Guest guest Posted May 31, 2008 Report Share Posted May 31, 2008 BRILLIANT! Wow, it really felt as if she was inside my head. Thank you for that. Dinkins-Borkowski; Nolan(5) nocf, Phoebe(3) Ds & cf Phoebe Updates CLICK HERE " The future belongs to those who believe in the beauty of their dreams. " – Eleanor Roosevelt From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of Kathy Ratkiewicz Sent: Saturday, May 31, 2008 10:08 PM To: DownSyndromeInfoExchange Subject: [DownSyndromeInfoExchange] Everyday Miracles Everyday Miracles by Silvia Lawniczak The miracles of everyday life with our special-need children not only reflect the challenges that our children surmount to be able to accomplish everyday tasks, they also mirror the challenges that we as parents surmount to be able to take care of our children. It's almost like our children teach us in no uncertain terms that life is precious. And taking one day at a time means that tackling one challenge at a time, like our children do, makes life a little less complicated. It also means that we fully accept the struggles and the pain associated with our work of love, and we can willingly seek out the help we need, accept the help of others, learn how to pray, learn how to hope, learn how to handle every emergency as it comes and learn how to seek the care that our children deserve. We truly do God's work when we advocate for our child's best interest and we become our children's miracles. Our children's miracles may be small on the grand scheme of things, but they are huge to us. We know how to embrace the smallest accomplishments. We know the absolute joy it brings in watching a 7-year-old master toilet training. We know how special our child's laughter is, especially for a child in pain. And joyful smiles that flow over a person like a magical breeze. We know the thrill of our child when he is so proud for having been able to walk a short distance by himself, or eat something he never could eat before. All of these are miracles of our child's life, but also miracles for us. When our child is happy, it is music to our heart and soul. Our children are the most special gift from above, a precious miracle that has entered our life to teach us that life is best savored when things are taken slow, that we need to savor each moment, that we need to fully taste each morsel of happiness and even how to endure the bad days slowly and without much dwelling on the bad parts. Raising a special need child is a blessing, and many parents feel that, looking back at their entire lives, this was their most worthy accomplishment. Learning about our miracles and the miracles brought into our life by our special children makes us cherish our life more, and celebrating life and families should be something done often and with all our hearts. DENIAL... FRIEND OR FOE? Denial is often a feeling associated by professionals with the stages of grief, as a part of adjustment to our children's disabilities. I've often thought and believed that denial per se was a foe, simply because it meant that we as parents did not recover from the initial grief and could never channel those energies into working with our child and learning to live with the handicap. It also meant that the child could never count on us to be honest and open with him about his condition and could not count on us to tell him the truth. But I think it is important to go through that initial denial stage, because it allows us time for healing and gives us a break from the overwhelming problems and situations we will be facing. If the denial goes on too long, however, it blocks a healthy acceptance of reality and creates new problems that are difficult to solve because they are based on a fictional reality. Denial of a problem erases any chance of finding proper solutions and answers, and it denies the use of our creativity and intelligence. While denial is a great coping mechanism, it can be overused and abused. Some get stuck in this phase for too long. But is denial all that bad? Sometimes it can be our friend. Some parents, those in true denial of their child's condition, may push for certain education and treatments that others who had accepted the reality of their child's disability might not have attempted; hence, in many cases, improving their child's life greatly. At times even with those parents who readily accepted the condition, denial can resurface as a way to cope with their depression or a defense mechanism to help them through the difficult times. To help them forget, even for just one day, all of the pain and fear. Denial becomes a way to protect yourself from being overwhelmed by anxiety, and it can be an extraordinarily effective defense. Parents of special needs children have very extreme demands on their resources-personal, emotional and financial. They have a lot to juggle on top of all of the other things that everyone has to juggle. That may be the reason so many parents seem to cycle in and out of levels of denial as necessary-to allow them to do what has to be done. Maybe at times the reality is that we need denial. SURRENDER One of the most challenging aspects of parenting a child with a disability is surrendering to the fact that our child's condition is one we cannot control. Surrendering does not mean that we are defeated, but, put simply, that we are completely facing the fact that our child may never talk, walk, have a day without pain, go to college, go to work, or have children of his own. Embracing these feelings can set the tone for the future because acceptance is important for our well-being. It is important for our children 's well-being as well, because our children sense our sense of acceptance and grow up with confidence and understand why they are different. That can make all the difference in the world. That doesn't mean that we don't have our days of anguish and sadness. It just means that on the whole we accept our children for who and how they are and love them unconditionally. Once we surrender to this fact, we are opening our minds and hearts to the concept that we have other choices, other things we can control. Remember that poem " God, give me the serenity... " ? Yes, this is about accepting the things we cannot change, having the courage to change things that can be changed and, of course, the wisdom to know the difference. Most parents I know do not have the time or the energy to change or try to change anything. They do not want to hear that they can become advocates, or that they are brave, or special, or that they are pioneers-experts on their child's disability. They just want to be normal, to lead a normal life. No matter how we slice it, truth be told, we are and always will be all these things. We deserve those flattering adjectives simply because we have to live our daily lives in a different way from other parents. We cannot take the regular advice given to other parents; we have to modify them to fit our needs. How about articles in parenting magazines? Most of us do not subscribe to them because we simply can't relate. Change things that can be changed-what does that mean? It means that we can change the way we care for our children, fight the good fight against the school, insurance companies, government programs and the like. It's true that it's not fair. Not only do we have to spend many hours a day caring for our children, we have to spend countless others writing letters or making phone calls just to get a prescription or a referral. It can also mean that we can help others. We can write books or join support groups to encourage and inspire others. We may not be able to change the future and help our children walk or talk, but we can improve their and our existence in many different ways. LESSONS OF LOVE Before our special children came into our lives, caring for a special-need