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| I saw this on Facebook today and it is so very true! Had to share it! |
Wednesday, February 27, 2013
Sunday, February 24, 2013
Rasing an Amazingly Special Child
If you would have asked me when I started the adoption journey what my vision of my daughter was....you would have gotten a very different picture. I planned to adopt a healthy toddler....a child who would have dance lessons and play soccer. You know, all those little things you dream of your child doing. That dream changed with one picture of a beautiful brown haired, brown eyed girl with a smile that lit up that picture.
It has been a journey that has allowed me to grow in ways I never dreamed were possible and I am a better person because of being Maria's mom. Over the past 8 months (minus a few days), I have had many people tell me how amazing or extraordinary I am. Let me tell you a secret....I'm not, Maria is the amazing and extraordinary one. I realize that many of the people who have said these things to me are most likely saying them because they cannot imagine parenting a child with a physical disability. It is not a choice they would choose to make. And it is not a choice that anyone should take lightly.
So, let me tell you a little about life with my fiercely independent daughter. Yeah, the child does not usually want help and almost always refuses to ask for help....unless she knows she is unable to do it or is highly frustrated. In fact one of the speech pathologist I work with taught the school nurse and me the sign for "help" which is simple doing a thumbs up with one hand and using your other hand to lift/push it up. Maria picked it up quickly and then made a thumbs down sign and pushed it down while saying "No, help". Yup, this is what I deal with at times. At the same time friends are amazed to learn that Maria does all her bath rooming on her own. For those who do not know much about Spina Bifida....most individuals with SB have no or little control over their bladder and bowels. Due to this Maria does currently wear pullups....we will be starting a cathing program this summer. Maria changes herself completely on her own. Maria also has clubbed feet and almost no feeling in her right leg. She really cannot walk without her braces and sticks. She transfers herself from the toilet to the bathtub/shower on her own. She showers on her own too (she had help at the doma with her bathrooming, so these are skills she really picked up within the first 2 months home)....and yes, she is at the age where she doesn't always want to shower daily. The only times I usually have to help her with bathrooming is if we spend the night somewhere else and she has to transfer herself to the tub/shower and it isn't an easy transfer or lacks bars for her to hold onto. But, no matter the challenge, we work through it together. She has a fun little basket she uses (with prompting) to carry things around, when she is walking (yes, at times she prefers to be the princess and have all wait on her). Carrying things is easier for her when she is using her wheelchair. We are in the process of trying to get her a new wheelchair that is a lighter weight and easier for her to maneuver so that she can do more chores at home. She prefers to walk and rarely uses her chair. I think she has used her chair maybe 5 full days since coming home and 2 were because of surgery. Right now she has no desire to use a wheelchair all day at school...she only uses her sports chair for PE when appropriate and sometimes for recess. She walks up and down stairs independently...I do spot her when there is snow, ice or raining outside since it increases her chances of falling. She has been successful walking on snow and ice this winter. We have used some special ice tips that flip over her regular tips.
Speaking of falling....she does fall. It is part of the SB....her legs get tired from walking too much which increases the likelihood of her falling. Most of her falls have been due to her either goofing around, her old brace or due to wet shoes/floors. So, we try to do simple things to prevent falls from happening....when her shoes are wet, when we get inside our house, she changes shoes or uses a towel to dry her shoes and stick tips off. I also find myself reminding her a lot to look at the floor and look for water.
Many times physical activities are very doable, it is just thinking outside the box and figuring out how she is going to do them. She dances with her class during PE. She likes to play basketball and climb on playground equipment. She loves going places and being with other kids. She does things all other kids do. The differences are there, but quickly fade into the background once you see past the wheelchair, braces and crutches....then you see the smart, ornery, determined, sweet girl there embracing life.
I realize that not everyone should parent a child with a physical disability....but please don't discount it. Yes, it changes parts of your life, but not necessarily in the way you think. If your child was born with a physical disability or your child had an accident that cause a spinal cord injury, what would you do? Would you love them any less? Turn your back on them? No, you wouldn't, you would figure it out and help them along the way. It is the same for me. Yes, Maria isn't my biological child, but she is the child who grew in my heart and a child who is so like me in so many ways. I cannot imagine my life without her.
