Finding Acceptance One Day at a Time

Today I was looking back at all the pictures and videos we have taken of Maelee. One that sticks with me is the first time she shook a rattle in her right hand. 8 months old!!! I will never forget that day! I cried tears of joy watching her do something we knew she was going to do but just didn't know when. This was one of those things I kept comparing to other babies......I know I should never do that but babies shake rattles.....so I was waiting impatiently for this to happen. Little did I know the waiting game was just beginning for this milestone.......yes she shook the rattle in her right hand and learned to shake both hands simultaneously (11 months) but when would she shake the rattle only in her left hand?

This was just the beginning of a journey for her, a life long journey.  Throughout the past few months I have spent many hours reflecting on where we have come and where I dream we go. One of those dreams has always been that Maelee will use both sides equally but unfortunately the more she develops and wants to be more active, the more it becomes apparent this dream won't happen......

Dreams......
I dream she will shake a rattle only in her left hand but I know she will shake both hands together and that is amazing!! I dream that one day she will be able to walk without weakness or muscle fatigue but I know that she will work the rest of her life to keep her mind and muscles working together. I dream that she will learn to scribble and do things with her left hand but I know she will be right handed because of her disability.  I dream that she will have no struggles to walk up stairs or kick a ball but I know that this does not come easy for my child.

Reality.....
Maelee will shake a rattle with both hands at the same time.....that's a miracle for her! Maelee will learn how to read her muscles and body and she will know what she needs.....she is a determined little girl. Maelee will draw, scribble, color, and eat with her right hand....she will learn to use her left for assistance. She will walk up stairs and learn to kick a ball....it may not be the way you and I learned and it may take longer but she will do it. Maelee will never use both sides equally.

Letting go of the dreams for that "perfect" child...... While pregnant every woman dreams of that perfect baby, the perfect birth, the perfect child, the perfect life, the baby and family that is the envy of everyone they meet. I am jealous of women who are pregnant the whole 40 weeks, find myself jealous of people with preemies who have no long lasting health complications, and jealous of people who do the "normal" running around from games to dance instead of therapy to therapy session.When something traumatic happens in your life you grieve and in those stages of grief getting to the one of acceptance has been the hardest for me....I would be lying if I said I was fully there. I am not. There are days I am angry, upset, and would trade anything to "fix" Maelee. This may sound crazy that a Mother would say this but I am that Mom. I am the one who watches her baby cry during therapy, sees her struggle when she tries to move, and has watched simple tasks become challenges. I don't know when acceptance will fully set in but I do know that every day I learn more from Maelee than anyone else has ever taught me.

I believe that acceptance will come with time, healing, faith, and prayer. Her birth was traumatic, the first 39 days of her life were completely unbearable, and the past 18 months have been a roller coaster of appointments, therapies, and multiple life long disorders being diagnosed.  I will accept it all one day but that does not mean that I do not accept Maelee....please do not get these confused.

I accept Maelee for who she is and all that she will dream to be. I accept that she has cerebral palsy, PLMD, RLS, food allergies, and reflux. I just can't accept that she will never use both sides equally or that we have spent the first 18 months of her life in therapy offices and doctor appointments while every other new mother is getting monthly pictures made or going to the park and play dates. I can not accept that people who love Maelee do not accept her diagnosis, pretend it is not there, or ignore the conversation all together.

Accepting Maelee is accepting everything about her. She is beautiful, has reddish blonde hair, crystal blue eyes, a heart that is so full of love and laughter, sweet soul, cerebral palsy, enjoyes the sunshine, loves to give kisses and hugs, PLMD, lovable in every sense of the word, smart, brilliant, RLS, kind, Mommy's girl, food allergies, funny, reflux, and most of all her heart.....there will never be enough words to describe the fierceness and determination that such a loving and kind heart holds. (this list could go on forever.....) This heart is what makes her who she is!

Finding acceptance one day at a time is the only way to move forward in our life. So tonight as I go to sleep I am overwhelmed and saddened and that is ok. I know that tomorrow I will wake to Maelee's sweet smile, kisses, and her sweet jabber words and it will be alright! One morning I will wake with acceptance, tomorrow might not be that day, but someday will be!