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. 

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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

A New Chapter...

Dear Savannah,

Tomorrow, we will be starting a new chapter of our journey. You are starting school. Thankfully, I will be able to go with you and help during this transition for a few days. I will meet your teachers and therapists and by mid week, I will learn to be a big girl and let go so you can be a big girl too. I know this is what you need, so I keep reminding myself, I am doing this for your growth and learning

To be honest, to say this is hard is a complete understatement. I have been a complete emotional wreck during the past few months, especially this past week. I have had the joy of caring for you full-time every single day since you were born. You are my little buddy. Your school day will be five hours, more time than we have spent apart at this point. Crazy, huh? I thoroughly enjoy being your mommy.

Your my little buddy

We have been preparing for this day in the last five months. I was fighting so hard to go to Perkins School for the Blind, until I had a change of heart. Trust me, Perkins is amazing. The staff, resources, and everything is amazing. However, we went for a school day as part of the admissions process and I left feeling sad. I was sad because the other children were unable to come and talk you. I left knowing that if I wasn't open to our placement on the Northshore, then I would be depriving you from peer interaction. So Mommy decided that an integrated class room is something I really wanted for you. You will be in a classroom with typical and disabled peers. The drive to Perkins would be an hour or more and your new school is less than fifteen minutes. The director at your new school is the reason we had Mary, our TVI, so this puts me at ease too. However, I am still anxious.

You'll do great at school! After all, you are a superhero!!

I am trying to pinpoint this anxiety. I feel that every mother has this feeling, but I feel that it may be a bit more intense for me. I guess because at this point, I know you wont understand that I will be back for you each and every day. I can't just tell you and you will understand, however, I will tell you everyday. Maybe it is because you don't see me? Leaving a child who doesn't see or talk is different from those who do. Mommy just needs to put on her big girl pants and know that you will be in good hands.

Preparing for school, I first bought you an apple dress for your first day. I also made a matching bow, go figure. Today, I searched for objects that could represent school and going home and I am still struggling a bit finding the perfect toys.  I promise to figure this out soon. I also bought you a new bag to carry all your stuff back and forth. I did buy a ladybug backpack, but because you need more room, I decided on another bag. It's crazy to think you are going to school.

We had a nice weekend. We spent time with the Allison's Friday and Saturday. You danced with Nicolas which was so cute. I held you up and he held your arms. It was so sweet. Today, you were able to enjoy your ladybug pool in your new country bumpkin bathing suit. You are stunning in red. Tonight, Daddy and I took you out for ice cream. Daddy chose coffee ice cream and I chose a twist, which you ate 2/3 of and still wanted more. I think it is about time to order you your own.

Sweet Savannah Mae, I really hope you love school. I hope we see great progress . Please never forget that I love you more than anything and together, we will get through this change. Sleep tight. You will need the energy tomorrow. I love you to the moon and back!!!

Love,
Mommy