Think Pink

 Dear Savannah,

   I have been doing a lot of thinking lately about my pregnancy and my little miracle who is currently snoring right next to me. Yes, sweet baby of mine, you snore. Last week, I started the book Bloom, by Kelle Hampton. I was finished in three days, record time for a mom raising her own child with special needs who has not picked up a book since you were born. Kelle, well she is amazing. Her memoir had me in tears on several occasions. Maybe because I could relate in some ways, or maybe because she is so inspiring and I want I be more, as a mother and as a person.

   Our journey started much different. In fact, I woke from a dream on October 2, 2010 that I was pregnant with a little girl. Nothing was out of the ordinary with my cycle but I went ahead and took a pregnancy test, and yes, there were two, pink, faint lines so I went right in for a blood test. 

   I never wanted to be the mom to say that I didn't plan my pregnancy. I would be lying if I told you any different. While some pregnancies are planned, I would imagine that many more are not. Anyway, not really what I want to tell you either but I had kicked Daddy out and for the past five nights, I was living alone. You see, we never did well together when we would drink. We would drink too much and it never ended well. I had enough, and thought it was time to move on. Little did I know that two pink lines would change us into much more responsible adults and two people that really loved each other and would love you even more. This change started instantly and we remain this way today. It's crazy how much better a relationship works without the influence of Jack Daniels.

   On my way to the doctor to confirm a pregnancy, I was in tears talking to my bestie Kelli. She calmed me down for a short time. As I was sitting in the office, I felt very overwhelmed and scared that I might in fact be pregnant.  I had a young male doctor who confirmed the pregnancy but thought the blood counts were low. I had told him I had some cramping the night before so he sent me for my first, of numerous ultrasounds. I left the office and burst into tears calling Kelli again, who offered to meet me at the hospital. At first I said yes, and then I changed my mind. I knew there was nothing she could do and that I would be just fine. So, before my phone died, I told her I would call her later.  I had so many mixed emotions. I was just really scared to take on such a huge responsibility in the beginning. I was also very excited to know that I would be a mommy, something I have always dreamed of. Never think for a minute that I didn't want you. I was just not expecting to have a child before I was married. I loved you from the day the doctors told me I was expecting.

   My ultrasound, as I recall, showed nothing. They thought maybe it was too early to see you, guessing I was about five weeks along. I was told to wait for the counts to get higher and then I'd have more blood work. This was a Saturday and I was scheduled to go back Tuesday, which felt so far away.

   In the mean time, I called Kelli back and she offered all the support she could give. She remains one of the first people I turn to in a crisis. Normally, I would call Mimi or Aunt Lindy in a crisis too, but I was nervous about the judgements because Daddy and I weren't married. I then called Daddy, and asked him to come over to talk that evening. He agreed.

   Daddy came over after work. I told him about my dream and that the doctor confirmed two pink lines. He was very supportive of the news and I think very excited from the beginning. We had no idea at the time if you were a little girl or a boy but because of my dream, I just knew in my heart that this little baby growing inside, would in fact be a girl. Daddy even aksed, "What would we name our litte girl?" I love that we were blessed with all the innocence of the color pink. You my love, you are my everything.

Love, Mommy

A rainy success

Dear, Savannah,

   This past Sunday was the 5th annual Hydrocephalus Walk in Cambridge, Massachusetts. Despite the rainy chilled weather, 250 came out to walk. Team Savannah Smiles had nine members honoring you sweet baby girl:) It makes me want to be a part of something bigger to help all families who are affected by hydrocephalus.

   Of the 250 walkers, twenty, including you live with hydrocephalus. It was great to see so many support systems, including my dear team. Papa Don, Uncle T, and Aunt Lindy also showed support by sending Mommy texts telling me they were proud and anxiously awaiting pictures from our walk. It was a special day . I only had hoped for better weather so we would have been able to connect with more families and to share stories with each other. We raised more than $3500 as a team. All that money is to show support for you Savannah Mae. The grand total will come next month when donations are no longer collected and I will be happy to share the amount:)

I am looking forward to the weekend and spending time with you and Daddy. We are planning on taking you downtown tomorrow for the haunted happening festivities, aka trick or treat with the mayor. It should be a fun weekend!!

I love you, lovebug.

Love, Mommy

Raising Awareness for Hydrocephalus

Dear Savannah,

  September is hydrocephalus awareness month so I have set out with a goal, to raise awareness. I have been posting several statistics on my Facebook page along with fundraising for the upcoming hydrocephalus walk in Cambridge. I love that we can be a small part of something so big. This is all for you lovebug. You are teaching me all kinds of things. I sure do love you.

In this process, I created a team to honor you. Daddy and I are both part of the team. My good friends Kelli and Heather and their children, along with Mimi, will be walking too.  For some reason, your Aunt Eileen decided to go against our team by not joining ours but creating her own page and recruiting Daddy's aunts, mom, and cousins for donations. She was unaware of the walk before I started raising awareness and I am extremely upset. Daddy and I are happy that funds are being raised for hydrocephalus, we are both just very hurt by the lack of support from his family.

