Tuesday, October 23, 2012

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

Thursday, October 4, 2012

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

Friday, September 14, 2012

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

Sunday, September 9, 2012

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

Monday, September 3, 2012

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


Wednesday, June 27, 2012

The "BIG" Little Room

Dear, Savannah,

   You were diagnosed with Cortical Visual Impairment back in February. With this, you are considered legally blind and you process your vision much different than Daddy and me. You have trouble tracking objects, if you can track them at all. However, your vision has improved so much in the last six months. You watch me move if I walk past you while you are on the floor. You also love the Ipad. You are even giving longer glimpses at mommy :). I sure hope someday you can see how beautiful you are.

   With your vision diagnosis, we receive vision therapy once a week. This is a therapy that is not stressful because you don't feel as if you are tortured like in physical therapy, even though I know your PT Keri is helping you and is wonderful. Visual activity is tiring for you. It is not as tiring as physical therapy though. You have had a little room for the past few months. Basically, it is a solid colored box (red, yellow,blue, black) with plexiglass on the top so you can see in and an opening for your feet/body to hang out. A cube missing two pieces, the bottom and the end. Small holes are drilled in the plexiglass to allow for toys to hang by large washers. These toys are solid colored and different textures to allow you to explore. For example, it has a large green jingle bell, a yellow flower, and a silver mylar ballon. These are all for purposes of play and helping stimulate your vision while encouraging new sounds and tactile play while reaching. This is a service we receive from Perkins School for the Blind.
You in your light box.

Sweet pea, this is not how you are supposed to use this;)

   Sometimes you are so silly. Just as you started using this therapy tool, you started rolling, a lot. You would roll into the side and get stuck. You would also stay on her belly, silly girl. It doesn't help you when you are on your belly. Monday, we were given a new little room and there is nothing little about it. It is a BIG little room. I can almost sit upright in this room. Now, you can roll again, in your BIG little room. Make your mommy proud. Keep rolling and we can get an even bigger little room.



Love, Mommy

Saturday, June 23, 2012

Thirteen months!!

Dear Savannah,

Today, Savannah Mae, you are thirteen months. Time flies. We have been very busy this past month, very busy this week. Yesterday marks the anniversary of your shunt placement surgery. We are blessed that we have not had any complications thus far and no additional hospital time, and that makes me HAPPY :) I pray that I can continue to say this every year.

We spent the weekend celebrating Daddy as your daddy.  Last year, you were still in the hospital so it was great to spend the day with our family. We started with church and out to breakfast where we gave you your first taste of pancakes and syrup. After breakfast, we went and visited Papa James' grave, something Mommy had never done before. I wish we would have had the chance to know him.  I think Daddy must be a lot like his father. We ended with a nice dinner after a very relaxing day.

Monday, we had a visit with your neurologist.  It is one of my least favorite appointments, next to genetics. We did not receive any new answers to why you have global delays. I really didn't expect any new updates because as we have learned, it's a wait and see world we live in. If you ask me, you are perfect. You are just taking your time and eventually you will get there. Wednesday you had a g.i. appointment and as for now, you no longer need to be seen. You are off your reflux medicine and we are free and clear. :) Let's hope things stay this way.

Savannah, you had a few firsts this week. You put her feet in the ocean, although I'm not so sure you enjoyed it. You also went swimming for the first time. I knew you would like this and you did. You have always loved your bath. This week, I  dressed you adorable all week. I have been waiting to dress you in the cute clothes from Mimi's store that you got for your birthday. You are so unbelivable cute.  I love you to pieces!!!!
Little Lovebug Swimming

Love, Mommy
New outfit from Mimi's 

Wednesday, May 23, 2012

Birthday Girl!!

Dear Savannah,

Today is your first birthday!! I truly can't believe you are one. It seems as if it was only a few months ago that you came into this world. Aunt Lindy asked me a question this weekend. She said "What do you think of most in Savannah's first year?" The answer I gave her was all the time in the hospital, and that was only six of the past fifty-two weeks. It was a very scary time for us and maybe someday I will forget that painful  part of our journey, but for now, I still have a very vivid image of all the hard things you went through in your first days of life. The fact that you have overcome many obstacles and you are here today brings a smile to my face everyday. You really are the sweetest baby.
Your photo for you 1st birthday invite

