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!
Friday, October 26, 2012
Wednesday, October 24, 2012
Dreams we have for our children, do not always go as planned.
Motherhood is really hard at times! ~ This is a statement every mother has said at least once in their life as a mother. For me, I say this often, because it is really hard. Sometimes I feel that I have it harder than most and then I realize that is not true, it could always be harder. And it is all about perspective and how we see things/deal with things/situations. Right now my heart is breaking a little inside for one of my children, no, not the one you think, another one! I am seeing me in this child. I am seeing things that I had to go through and struggle with as a child, things that I was hopeful my children would never have to face and now one of my kids is having to face it and it is hard to see. I understand the pain, for other children can be so cruel and I still have scars from things children did to me and I worry that my child will have scars and I don't want this for them. As a Mom you want everything to be perfect for your kids, you want to protect them from hardships, grief or pain. You want them to be better and have better than what you had. Unfortunately, sometimes that is not possible and as a mother this is hard to swallow.
When I was a child, I had a learning disability in reading, writing, and language and I was tormented by others. I was called every name in the book and not only did I suffer from that, I suffered from a weight problem, I was the heavy, dumb, clumsy kid, as everyone called me. Scars that have never fully healed and insecurities I still face to this day. Maybe that is why I am a perfectionist, control freak, people pleaser, severely OCD person who allows people to take advantage of her! But with all of this, comes good too, for I have learned compassion, understanding, courage, strength, kindness and love. Things that many people lack. I know how it feels to be the outcast and think that is why when I have served in different areas where children are involved, the kids who are more quiet, reserved, shy, etc. find comfort with me and are attracted to me, because I relate to them, I understand them and I show them compassion and love that they are so desperately seeking. So even though I hated many things about myself as a child and wished I was different, meaning smarter, prettier, thinner, etc. I am grateful for the lessons I learned from being faced with these trials.
I do have a reason for sharing all of this! Believe me, this is a part of me that I have tried to bury, it is a part of me that is extremely hard and emotional to share with others. The reason I share this is because my son Zachary is facing the learning disability part. He doesn't suffer from the weight or looks issues I did, but the learning issues he has. He struggles in his reading, writing and language, just like I did. And I have seen it for while now and I have tried to get the school and teacher's to see what I have seen and finally they are seeing it and they are listening. I wish they would have given him help sooner, but I am glad they are willing to give him the extra help he needs now. I still struggle with blaming myself, for I feel that if my life would have been less hectic. If I would not have neglected him, because I had Payten to care for, he would not have these learning problems. Even though I know I did my best and juggled my life to the best of my ability and still do, I can not help but blame myself for him falling behind. I am going through an inner hell coming to terms with all of this, for I feel, why does another one of my children have to suffer. Doesn't Payten suffer enough, why does Zachary have to suffer? It just does not seem fair, but then I am reminded, that it could be worse and I need to find the good in this and be grateful for the blessings I do have.
For some of you reading this, this all may seem very silly. What's the big deal? So he has a learning disability, who cares? He's not dying! It's something that can be fixed and you are correct! It isn't a big deal, it is something that can be fixed, but it is also something that can affect that child's self esteem and spirit and that is where the big deal lies, for that is what I don't want to be affected. I don't want my child's confidence broken, self esteem lessened, spirit shattered, because some other child finds it funny/easy to tease or bully him. And that happens to these kids who suffer from these problems. So I have the tough job as a Mom, to sit down and talk with my son and explain to him, that yes he may be different in the sense of how he learns, but he is no different from any other child out there! He is just as smart and has the same opportunities as any other person, he just may need a little extra help, support or even a different or longer path to follow in order to get to that same place and that no matter what happens or no matter what people say, he is great just the way he is. The problem is, I pray that he listens and believes me, for my Mom always did this with me and I still let the things other people would say, affect and hurt and scar me and that is my fear for my son. I fear, he too will allow others ignorance to scar him and I don't want him to be damaged like I was damaged. So again like I said before, this thing called Motherhood is hard!
