Patrol. My heart was so thankful I cried. Lindsay is already an aunt to you but I'm so excited for this upcoming event. Both Tyler and Lindsay love you like crazy. Asher and Oliver are the Ring Security. Lindsay and Tyler's other little love, Ruthie, is also a part of the petal patrol and will be joining (maybe leading) your patrol.
This week has been nuts for us. Daddy took over your position and needed extra care. He hasn't been feeling well for months, and finally after his sugars crashing and my concern for his diabetes, he went to the doctor. He was told he had walking pneumonia, from his chronic cough, until his legs (he has chicken legs like Papa Don) started swelling and he gained 25 lbs in one month. That is when his heart became a concern.
Daddy has had numerous tests including an echo cardiogram which showed us the production rate in his heart is down 50%. Savannah, I cried for you, I cried for me, I cried for your Nana, all in the most screechy, ugly way this week. I was so concerned your Daddy was dying and it hurt me in every way. I couldn't complete a simple task. I walked into the room to get your pajamas and came back with a diaper. I was mentally and physically drained left with the questioning why? Daddy and I both love you for who you are and everything you will be. That will never change. The thought of losing you is a pain I can't describe. Add Daddy to the equation and I feel weak. We need him. We need you. And we need me, too. I'm the glue, the pit bull, (as your dad describes) that makes our family run. I go after the doctors with fierce passion and eminence love.
You are the ultimate reason I fight. You deserve everything I can ever give you. I see that you love and admire Daddy, even if you don't physically see him. You need him, I need him, and we both love him. After several hours in the ER, the week ended with "hopefully" a viral infection that attacked his heart and no real heart issue. You went to a hematologist with no "true" concern but unresolved issues. So all is good. You are sleeping, Daddy is sleeping, and I am trying to digest this week.
January has been rough. Let's make the rest of the year a breeze. I love you my Sweet Savannah Mae!!
Love, Mommy
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.
Friday, January 16, 2015
Sunday, November 23, 2014
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.
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.
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.
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
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
Saturday, November 15, 2014
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.
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.
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.
Love, Mommy
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
Wednesday, October 29, 2014
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.
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!!
Love, Mommy
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
Wednesday, October 1, 2014
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.
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.
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!! |
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| Hannah and Savannah Savannah, you are so brave and so inspiring to me. I am so blessed to be your momma. Love, Mommy |
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