Saturday, November 12, 2011

a wish.

I had meant to share this little story back in the summer, and now here it is November already EEK!... I wanted to share it now because it is about 'a wish' and now that Christmas is approaching it fits well:)  
I can't imagine my kids not wishing for "stuff" daily. Especially around this season, 'Wishing' is in full force! The toy catalogs are all laid out on the floors, the long Target shopping trips, the broken toys and the old video games. The Teens are wishing for that cute boy or girls cell number, or for that new car they have had their eye on, maybe they are wishing people just understood them, wishing they didn't hurt or feel so alone in this big world. Adults even wish, maybe for a better job, wish the house was paid off, well, we wish everything was paid off!, we wish we won the lottery. Maybe you wish that painful obstacles would disappear, You wish accidents had never happened, you wish mistakes were never made, you wish your child never hurt or felt pain you couldn't fix, and etc...I only wish it were that easy!
My family and I were out in the yard having a little picnic and enjoying a beautiful summer day, the dandelions were in full-force in our yard, and quite a few had started to get to the point where my boys loved to blow on them and all the tiny seeds would go all over the yard, my oldest son Ethan, had wished for more money then he could ever imagine, so he could buy everything he ever wanted, Kaden wished that 'he could just play video games all day long or that pizza and bread-sticks were the only food ever!'.. The boys at one point must have taught Jayci how to do this, and I hadn't known that until just then, when we were outside, and Jayci had shouted with much excitement  'MOM!!, a Wish!, a Wish!, a Wish!.. Hurry Mommy, can you go get it for me??!!' Without even thinking I ran to her wish, and plucked it out of the ground and careful not to lose any of its power..(the seeds) I ran it back and placed it in her hand. All of the sudden, I felt guilty, I felt sad, I thought, 'oh no, what did I just do,' I was scared for her. I was afraid she might wish for something I couldn't make happen, I was fearful her little heart wasn't gonna understand why her wish didn't work, I got teary eyed and I thought the moment had finally come when I was gonna have to tell her 'honey, your wish is to big' .. or 'that your wish may never come true.' I didn't want her to know this disability she was diagnosed with, I want her to just be a little girl, and not worry about what tomorrows obstacles may bring, I thought, she is just to young, I can still protect her even if it's just a little longer and to keep her safe from what she may not understand yet. Yes, as I'm sure you guessed, I just knew her wish was gonna be 'I wish to walk, I wish to run, skip, or more!  Mommy, please make it come true!!' I was thinking, as my tears were coming down, 'if I had a wish baby girl, I would give it to you,' If life only worked like this, and I only had even just one wish, it would all be yours Jayci. But, as we know, all too well, life doesn't work like that. Life is not a Disney movie, Wishing on a star has never worked, and Mommy's are not Fairy-Godmothers. I was wiping my tears and was just watching her look at her wish, and I could see her determined little face pondering and searching so hard for 'her perfect wish.' She was ready and the moment was here, she raised that little flower to her mouth and with her eyes closed, she lifted her little face to the sky and blew as hard as she could, and instantly the wind was taking that little wish, just like it had always done with my boys. Just after, she paused for just a second, lowered the flower to her lap and then her eyes met mine, so beautiful still,  I was so un-prepared, so frantic, trying to search for my words. I swallowed the lump in my throat and finally finding the courage, I softly said, 'what did you wish for honey?' Well, she gave me her biggest smile and with no hesitation at all said 'Mommy, I just wished for rainbows, for MORE beautiful rainbows.'... In that moment my heart melted and my Love for her grew even more, the fear went away quickly, I grabbed her, squeezed, kissed and held her, I thanked my God for her, my special gift, for my little girl, for this blessing. I then, whispered in her ear 'what a beautiful wish honey!'
God is so good to us, We saw SO many rainbows that week, and every single time we did I was reminded that life is not always as hard, as I may think it is, or think it is going to be, I need to just let her have her 'wishes' like any little girl, with our without a disability. And yes, I know the day may come when I have to tell Jayci some things, and it is going to be one of the hardest things I will ever do, But, Jayci is stronger then I will ever be. She isn't fearful like I get sometimes. She wished on her little flower... and it did come true, over and over again. As you can well read, I do have super, positive days, where I am hopeful and can conquer the world with my family, and then there are other days, where I am fearful of even a wish.
Please, remember that our lives do not ONLY consist of hardships, trials, the lack of money, fear and pain. Remind yourselves and your children to dream big, to wish big, for you to want what is truly best in your life and for your children, but sometimes, a simple wish for a beautiful rainbow will do better, to remind you to just look around at the wonderful life you do have, the blessings that are in, and all around, ALL of our lives.

Sunday, May 1, 2011

the view from here...