Going through this and recently celebrating Payten's birthday, has brought me back to the eventful/painful time of Payten's life when she was first born. Being reminded of how you have dreams for your children and how you always dream only best dreams for them, but sometimes the Lord has other plans that shatter those dreams. While pregnant you always think of your child and the life that child will have. You dream about how perfect they will be and how beautiful and smart, etc. they will be. Never do you think something will be wrong. But when that day hits, whether it be right at birth or nine years later, it still is devastating. For you are faced with a circumstance that you have to mourn. No matter how big or small it is, you still have to go through a grieving process. Reason being, the dreams you had for that child have been shattered and you have to face those shattered dreams and mourn those shattered dreams and accept those shattered dreams. For Payten it was really difficult, because Payten is not a straight forward case. She does not have Cancer, Autism, Diabetes, Learning disability, Cerebral Palsy, etc. She has an unusual case, full of many different things that bring uncertainty and unknown prognosis'. So through these four years we have had to live with the reality that she would not accomplish anything. We had to understand that every time she went into the hospital, might be the end of her little life. But we also had to live with the faith and hope that hurts would be healed and that she would accomplish things as long as the Lord deemed fit.
Can I just say, that Payten is a miracle! She has accomplished things beyond belief and she is still going strong! It is amazing to see! I never believed she would sit up and she is, I didn't know if she would roll over and she does! I didn't think I would be able to communicate with her and she is starting to do so! Hope is a great thing! We have always kept hope within our hearts regarding Payten and I believe that it is because of that hope, that Payten is able to do these things today. She is acting like a typical one year old, not walking yet! I say yet, because I have great faith and hope that in the near future with help from walking device she will! Yes, she is four and she has the mentality of a one year old, but all I have to say is it is progress! Yes, it may be extremely slow, but progress is progress and we will take what we can get! So as I have been faced with all of these recent findings regarding Zachary, I am reminded by my miracle baby, Payten, that it will be okay. That through hope all things can be done and miracles can happen! It will be challenging and dreams of him not having to face things I had to face as a child have been shattered, but it will be okay. He will make it and he will be better, stronger and greater because of it! Zachary is my kind hearted, peaceful loving, understanding child! I believe the Lord blessed him with these gifts because he knew he would be faced with some difficulties and these gifts would help mold him into the outstanding person he will become and is!
I love being a Mom and I love my children and I love my life. I have been faced with many difficulties, that at times seem unfair and if I could choose do it all over again, I would not want to relive these difficulties, but I would want to have the knowledge that I have gained by going through these difficulties. I would not give up these life altering lessons, for anything, for they are blessings that have made me a better person, wife and mother. So even though Motherhood is difficult and some of the dreams I have had for my kids have been shattered/changed, I would not trade it for the life of me, because it is beautiful and I love being a mom! And I believe my kids are perfect, as perfect as can be! May we all find the good in life!
When I was a child, I had a learning disability in reading, writing, and language and I was tormented by others. I was called every name in the book and not only did I suffer from that, I suffered from a weight problem, I was the heavy, dumb, clumsy kid, as everyone called me. Scars that have never fully healed and insecurities I still face to this day. Maybe that is why I am a perfectionist, control freak, people pleaser, severely OCD person who allows people to take advantage of her! But with all of this, comes good too, for I have learned compassion, understanding, courage, strength, kindness and love. Things that many people lack. I know how it feels to be the outcast and think that is why when I have served in different areas where children are involved, the kids who are more quiet, reserved, shy, etc. find comfort with me and are attracted to me, because I relate to them, I understand them and I show them compassion and love that they are so desperately seeking. So even though I hated many things about myself as a child and wished I was different, meaning smarter, prettier, thinner, etc. I am grateful for the lessons I learned from being faced with these trials.
I do have a reason for sharing all of this! Believe me, this is a part of me that I have tried to bury, it is a part of me that is extremely hard and emotional to share with others. The reason I share this is because my son Zachary is facing the learning disability part. He doesn't suffer from the weight or looks issues I did, but the learning issues he has. He struggles in his reading, writing and language, just like I did. And I have seen it for while now and I have tried to get the school and teacher's to see what I have seen and finally they are seeing it and they are listening. I wish they would have given him help sooner, but I am glad they are willing to give him the extra help he needs now. I still struggle with blaming myself, for I feel that if my life would have been less hectic. If I would not have neglected him, because I had Payten to care for, he would not have these learning problems. Even though I know I did my best and juggled my life to the best of my ability and still do, I can not help but blame myself for him falling behind. I am going through an inner hell coming to terms with all of this, for I feel, why does another one of my children have to suffer. Doesn't Payten suffer enough, why does Zachary have to suffer? It just does not seem fair, but then I am reminded, that it could be worse and I need to find the good in this and be grateful for the blessings I do have.
