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. 

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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