 Jayci is getting stronger everyday, and I will always have hope for a complete healing.. Currently Jayci's primary movement is a "butt scoot"..  at Christmas time 2010, She started "bearing weight" on her legs (age 2). She has a gait trainer that holds her up and she is able to take steps. She is in Physical and Occupational Therapy up to 4x per week. It would be hard to put an accurate age of where Jayci is at physically.. For instance, she is unable to lift her head and chest up from the ground while on her tummy. but while sitting, she can sit completely straight with her head up. the nerve racking part is, if someone startles her and she starts to fall, she cannot stop her fall, her low muscle tone in her arms is not enough to assist her with stopping a fall. Lifting her is different then lifting a normal child, you will instantly feel the "low tone". She can roll, and her newest accomplishment is while sitting she can get into laying. She loves her Jumpy, she is able to dance and twirl in it. Jayci will love it, if you "scoot" with her.. or "sit" by her.. she demands it quite regularly especially by one of her papa's.
The following is part of the email I received, after the phone call from the doctors at Gillette Childrens..
If you are a mother who has ever received a phone call "like" the one I did.. You know there are no words to write or speak, to explain the fear that I was experiencing in that moment. I had asked the woman to send me an email, because I couldn't even hear the words being spoken to me.. here is just a paragraph..
Congenital muscular dystrophy with merosin deficiency is the most common form of congenital muscular dystrophy accounting for approximately half all congenital muscular dystrophies.  It is estimated that 1/76,000 individuals is affected with Congenital muscular dystrophy with merosin deficiency world wide.  This condition ranges from never walking to walking at the later age (2 or 3 yrs).  A majority of children are diagnosed at birth or shortly after because of low muscle tone.  The best predictor of how a child affected with this condition will do clinically in the future is how they are currently doing.  Jayci is continuing to improve and gain new skills, which is a great sign...
Congenital muscular dystrophy, merosin deficient- 5 words... I had never heard, read, wrote or said aloud before that moment. These 5 words were placing my baby girl in a "group of individuals", these 5 words were bringing me more tears then I thought were possible, these 5 words were going to now, be a reminder that my life was not going to be the way I had originally planned.  At the beginning, 5 words sounded hopeless, Its been over a year now, and it is easier to say them, they are words, it is easier to hear them, partly because the unknown, became the known.. or rather, the starting to know. Jayci may never get to dance like other 2 years old spinning around in their princess dresses, or at a prom, or at her wedding. She may not ever get to walk around the mall shopping with me,  She may never get to run full speed into her daddys arms when he gets home from work. All these things and more I had never thought about until the day they said "it may never happen"..As Jayci's mom I can't stay there in that mindset. Please remind yourselves daily that there is hope. Our world needs hope, we all experience and feel different hurts, pains and obstacles. But we must move beyond it, because we can't live there forever in a state of fear. A choice can be made to love, forgive, or serve in such a capacity that helps lead to a decision to heal a "hurt". to run to your child, when she can't run to you, to pick her up and dance with her in your arms wipe tears,  Yes, it is a very different view today. and no matter what obstacles you are going through today, I challenge you to live with Hope, because Joy will come! I am a mother, that has learned to help heal what I am only capable of healing,  and to trust the only One to heal, that which I cannot.

Friday, April 22, 2011

its a "different" wonderful!

So where do I begin... It was a year ago this February that Jayci was diagnosed with Congenital Muscular Dystrophy, I was apprehensive about making a site for her at first, but now I think it is a good time. I suppose I waited partially because I wanted to protect my baby girl. I have never posted anything on Facebook or the like because I couldn't, It hurt too bad, this wasn't the flu or the sniffles, I didn't want to belittle what was going on with her life by a status update, I know its a quick way to get information out there, but I just wasn't ready, and hey!, I'm still expecting a miracle here!! A diagnosis is not a sentence to a life less lived or less enjoyed. I could tell you many things Jayci cannot do, but rather then that I would start with the things she can do! Just the other day she was given a test by one of her therapist she scored in the high 90's for verbal and communication skills.. I mean she can carry on full conversations! Its so fun to listen to her! She can sing full songs along with the radio, with the family or all by herself! She loves being outside, She can entertain her dollies or anyone else that's around to listen to her ideas, story's or a full, exaggerated explanation of events that have taken place recently, She loves dressing up in her many tutu's and bows. She must have nail polish on each finger and toe.. or she likes me to fix it.. She loves jewelry too! You will rarely see her without a necklace on! There is something so special about Jayci, and even though I can't exactly place my finger on it. I know God plans to use her in incredible way today and in her future! She Loves life! I don't know if she knows yet what makes her a little different, She has dried my tears many times, and assures me that "its ok, mommy" and "don't be sad." She doesn't yet know the tears have been for her, I guess I ache for what tomorrow may bring, and people choosing to see a wheelchair, a disability or a handicap...When they could see the most amazing little girl in the world, that could brighten any dull day with a simple smile, What I've realized is through your life you will need to make decision on how you look at peoples ability's and disabilities Although her physical strength may appear weak.. I assure you, Strength doesn't come from physical capacity. It comes from an individual will. Strength to me now, is the size of ones heart... and trust me, She is the strongest little girl I know. My next post I will update you on where Jayci is at physically, so I can get you caught up with that! Thanks for reading!