Don't Tell Me That You Understand...

     "Don't tell me that you understand, Don't tell me that you know, Don't tell me that I will survive, How I will surely grow. Don't tell me this is just a test, That I am truly blessed, That I am chosen for this task, Apart from all the rest..." 
These are just the first two paragraphs of a poem I ran across while collecting a few for a dear friend of mine who recently lost her son to the same condition that my child has. Having lost a child myself, I have surely read many helpful poems, but this one somehow got stuck in my head because it not only helps bereavement moms deal with their loss, but it spoke to me on how hard it is to deal with the general public when parenting a child with a disability.

     How many times friends and relatives, even friends and relatives of other moms or patients, think they 'know' what we go through? Unfortunately it goes farther than that. These sometimes well meaning individuals judge us for decisions we make, things we do or things we say out of despair or loneliness! I've seen it happen often in these past 10 years. People that have no clue of what a special need child's mom's day is like is not in any position to judge the treatments we choose for our children, the decisions we make for their well being and certainly cannot understand what it means to be so angry that it seems to us as if nobody cares that we vent at anyone that will listen. Just yesterday I was very upset at the new company that provides my son's supplies because after a week and 3 messages left to call me back, nobody could be bothered to call me back so I could place my order! Finally I picked up the phone and made one more phone call only to get their answering service again, so I left quite the crude message. 
Needless to say, the person that does not understand how badly my son needs these bandages, someone who never had to watch their child in pain day after day for ten years, or have to sit there hearing their cries of pain, could not even remotely comprehend my rage and surely would be prone to judge me because of it. 

     To those compelled to judge a parent about a situation they know nothing about I only have one thing to say: Exchange places with me, for one day. Just one day. For one day you will have to change my son's bandages, see my son's wounds, hearing him cry in pain, change his diaper, prepare his tube, give him his medicine and take care of everyone of his needs. He cannot dress himself, nor get a drink from the refrigerator for himself. His needs are many and constant.

     Why would this help? Because, you see, it's not pity, nor "poor" this and that which moms of special need children want. What they want is to be understood, to be given some slack when they have a bad day, and foremost, not to be judged. It's only when someone walks in someone's shoes that the light bulb turns on. Anyone willing to exchange places with me?

     The Bible says it best: Luke 6:37 "Do not judge, and you will not be judged; and do not condemn, and you will not be condemned; pardon, and you will be pardoned."     

 
Posted November 7, 2006

Does Your Child's Disability Define You?

     For many years after my son was born it was almost as if EB (Epidermolysis Bullosa), his devastating skin disorder, defined who I was. EB is all I could think about, all I could talk about, and surely all I was dealing with, since bandage changes were (and are) a daily thing, and that's all I became, an EB mom. 

     Over the years, I saw many moms like me, even worse; whose child's disability gave them a blind eye to everything else. Others would write me after only a few months or years, telling me they outgrew the support groups and they were going to leave, or would not come to the conferences or get-togethers because they said that they did not need them. Interestingly enough, just as I outgrew the need for support groups, most of the moms that have children my son's age or around there told me the same thing. We're still friends, we still communicate, but the need of a larger network is gone. I am glad that we did, because to be completely consumed by something for so long can be detrimental to our well being. 

     For years I tried to get other interests; for example I tried to re-start my love for genealogy without success, but what really did it for me is when I finally had a healthy baby. After Connor was born, something clicked in me; I was no longer an 'EB mom'. I had another child, a child that even though did not have EB, needed me just as much. Since then I successfully developed other interests, while keeping my feet grounded on helping other EB families. I have hobbies, I go work out, I have a part-time job. I don't look at my son and think 'oh, he has EB', even though his condition is highly visible and hard to put out of one's mind. Most of the time he's just 'Nicky', with his quirks and laughs, who loves his mom, dad and his little brother and who is a straight A student. 

     Interestingly enough, ever since my obsession with EB has subsided, Nicky has truly developed an amazing identity of his own. I am still very attentive to his needs, but I am no longer "obsessed" per se. I truly believe that when parents have their own interests and social lives, they and their children are both better off. When children are a parent's whole world, they find it harder to separate and become individuals. Nicky truly has his own little life now. He has new friends, he has many people that love him at school and the things his teacher tells me he does or says completely blow me away! Are we talking about the same kid? I love it.

 
Posted October 5, 2006

The Healing Power of Humor

     The calendar in my computer room just taught me something today... it said: ""A cheerful heart is good medicine." King Solomon (Proverbs 17:22). It's so true, too. After my son died and for many years after Nicky was born, I was incapable of watching any TV show that was too dramatic, it was only Friends & Seinfeld for me, and I loved Jay Leno! I simply felt the NEED to laugh. My goal during bandage changes for Nicky ever since he could understand is to make him laugh at least once, more if I am successful! I do this every time because my son seems so much more relaxed and enjoys this tense time with me when I do this, even though he is in pain.

     Humor is very healing in many aspects of our lives. Comedy helps our psyche and well being, and many studies show that scientifically it does even more than that! According to recent studies, laughter produces endorphins which lessen pain, increases production of T-cells, interferon and immune proteins called globulins and even significantly lowers cortisol levels and returns the body to a more relaxed state. It even boosts your immune system! Dr. Cousins, who in 1964 was diagnosed with a crippling and extremely painful inflammation of his body, stated that: "I made the joyous discovery that ten minutes of genuine belly laughter had an anesthetic effect and would give me at least two hours of pain-free sleep." Dr. Cousins later recovered from his condition and spent the next 20 years teaching about the merits of laughter and humor in healing.