I'm proud to be Maria's mom and get to see her take on the challenges each day brings. She is so much stronger than other kids her age....she has been through so much and the joy she has truly beams from her for all to see. I haven't talked a lot about life with SB and what it is like. If you have specific questions please feel free to ask.
It has been a journey that has allowed me to grow in ways I never dreamed were possible and I am a better person because of being Maria's mom. Over the past 8 months (minus a few days), I have had many people tell me how amazing or extraordinary I am. Let me tell you a secret....I'm not, Maria is the amazing and extraordinary one. I realize that many of the people who have said these things to me are most likely saying them because they cannot imagine parenting a child with a physical disability. It is not a choice they would choose to make. And it is not a choice that anyone should take lightly.
So, let me tell you a little about life with my fiercely independent daughter. Yeah, the child does not usually want help and almost always refuses to ask for help....unless she knows she is unable to do it or is highly frustrated. In fact one of the speech pathologist I work with taught the school nurse and me the sign for "help" which is simple doing a thumbs up with one hand and using your other hand to lift/push it up. Maria picked it up quickly and then made a thumbs down sign and pushed it down while saying "No, help". Yup, this is what I deal with at times. At the same time friends are amazed to learn that Maria does all her bath rooming on her own. For those who do not know much about Spina Bifida....most individuals with SB have no or little control over their bladder and bowels. Due to this Maria does currently wear pullups....we will be starting a cathing program this summer. Maria changes herself completely on her own. Maria also has clubbed feet and almost no feeling in her right leg. She really cannot walk without her braces and sticks. She transfers herself from the toilet to the bathtub/shower on her own. She showers on her own too (she had help at the doma with her bathrooming, so these are skills she really picked up within the first 2 months home)....and yes, she is at the age where she doesn't always want to shower daily. The only times I usually have to help her with bathrooming is if we spend the night somewhere else and she has to transfer herself to the tub/shower and it isn't an easy transfer or lacks bars for her to hold onto. But, no matter the challenge, we work through it together. She has a fun little basket she uses (with prompting) to carry things around, when she is walking (yes, at times she prefers to be the princess and have all wait on her). Carrying things is easier for her when she is using her wheelchair. We are in the process of trying to get her a new wheelchair that is a lighter weight and easier for her to maneuver so that she can do more chores at home. She prefers to walk and rarely uses her chair. I think she has used her chair maybe 5 full days since coming home and 2 were because of surgery. Right now she has no desire to use a wheelchair all day at school...she only uses her sports chair for PE when appropriate and sometimes for recess. She walks up and down stairs independently...I do spot her when there is snow, ice or raining outside since it increases her chances of falling. She has been successful walking on snow and ice this winter. We have used some special ice tips that flip over her regular tips.
Speaking of falling....she does fall. It is part of the SB....her legs get tired from walking too much which increases the likelihood of her falling. Most of her falls have been due to her either goofing around, her old brace or due to wet shoes/floors. So, we try to do simple things to prevent falls from happening....when her shoes are wet, when we get inside our house, she changes shoes or uses a towel to dry her shoes and stick tips off. I also find myself reminding her a lot to look at the floor and look for water.
Many times physical activities are very doable, it is just thinking outside the box and figuring out how she is going to do them. She dances with her class during PE. She likes to play basketball and climb on playground equipment. She loves going places and being with other kids. She does things all other kids do. The differences are there, but quickly fade into the background once you see past the wheelchair, braces and crutches....then you see the smart, ornery, determined, sweet girl there embracing life.
I realize that not everyone should parent a child with a physical disability....but please don't discount it. Yes, it changes parts of your life, but not necessarily in the way you think. If your child was born with a physical disability or your child had an accident that cause a spinal cord injury, what would you do? Would you love them any less? Turn your back on them? No, you wouldn't, you would figure it out and help them along the way. It is the same for me. Yes, Maria isn't my biological child, but she is the child who grew in my heart and a child who is so like me in so many ways. I cannot imagine my life without her.