child may have seemed like a lot of work. Indeed, special-need children require a lot more attention and caring than any other child. We will probably need to feed our child well beyond age 1; either help or completely dress our 10-year-old, help him with the bath or carry him everywhere the wheelchair does not fit; and attend to his every need, as there are many things these children may never be able to accomplish themselves. What pushes us forward, gives us the energy and makes it all worthwhile is the completely unconditional love we have for them. We would walk to the end of the earth for a cure and completely surrender ourselves in caring for our children. Is this an innate quality or do our children teach it to us? Most parents love their children in a selfish way: They enhance our lives, make us relive our youth, give us an opportunity to brag. New parents of disabled children often wonder in what ways we will be able to love a child that deviates from that perfect dream. Time, and our children, will teach us the true meaning of love. Certainly parents had particular feelings toward disabled individuals before they became parents of one. Some might have always had protective and warm feelings towards the handicapped, while others might have felt uncomfortable in their presence. Having a disabled child inevitably changes those attitudes, even the most negative ones, into positive ones. Many incorporate some positive experience they had with the handicapped into their lives, while others will feel terrible for perhaps being mean or cruel to them, which is something they will need to learn to live with or somehow make up for. When all is said and done, nothing is more precious and loving than caring for our children. There is no deeper love than sitting by the bed of your child for hours to make sure he's okay. There is no deeper love than helping your child get dressed or changing his diaper (even if he is 7 years old). There is no deeper love than placing food gently in his mouth or preparing the feeding tube. While some parents may feel overwhelmed at first, they will soon learn that is what love is all about. And since most mothers do end up taking care of their children full time, I'd like to share an old saying that goes like this, " Some people think we put life on hold to raise a child, but we know that to hold a child is life. " CONTROL Having a disabled child means that we are constantly struggling to control something. Sometimes we are successful, but other times things are not within our power. Our control issues are basically focused on making life resemble some sort of normality, whether it is regarding your child's life or your own. We are in constant conflict and always fighting. Who are we fighting? Who is our enemy? The answer may very well lie within us. Are we our own worst enemy? I' ve seen many parents making mountains out of mole holes and causing themselves undue stress over things that would best be overlooked or just dealt with as quickly as possible without much dwelling. We have enough things that cause us stress without blowing things out of proportion. Yes, it is indeed easier said than done, and this is a realization that might take years to take in. Truth be told, I used to be one of these people. I used to let everything bother me. If an agency refused services for my child, I used to leave the nastiest messages on someone's (anyone's!) answering machine, just to get things off my chest. If a relative or friend would sit in judgment because my child was not potty trained yet, I used to literally blow up. That went for people who were inconsiderate and not understanding about my child's severe condition. I made many enemies, and many people hated me for it. At the same time I felt I was standing up for myself and for my beliefs. While that may have been true at the time, it took my energies away from what was really important and needed my full attention. My child has taught me to be more forgiving, to let things shrug off my shoulders, not to let things bother me so much. What will always cause me stress and make me feel the need to control it somehow, someway, is my child's health. I believe it is a good thing, as I am focusing my worries in the right place, and my child's life depends on it. Other things that are not so important, however, I have learned to deal with in such a way that they do not become real life struggles and take my focus away. They might be dealing with the day-to-day struggles of getting my child to do simple things, like take off his pants, or brush his teeth; or teaching him how to open the refrigerator; finding time to care for the other children; being frustrated about the system, or criticism that comes our way from other parents, relatives or friends; appealing the denial of services for our children, or the latest power struggle with the advocacy or support organization which we belong to. The element of control is a human characteristic, and it's best if we realize sooner than later that we cannot control everything. We cannot control other human beings, their ideas or convictions, and we can only control a certain part of our children's conditions. Instead of wasting time being worried and struggling with things that we cannot control, our energies are better focused on what we can control, what we can be effective at changing to better our children's lives and our own. THE HERE AND NOW Parents of children with special needs don't have the luxury of dreaming about their child's future like normal parents do, which is perhaps one of the greatest losses of all, and a loss that needs to be recognized and understood. We truly do not know what the future may be like for our child, and the normal dreams of a son that would become a doctor or the daughter who will become a lawyer are replaced with other, more simple dreams. Simple dreams are defined by the most basic human aspects of our lives. We may simply dream that our child will be happy, or that our child might stay healthy as long as possible. We may dream that he or she might graduate, even perhaps attend college, and in the extreme that he may find someone to love, if that is possible. While it is true that parents of healthy children dream of these things too, they are not as clearly defined and as specific and full of hope as what parents of special need children dream. While some of us can still dream of a future for our child that is somewhat in the normal range in the grand scheme of things, unfortunately, on the other end of the scale, some of us may fear that our child might not have a future at all, because the condition can and will be lethal. For these parents, there is no future to daydream about and the here and now, living for the moment, becomes the most important aspect of their child's and their own lives. Others live in a sea of uncertainty when it comes to wondering what the future might have in store for their child-wondering if the adult with the same condition we met yesterday is a mirror to our child's future life, or if it will be better or worse. The future, which is usually seen as a peaceful place, becomes a scary place, a place we don't even want to think about. These parents are probably better off living in the present, and not projecting too many fearful possibilities onto the future, into the unknown, because, simply said, what might be may not even come close to what will be. Living in the moment accomplishes many things-things that help us enjoy every moment, which in turn helps keep us healthier and happier in general. As Anne Lamott once said, " We do not need to see our destination, or everything that will pass along the way. All we have to see is two or three feet ahead of us. " Silvia Lawniczak is a freelance writer. 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