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.