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
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, September 14, 2012
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
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
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.
Love, Mommy
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