     It should come of no surprise then when watching 'Last Comic Standing' that two of the initial semi-finalists of this season had some sort of disability. One guy had Cerebral Palsy, while one of the gals had a pronounced Lisp. They were both hilarious and were audience favorites. They made fun of themselves and I cannot think of a better way to handle their condition! I often hear from School Bus drivers, teachers and others who come in contact with Nicky how funny he is, and I am so glad!

     What can you do to find humor in your life? Anything can be funny, as I found out when I was forced to find something to make my son laugh during bandage changes. Keep funny pictures of family and friends around you, anything that will make you smile will do! If you like jokes or funny, subscribe to some of those! You like comedies? Rent or watch those exclusively. Think of something funny or embarrassing that has happened to you or a friend/relative and have a good laugh!

     The world is so serious, and it does not need to be. Adding humor to your life will allow your child to grow into a fun and light-hearted person, one that will never know the meaning of 'depression'. The end result might very well be that laughter will help everyone in your family live longer, too!

 
Posted July 6, 2006

The Parent's Marriage

     Marriage in America is already a weak preposition, as the latest statistics show that 43% of all marriages end in divorce. Throw in the mix a child with a disability and a marriage that was hanging on by a thread will probably not survive. In a study done by Robert Hodapp and Diane Krasner, families of children with disabilities showed higher percentages of divorce or separation, lower family incomes, and more single-parent households than did the families of healthy children they surveyed.

     I remember vividly how my marriage was always on the verge of collapsing before we even had children. After we lost our first baby it seemed as though we had gotten closer, and since I did not believe in divorce, I believed nothing could pull us apart. Then Nicky was born and all of a sudden everything changed. To say that taking care of Nicky as a baby was hard it's an understatement, and I did so without any help at all from anyone. Our families lived out of state or out of the country and my husband worked all the time, so I was left with the burden of taking care of our child 24 hours a day, 7 days a week, without a break, ever. I even slept on a mattress in the floor in the living room so I could be next to him in case he woke up chocking, which was often. Nicky's condition is so rare it falls through the cracks and I was unable to get the insurance or any government program to approve a nurse, respite or any kind of help. I could not get anyone to help pay for the bandages either, so I had the extra burden to disinfect, wash, re-roll and re-use the bandages as well. Every week I had countless appointments with the pediatrician, the hand therapist, the physical and occupational therapists. My husband was upset about the situation and would take it out on me nearly every day. Exhausted and depressed I remember asking my son's Physical Therapist how many marriages survive having a child with a disability and she sadly looked at me in the eyes and told me she was sorry to tell me this, but in her experience, more than 75% of children that she saw came from divorced homes.

     Crisis can bring out the worst in people, and it's in the troubled times that we all show our true colors. While a strong couple can find resolutions to a crisis, accept the diagnosis and take the opportunity to see the child in its own special light and bring out the best in its parents, couples that are not so strong cannot come together and cannot do this. Men and Women cope with this kind of situation differently as well. A woman goes through the heart break and then her nurturing nature kicks in, but a man feels like a failure. He is supposed to protect his children. How could this happen while he was on guard? He feels like he let his family down. 

     What parents need to do is try to understand each other and not read anything extra into someone's actions. Particularly men find it hard to bond with their children because they feels so helpless. In my case, I tried and tried to fix my marriage, but I was unsuccessful. While in time Nicky's dad has come to not only accept the disability but now has a near fantastic relationship with our son, our marriage did not survive. I still count myself lucky, however. I have found a man who not only accepted me but my son, his disability, and took it all in stride with a lot of love, determination and support. I thank God for sending him to me every day. 

 
Posted August 14, 2006

Doing What Makes YOU Happy

     Living day by day with a child that needs so much attention and care, can leave us feeling drained and depressed. I've always heard from everyone that moms should take time out for themselves, but sometimes that is too daunting of a task to even imagine. What is that we can do to make us happy? What can we do that won't be hard to manage, like finding a baby-sitter or taking a lot of time out our day when we don't have much to spare?

     Ever since my son was born that has been exactly my struggle: to find some distraction, something I can do that would make me happy without needing to go to some extraordinary length to be able to do it.  Clearly for me, it had to be something I could do from home. 

     My mom, bless her heart, found something that made her happy despite being stuck at home with three daughters: she became an astrologer. She took some courses, buried herself in books, and truly found something she loved to do. She even made money doing it, as she would advertise her business and invite people to come over and get their Birth Chart done by her. I know many people roll their eyes at this, but she was so good at it, and it gave her life some purpose. She is going to be 70 years old in January and she still does it, she sends me my yearly horoscope with the predictions for the upcoming year and she is RARELY wrong!!! When she meets someone she immediately guesses their astrological sign and she is right on the money 99% of the time! She is amazing. Aside her love for Astrology she has a passion for poems, she wrote hundreds, one more beautiful than the other. I am hoping to get her book published someday. If it was in English it would have already been done, but since it's in Italian and I live in the US, that's going to be more of a challenge.

     My guilty pleasure? Writing, of course, has always been something I loved to do, but graphic work is now a close second. I love working on websites and connect with people I would otherwise never get a chance to meet. I often joke with my husband that some of my best friends that I speak with live in other countries!

     It may take a while to find something you like to do that you can do from home, but the rewards are priceless. You won't feel drained, you won't feel depressed, and it's better than pills!

 
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