Savannah we spent last few days in Kansas celebrating your first birthday. We had so much fun visiting and playing with cousins Asher and Oliver. Asher adores you and calls you his "sweet girl". He really loves you. Oliver wanted to play with your green ball and crawl over you.  It was so nice for my family to enjoy you for a few days. You are the little princess when we go and stay at Mimi's.
Aww, you and Ollie match

Now I know you are a year old  and many people ask if you are starting to walk and be a little terror. The answer to that is no, not at all. As far as milestones, you learned to roll in April. It was such a great milestone to see you accomplish. Crazy thing is, you started rolling at four months for about a month and then you just quit.  Now you are a little rolling machine. We help youto sit, but I hope that this is a goal we can help you accomplish by the end of the summer. You sit well with support but  still lack solid head control, although this too is a huge improvement over the last few months. I know in time you will meet milestones and I will wait patiently and help you along the way. You are feisty and have always been a fighter. I have no doubt that your feistiness will help you along your journey.

We enjoyed our day spending the day with you, our little one year old who is still so baby-like. We took you out to dinner, (you had nasty formula because mommy finally quit pumping) and treated you to ice cream on the way home. You really like ice cream and you also really likes sno-cones. I will continue to give you treats you can eat :) It's fun to see your reaction. So, Happy Birthday to the sweetest, most beautiful little girl I know!! I love you so much and look forward to all of your accomplishments in the upcoming year!!

I love you!!

Love, Mommy
Love this photo


Sunday, May 13, 2012

My 1st Mother's Day

Dear Savannah,

   Today is Mother's Day. Parenting is tough work and all mommies deserve a day of appreciation. Now, I know you didn't say how much you appreciate me, but I also understand you are not capable of doing this yet. I do not know an eleven month old that can do this. You showed me in other ways that you really do appreciate me.

You slept in until 9:00am, granted you didn't go to sleep until 12am, but we had an exciting night with a visit from the local fire department because our alarms like to go off. This time it took three firefighters and Daddy before the problem was fixed. It is either a faulty electrical problem or we need one new alarm. Hopefully, we figure this out soon!!

You have been extra snuggly today. Usually you are a little wiggle worm and won't sit still. Today, you snuggled into my shoulder on multiple occasions. I LOVE when you do this. Please keep snuggling with Mommy.

You also found you voice on Friday and have been a chatterbox ever since. You are not saying any real words, but you have a new sound and seem to enjoy listening to yourself. This is great progress and I can't wait for your therapists to see you this week. I also can't wait to see our family. One of my favorite things to do is show you off. I am so proud to all you my little girl.

I know you love me and appreciate me. Maybe sometimes I can annoy you when I run my fingers through your hair while you sleep or when I use my high pitch voice to try and make you smile. I have good intentions Savannah. I have never loved anything more than I love you!! I am so blessed that God chose me to be your mommy!! I love you, angel.

Love, Mommy

Sunday, May 6, 2012

Wake Up

Dear Savannah,

So I have decided you take after Aunt Lindy and you are a little night owl. You have always been, but last night you really wanted to hang out with Mommy and Daddy so you did not even close your eyes until almost 1a.m. I didn't mind too much knowing you would probably sleep in. Well, at 6am we had a wake up call but it was not you. Our fire alarms went off for the second time this week. It looks like we need to change all the batteries. Needless to say, we were all awake bright and early.

After breakfast and a little play time with Daddy, we all went back to sleep. The rest of the day was pretty normal. Daddy went to work and you and I played and napped. You had a mini photo shoot for your first birthday invitations. You are such a little beauty.

You tried chicken for the first time today. I make all your baby food so I was able to puree it to the right consistency and add squash and apples. It was a hit. So far Savannah, you are a great little eater and have tried a very large variety of food. You like avocados, all fruit, carrots, squash, prunes, and so much more. You don't care for white potatoes, although you love sweet potatoes. Daddy says you have a sweet tooth like Mommy.:)Now if we could only get you to drink more.

I love you sweet girl!

Love, Mommy

Saturday, May 5, 2012

Hello

If you are here visiting my blog, then I have done something right. My goal for writing this blog is to give friends and family and other parents raising a child with disabilities a glimpse into our life through writing to Savannah, whom I dedicate this blog to. We live a very busy life.
Savannah is a few weeks shy of her first birthday. She is the sweetest baby I have ever known, and I have helped raise a few along the way:) I am so blessed to be the mother of this sweet baby girl, My Sweet Savannah Mae.. I plan to recap our journey thus far. She truly is a blessing.