I'm proud to be Maria's mom and get to see her take on the challenges each day brings. She is so much stronger than other kids her age....she has been through so much and the joy she has truly beams from her for all to see. I haven't talked a lot about life with SB and what it is like. If you have specific questions please feel free to ask.
Martenitsa
Today we spent the day working on martenitsas for friends. It was fun to get to incorporate part of Maria's culture into our lives. One of her former tutors from the doma sent us a link on how to make special martenitsa and one of her English tutors made a PowerPoint for us to share with her class! Our friend Annie even sent us YouTube links for the kids to see and offered to translate them for us. We have so many wonderfulBulgarian friends!
Grandma and a cousin even helped out!
Posted with BlogsyWednesday, February 20, 2013
Maria update
This month is flying by. We have had our second parent teacher conferences. Maria is doing great. Since this fall she has improved her reading comprehension 30%, doubled her reading fluency from 16 words a minute to 30 and improved her overall word recognition to 100. I'm very proud of how hard she has been working! I know she continues to be behind her peers, but she is making good gains in a short period of time. She also continues to improve in the other areas of her education and is beginning to present her projects in front of the class. This is a HUGE deal for her to get outside her comfort zone. Maria is such a perfectionist about certain things that she doesn't always like to take chances. So, I'm glad she is coming out of her shell more and feeling like she can do some of these things. She will have the chance to do a special presentation to her class in a little over a week on Baba Marta Day. She is VERY excited that her teacher is letting us have a Baba Marta party. Her teachers felt really bad about some poor planning on their part which resulted in her missing her class Valentine's Day party....yup, lots of tears and one very upset kiddo. But they really want to make up for that and are embracing the whole Baba Marta day party. It should be fun and I will try to get some pictures to share.
This last weekend we went to the science center with my niece, nephew and mom. It was quite fun and Maria wants to go again. There was much to see and explore. They were also having a special women in science event with lots of booths and activities for kids to try out. Maria loved it. I loved seeing the 3D printer which made me think of The Big Bang Theory tv show. It was also funny that Maria has as much dislike for snakes as my mom and I do. There are times when I have to laugh because she is so like me.
Maria also got an awesome painting from a friend. She loves it and it goes so well with her room.
A while ago I was contacted by the NGO I used for Maria's adoption. They were trying to get me to allow them to put Maria's story, pictures and videos up on their website.....claiming they had invested a lot in her.....I know who invested a lot in her, who supported her, made it so she could walk, dried her tears, who continued to tell her she was valued and that a family would want her, and who helped her to become the girl she is today and it was NOT this NGO. Due to the issues I had with them personally, I said no. At the same time I was concerned that they would go ahead and use the link to my YouTube videos on their website.....as a result I have taken my videos down (in case you were wondering where they went). It did make me sad because I want people to see the joy of adoption and how amazing adopting a child who is older or who has more "severe" needs can do once they are home....but I also feel the need to protect Maria from those who would use her for their gain. I strongly considered closing down my blog.....but I know how hard the journey through adoption is....I know others need to hear and see what happens when kids come home. Yes, there are ups and downs....other families need to see those ups and downs. I know they need to hear about Maria having a 20 minute crying fit because she got all the problems wrong on a worksheet and missed all the words on her spelling pretest (this was my reality on Monday). So, for now I will continue to blog and share our lives. I'm hopeful that this NGO will respect my wishes and leave us alone, I truly just want them out of our lives.