For some of you reading this, this all may seem very silly. What's the big deal? So he has a learning disability, who cares? He's not dying! It's something that can be fixed and you are correct! It isn't a big deal, it is something that can be fixed, but it is also something that can affect that child's self esteem and spirit and that is where the big deal lies, for that is what I don't want to be affected. I don't want my child's confidence broken, self esteem lessened, spirit shattered, because some other child finds it funny/easy to tease or bully him. And that happens to these kids who suffer from these problems. So I have the tough job as a Mom, to sit down and talk with my son and explain to him, that yes he may be different in the sense of how he learns, but he is no different from any other child out there! He is just as smart and has the same opportunities as any other person, he just may need a little extra help, support or even a different or longer path to follow in order to get to that same place and that no matter what happens or no matter what people say, he is great just the way he is. The problem is, I pray that he listens and believes me, for my Mom always did this with me and I still let the things other people would say, affect and hurt and scar me and that is my fear for my son. I fear, he too will allow others ignorance to scar him and I don't want him to be damaged like I was damaged. So again like I said before, this thing called Motherhood is hard!
Going through this and recently celebrating Payten's birthday, has brought me back to the eventful/painful time of Payten's life when she was first born. Being reminded of how you have dreams for your children and how you always dream only best dreams for them, but sometimes the Lord has other plans that shatter those dreams. While pregnant you always think of your child and the life that child will have. You dream about how perfect they will be and how beautiful and smart, etc. they will be. Never do you think something will be wrong. But when that day hits, whether it be right at birth or nine years later, it still is devastating. For you are faced with a circumstance that you have to mourn. No matter how big or small it is, you still have to go through a grieving process. Reason being, the dreams you had for that child have been shattered and you have to face those shattered dreams and mourn those shattered dreams and accept those shattered dreams. For Payten it was really difficult, because Payten is not a straight forward case. She does not have Cancer, Autism, Diabetes, Learning disability, Cerebral Palsy, etc. She has an unusual case, full of many different things that bring uncertainty and unknown prognosis'. So through these four years we have had to live with the reality that she would not accomplish anything. We had to understand that every time she went into the hospital, might be the end of her little life. But we also had to live with the faith and hope that hurts would be healed and that she would accomplish things as long as the Lord deemed fit.
Can I just say, that Payten is a miracle! She has accomplished things beyond belief and she is still going strong! It is amazing to see! I never believed she would sit up and she is, I didn't know if she would roll over and she does! I didn't think I would be able to communicate with her and she is starting to do so! Hope is a great thing! We have always kept hope within our hearts regarding Payten and I believe that it is because of that hope, that Payten is able to do these things today. She is acting like a typical one year old, not walking yet! I say yet, because I have great faith and hope that in the near future with help from walking device she will! Yes, she is four and she has the mentality of a one year old, but all I have to say is it is progress! Yes, it may be extremely slow, but progress is progress and we will take what we can get! So as I have been faced with all of these recent findings regarding Zachary, I am reminded by my miracle baby, Payten, that it will be okay. That through hope all things can be done and miracles can happen! It will be challenging and dreams of him not having to face things I had to face as a child have been shattered, but it will be okay. He will make it and he will be better, stronger and greater because of it! Zachary is my kind hearted, peaceful loving, understanding child! I believe the Lord blessed him with these gifts because he knew he would be faced with some difficulties and these gifts would help mold him into the outstanding person he will become and is!
I love being a Mom and I love my children and I love my life. I have been faced with many difficulties, that at times seem unfair and if I could choose do it all over again, I would not want to relive these difficulties, but I would want to have the knowledge that I have gained by going through these difficulties. I would not give up these life altering lessons, for anything, for they are blessings that have made me a better person, wife and mother. So even though Motherhood is difficult and some of the dreams I have had for my kids have been shattered/changed, I would not trade it for the life of me, because it is beautiful and I love being a mom! And I believe my kids are perfect, as perfect as can be! May we all find the good in life!
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