I have been thinking a lot about my last post and about the raw emotions that went into that post. I really did just sit down and write what I was feeling and what was in my head. Though sometimes I feel like I do not explain my feelings as well as I would like and as I was thinking about how I could better express what I was trying to explain in my last blog post, I was reminded of a story that my beautiful sister in law sent me right after I had Payten. I remember reading it and crying. I remember thinking, oh my gosh, this mother has to be able to read minds, for how else would she know exactly how I am feeling?! I guess you could say, because she lived it herself, but I like to believe she could read minds!!!! LOL! Anyways, all these feelings and emotions that I had right at first with Payten, came back to me when I found out what was going on with Zachary and the challenges he would face and the realization that there would be lots of things I would need to learn and change in order to help my son reach his full potential.
This story is entitled: WELCOME TO HOLLAND, please read for you will come to fully understand my emotions for both Payten and Zachary and what I was trying to express to all of you in my previous post.
It was written by BY EMILY PERL KINGSLEY, the mother of an incredibly special boy with Down Syndrome
I am often asked to describe the experience of raising a child with a disability-to try to help people who have not shared that "unique" experience to understand it, to imagine how it would feel. It's like this....
When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The COLISEUM, THE MICHELANGELO-DAVID. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go.
Several hours later, the plane lands. The stewardess comes in and says, "WELCOME TO HOLLAND"! HOLLAND?? you say. "What do you mean Holland"? I signed up for Italy!!
But there's been a change in flight plans. They 've landed in Holland and there you must stay".
"The important thing is that they haven't taken you to a horrible, filthy, disgusting place, full of pestilence, famine and disease. It's just a different place"!
So you must go out and buy new guide books. And you must learn a whole NEW LANGUAGE. And you will meet a whole NEW GROUP OF PEOPLE, you would never have met!
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there a while and catch your breath, you look around, and you begin to notice that Holland has windmills. Holland has tulips. Holland even has REMBRANDT'S!!
But everyone you know is busy coming and going from Italy and they're bragging about what a wonderful time they had there and for the rest of your life, you will say, YES, that's where I was supposed to go. That's what I planned! And the PAIN of that will NEVER, EVER, EVER go away, because the loss of the DREAM is a very significant loss. But if you spend your life MOURNING the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about HOLLAND"
This story/explanation makes me cry every time I read it, for it is the utmost of truth. I struggled in school, like I explained in my previous post and I had a lot of unresolved scars from things kids would say to me during my adolescents. Scars that I believed held me back in the sense of furthering my education. I didn't believe I was smart enough to become a Nurse or Teacher, etc. But how wrong I was!!!! It took the Lord showing me that I was smart enough to do anything as long as I had a love and desire for it. I was chosen to be Payten's Mom because the Lord knew I was smart enough to do it! He knew that I had the strength, determination, love, courage and talents to do the role of mothering Payten! No, just because I had these talents, did not mean it came easy. We all have a choice in how we handle life's challenges. We can choose to embrace them or we can spend our lives turning away from them and dreaming of what could have been.
I could have given in to those old wounds from my childhood, that kept shouting in my head, You are no good, You can't do this!, You could barely get through science, are you kidding me!, You are no smart enough!, This is medical stuff, you are not going to be able to understand it, let alone take care of a daughter who has complications such as this, and when you make a mistake because you will, it will be your fault your daughter fails or worse dies! Believe me, I am not exaggerating these thoughts. This truly is what went through my head shortly after birthing Payten and finding out everything to which Payten suffered from. But again like I said, I had a choice, I could give into these feelings or I could believe in myself and trust in the Lord and know that through him and by love, I could do anything that was needed of me.