I know this wasn't  done to hurt you or Daddy, but rather to hurt me. I don't have the best relationship with Eileen because of the lack of understanding and support since your birth. On the day of your surgery, I didn't want any visitors. Handing you over to a brain surgeon was the scariest thing I have ever faced in my life. I was trusting him with the most precious thing on earth, you. I wanted to go back to our room and cry, with just Daddy. I needed him and if we had visitors, I wouldn't have him.  I upset them by saying "no" to the idea of visitors. This is one place it started. I had also had an issue with Eileen because I was very upset with her for posting a picture of you on facebook (before I even had the chance) something I had been waiting for nine months to do. While I understand the pride in becoming an aunt, common courtesy is to ask permission to post a photo of a child that is not yours. I wasn't nice about it, nor should I have been, especially the second time she did this (within a few weeks) after Daddy asked her not too. So, needless to say we don't get along and everyone else just follows suit. They all love you but they do not understand how to support us as a family.

Anyway, back to the walk, our original go was $750 and we have raised more that $2300. I have great family and friends supporting us and this cause and we have had many generous donors that we don't personally know by spreading the word and raising awareness.  My heart is full from doing something for you, in hopes that someday there will be a cure. Acts of kindness are so heart warming!!

I want you to know I love you so, so, much.

Love, Mommy

A Productive Week

Dear Savannah,

   Last week was a bit crazy and not so typical, but very productive. Monday was a holiday, which was my last day off following a long vacation. The B's spent almost two weeks in France. They had an amazing time and brought you a souviner, a French ladybug.

   Tuesday was a full day of work for us. After we picked the girls up from orientation at their new school, we went out for lunch. I let them chose anywhere, so we found ourselves at Buffalo Wild Wings. I thought it was an odd choice for children who rarely eat chicken without complaining, but they all ordered wings and everyone was happy.

   Wednesday started with the craziness. You had your Early Intervention evaluation. It is a standardized test that made me want to burst into tears. It is a test not made for the visually impaired, so it was really hard to have them challenge you in ways that are not physically able to be challenged. I know it is for the purposes of you receiving these services for another year, I just wish there was another solution to qualify. Although I know you are globally delayed, it just felt like a slap in the face. I stayed very strong, until the four evaluating you left and then I burst into tears, holding you a little tighter.

   Thursday I met with three of the four lovely ladies that provide her with these services. Currently, you meet with Kate who is a social worker who combines all of your therapies. She also serves as my therapist and let's me vent all the outside drama that surrounds me once a week. Not really my therapist, but she is great. You also meet with Keri, a physical therapist once a week and a feeding/speech therapist, Arielle once a month. We updated your goals and things I would like to help you accomplish over the next year. They range from sitting independently to holding a sippy cup or bottle. The only therapist we were missing was Mary, your vision teacher. We are excited to see her tomorrow because it has been many weeks. Mary comes from Perkins School for the Blind and they have the month of August off. We see her once a week as well, so yes we are very busy.

   Friday was a good day. I took you to the FRC clinic where you were evaluated by a team of doctors. I went in there with one goal I wanted to see happen and I left one very happy momma. You have not learned how to bear any weight on your legs, rarely I should say. You kick and do what Daddy and I call a "ka-boom',  but you never want to stand, even with help. I wanted to walk away with some  type of device that could help you. I am thrilled to say, you will be getting a Squiggle stander to help your hip development and to get you standing. This will also require that you gets afo's for support during standing. Several months ago I hated the idea of all this. I never felt you would need any of these devices to help.  Maybe I just felt as if someday you would start walking without learning to use your body. Who knows what I was thinking. I know you do in fact need more help than I am physically able to give you and I am very pleased with the outcome of this appointment. Let's just say, we had a very productive week!! I love you sweet pea!!

Love, Mommy

Iphone makes it easy :)

 Dear Savannah,

  Finally, I have figured out how to blog via iPhone. This means I will probably write you a lot more about our life. I just love everything about you and I want to be able to share this with you when you have a better understanding.  I just don't sit in front of a computer much and because cellular phones are so smart, they do everything. So, be prepared for more letters to come.

We have had a busy summer. I have been off from work the past two weeks so you and I spent most of our time in Kansas with family. We sure do miss them. You and cousin Oliver were baptized together which was very special. You both looked so angelic in your christening outfits. Apparently, getting baptized is exhausting!! I think this is one of my favorite photos ever. You two are so sweet and precious.

   Lately, you have been up in the middle of the night for more than two hours.  You are very sweet but also very exhausting at times. This means, I should probably get to bed since I work a full day tomorrow. The B's start back to school on Wednesday. It sure was nice to spend so much time off with you, even if we missed Daddy. Sweet dreams, lovebug.

Love, Mommy