Sunday, February 10, 2013
Starfish
So many times this week I have thought about the impact a person can have on the world. Adopting Maria meant learning about her friends. I had the pleasure of meeting Zack and with the help of many friends spread the word about his need for a family. At the same time I began to learn ore and more about J and S. Last week was full of ups and downs regarding J and S's files. The human rights worker who has been trying to help was not allowed to meet with the head of social service in Maria's city. We knew it was going to be a fight. Thankfully J and S have several momma bears who want to see them with a forever family. So, the momma bears in Bulgaria and Switzerland started doing all they could...contacting all sorts of people who might help. We finally got more information.....so here is the story: around 6 years ago (yes, 6 years) both J and S's files were sent to the MOJ, both were missing 1 document that has to come from the city's social service department. The MOJ waited for this document for 5 years and finally had to tell the city's social service department that they were sending the files back! The lady in charge at the city social service told the MOJ fine, because J and S weren't going anywhere. Anyone mad? To make matters worse we were told there are many more files in this same department that are not being handled correctly (I have been told somewhere in the ball park of 40-50)....several other children having no chance for a family. At the same time as I was hearing this information there were people from Sofia checking on J and S's cases in the city they live. I had hope that something would happen, expecting it would take months. The whole time I kept thinking of the starfish story where the child throws the garfish back into the ocean making a difference for the ones that they could.....knowing that these amazing women who are fighting for J and S are doing the same thing, trying to give them a chance! The next morning I had the most amazing email from one of the ladies....because of all the pressure it on the lady at the social service department, J and S's COMPLETE files were on their way that day to the MOJ! The MOJ has promised to register the boys as quickly as possible and get them on the waiting child list. The NGO over there has also stated as soon as the files are available she will request them and we can start looking for a family for the boys! We would all like to see these boys go to the same family because they have been together since a young age. Both have some medical needs from what I know, but nothing that limits what they can do. They are loving and caring boys...I have no doubt that they will quickly attach to a family. I'm hesitant to put their pictures up on the blog, but will share those pictures and videos with any family who is interested in adopting them.
Sunday, February 3, 2013
Weekend
Well, it has been a full weekend! We decided to drive out to the Omaha area this weekend. We left Friday after school/work and ended up staying in Council Bluffs. By the time we got there Friday it was late enough to quick take showers, watch a little tv and go to bed.
Saturday was a wonderful day....it started by waking up to Maria saying "Happy Birthday Mom!" Yup, I'm a year older. We got ready and had breakfast at the hotel. Afterward we decided to use the swimming pool. I knew Maria had been exposed to swimming pools and the Black Sea, but figured she was never taught to swim. I was right! She pretty much hung onto the side of the pool or me...with the one exception that while I was showing her how to swim (while she was suppose to be holding onto the side of the pool), I turned around to see her floating face down....small pool thankfully and I got her really quick. No issues at all other than aging me quite a bit in the process! She spite out a little water and was fine...no tears or anything. I have decided that I need to find someone with more experience to teach her how to swim! After that incident we went out to lunch and went to Charming Charlie. Yeah, Maria loved Charming Charlie....what girl wouldn't? We went back to the hotel and worked on our posters to welcome Andrei home. Andrei is a boy who just came home from Bulgaria. His family lives near Omaha, so we wanted to help welcome them home. After our signs were made we had a nice dinner at the Cheesecake Factory and then off to the airport. Yeah, took a while to find the right airport, but we were in time and got to meet and welcome home Lynda, Doug and Andrei. Wonderful family! Can't wait to spend more time with them at the reunion this summer.
Today was spent driving home and doing some things to get ready for this week.
Saturday was a wonderful day....it started by waking up to Maria saying "Happy Birthday Mom!" Yup, I'm a year older. We got ready and had breakfast at the hotel. Afterward we decided to use the swimming pool. I knew Maria had been exposed to swimming pools and the Black Sea, but figured she was never taught to swim. I was right! She pretty much hung onto the side of the pool or me...with the one exception that while I was showing her how to swim (while she was suppose to be holding onto the side of the pool), I turned around to see her floating face down....small pool thankfully and I got her really quick. No issues at all other than aging me quite a bit in the process! She spite out a little water and was fine...no tears or anything. I have decided that I need to find someone with more experience to teach her how to swim! After that incident we went out to lunch and went to Charming Charlie. Yeah, Maria loved Charming Charlie....what girl wouldn't? We went back to the hotel and worked on our posters to welcome Andrei home. Andrei is a boy who just came home from Bulgaria. His family lives near Omaha, so we wanted to help welcome them home. After our signs were made we had a nice dinner at the Cheesecake Factory and then off to the airport. Yeah, took a while to find the right airport, but we were in time and got to meet and welcome home Lynda, Doug and Andrei. Wonderful family! Can't wait to spend more time with them at the reunion this summer.
Today was spent driving home and doing some things to get ready for this week.
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