Once I got past the initial shock of landing in Holland rather than Italy and deciding to embrace this new place, everything started falling into place. I had the courage and strength needed to ask the tough questions and to ask the question that were probably dumb, but that I didn't quite understand! I was given the tools and the time to study what I needed to study to fully understand what all of this would in tale. My Lord blessed me with Doctors who were kind, compassionate, understanding and willing to help teach me, rather than degrade me. By allowing myself to mourn the shattered dreams of the death of my "healthy child", I was able to release the anguish, the anger, the pain, sorrow, bitterness, hurt and guilt that came with this so called death. Once I released these emotions and took the time to go to my Father in Heaven in prayer, I was able to see the beauty of what Holland had to offer. I was able to realize that I was given a gift and that it was my choice what I choose to do with this gift! And I chose to see the beauty, to realize that I was indeed good enough, smart enough, and talented enough to be the best Mom Payten could have.
This was done by choosing to love her. This was done by realizing that no matter what, I created this little being and she had worth, for she was a child of god, no matter what her circumstance was, she deserved to be loved and to be given the opportunities to learn and grow and succeed just like everyone else. From the beginning we have always tried to treat Payten the same as we did our other children and give her the same opportunities our other children had. We have never excluded her in anything. Joseph loves to rough house with our kids and even with how fragile Payten was/is, he still swung her around and wrestled with her, etc. I believe by doing these things, by showing unconditional love to Payten, we gave her the will she needed to fight. The odds have never been in Payten's favor. If you saw a picture of her brain and you saw all the atrophy that has occurred, you would be shocked. It is not a pretty picture and it has the potential to get worse. Yes, she is on medication to help stop or slow down this process, but eventually like I have said in previous posts, this medication will quit working and then it will be a wait and see type of game.
We were told she would most likely never walk, sit, crawl, talk, etc. But we also held out hope that maybe she would. We understood that it most likely would not happen, but we never gave up hope. For we believe in miracles and we believe in a God who grants miracles. And she is living proof that miracles to exist, for she is accomplishing some of these things. After four years, she is finally sitting up on her own! After four years, she is finally starting to stand with assistance for one minute intervals, sometimes longer. After four years, she is starting to take steps in her gait trainer! For the first time we are starting to see our love pay off. We are starting to see our determination and our hard work of proving to Payten that she was just as good as anyone else, pay off. We are seeing miracles happen right before our eyes and they are magnificent! Now, will she be an Olympic Athlete, no! Will she be Valedictorian of her class, absolutely not! But will she know she was loved, will she know that she belonged to a family who was proud to say that they were related to her, will she know she was given a chance? Absolutely! That has always been my prayer for her, that she knows how truly special she is and that she knows we know how special she is and that we love her with all our hearts.
Sometimes I wonder to myself, why did this happen when it did. Why didn't it happen when my other children were a little older and could more fully understand the circumstance which we were faced with and feel a little more secure in the fact that Mom and Dad would be there for them and love them no matter what. For a long time I didn't understand or know the answer to these questions, but I now believe this circumstance with Payten came at the time it did, to help open my eyes to what was important and to help put my priorities into place and to strengthen my talents and abilities that I could and would have more faith in myself, so that I could help Zachary face this new challenge in his life. As painful as it is to accept, for I have been there and like I said in my last post I have felt the pain these challenges bring and I did not want this for my child. But I have come to know that everything will be okay. I know what the greatest thing I can do for him is, and that is love him, believe in him and let him know that he is a child of god who is of worth and value!
I have been brought to my knees in gratitude many times, for these lessons I have learned. I could have never imagined the changes that would take place within myself, from giving birth to a child named Payten. I now understand the meaning of trusting in the Lord with all thine heart and leaning not to mine own understanding, for if we do this, he will mold us into the person he needs us to be, in order to fulfill the mission we were placed here to fulfill. My mission was to be a Mom to four beautiful children! Throughout my life I will keep striving to learn and grow, so that I may become better and learn to love my children the way they are intended to be loved! Zachary will go on to do great things! It may take him longer than most, just like Payten, but he will do great things, just like Payten is! I hope this gives a little more insight to how I was feeling the other day when I had the bomb dropped on me about Zachary and his learning disability. I also hope it gives you a little more insight to how I have felt the past fours years being Payten's Mother and what it takes to mother a child that is so very special as she is. May all parents realize the important roles they play in their children's live and be the love and examples their children need them to be in order for them to reach their full potential. God bless you all!
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