Helpful writings (Welcome to Holland & The Special Mother), faith and how to interact.....
Below, I copied the first two writings that spoke huge peace and appreciation to my heart. I hope if you are a parent, grandparent, sibling, friend or caregive to a special child, these give you hope and help. The second is entitled The Special Mother, but it could also relate to a father, grandparent, etc. If you are a friend of ours or someone who found us and is just browsing, reading the two pieces below may help open your eyes to the reality of the world of special children, and in particular, the way these families may feel. Many times I hear people speak of how they feel awkward and do not know how to react to people who look or act "differently" than the average person. Inadvertantly, people choose to stare....stare.....and either not say a word or say things that make them seem like they are trying to diagnose or feel sorry for the person. Here's what I would like you to know if you think you may have or may in the future react this way. Come up to these people and talk to them. Ask their caregivers the questions you have, and be interested. And please teach your children to do the same....tastefully. Don't be afraid. Don't be nervous. We are real people too. We have feelings like you, and so do our kids, and sometimes the worst thing you can do is ignore....ignore the "differences" or "abnormalities" of visual or behavioral nature. For some of us, facing up to it, answering questions, seeing someone loving interact with our children is beautiful. Disclaimer: if you do the above things and some mom gives you a fist in the face or a really dirty look, know she is in the minority!!!!! And I am not responsible!!! Please read on as I share these two pieces as well as a few other very personal, hopefully uplifting topics!! Godspeed! -Clara-Leigh
WELCOME TO HOLLAND
by Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
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 guide books 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! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy 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 for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all 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 had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very 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.
by Erma Bombeck
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."
"Forrest, Marjorie; daughter. Patron saint, Cecelia."
"Rutledge, Carrie; twins. Patron saint, Matthew."
Finally He passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"
"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".
"And what about her Patron saint?" asks the angel, his pen poised in mid-air.
God smiles, "A mirror will suffice."
Our Faith? Our Father.
Christ alone. That says it all. This journey has been as beautiful as it has been difficult. Throughout the times of uncertainty and desperation, God was with us, and had his hands upon our family. I love to share the spiritual experience I have had these past three years. Of course, my journey with Christ has been traveled longer than I can remember, but the past three years have been the most poignant.
When I was expecting Garrett, he was our third pregnancy, and everything with the first two had been fun, easy and uneventful. Garrett was heading the same way, but in the second trimester, I was given some sort of intuition about this being a special child. I did not feel that he would not be living or have a tragic end, but rather I felt that this child would need us in a different way than our first children. "Special" is the simplest way to describe the feeling. The moment he came into our world in July 2005, I asked the doctors and nurses if he was okay. They were all so cheery and happy at the sight of this very chubby, plump cheek, heavy little boy!!! But I kept asking. Finally, after I was reassured several times that all was well, I dropped it and truly fell in love all over again. As for my feelings about him during pregnancy, I shared them only with my mom and my husband. Both thought I was being hormonal, as pregnancy can do that to me! SO when things began to unravel with Garrett's health in the late summer of 2006, I never once felt panic, pity, or truly helpless. I looked back and realized that God had prepared me for the fight. He had given me insight so I would not be surprised or blind-sided by the possible scary things ahead.
While my saint of a mother and I were in Houston at Texas Children's Hospital November and December of 2006 with Garrett admitted and undergoing test upon test and observation daily, I received so many cards, flowers, stuffed animals, and well-wishes for Garrett and our family. I remember clearly how after Mom would leave to go to the loft apartment our cousin in Houston so generously loaned to us, it would be quiet as the neurology floor's patients settled into another night. I would get Garrett to sleep and then read or watch television to wind down. Then I would crawl onto the bed beside Garrett's bed, call my husband, and pray. One night in particular, I felt a bit more burdened as we had been given the choice about some procedures Garrett could have to make his GI and feeding issues possibly improve. I felt like I was not the expert who could make the decisions even though the doctors had left it up to me. But the most amazing thing happened. I tried to pray and COULD NOT!!! This had never happened to me. I admit there are lots of times I DID NOT pray when I should have, but this was different. No matter how many times I tried to let the words flow through my mind, I could not get past, "Dear God." I knew that our church family, our family, our friends from around the country had extensive prayer chains lifting Garrett to God's care, but it was not until that moment that I realized how powerful all those prayers were. I felt tears well in my eyes as I realized that so many were praying for Garrett and our family that God was giving me the night off!!! I literally felt the prayers surround us in that moment, healing and comforting, taking all of our cares and concerns and placing them at God's feet FOR ME!!! It was so powerful!!!
YOUR JOB: THE ADVOCATE
I will never forget one night at Texas Children's Hospital standing face to face with a doctor many years my senior and disagreeing with some of his ideas about some testing for Garrett. I felt scared, disrespectful (although I was very respectful in tone and words), and, well, nervous. I made my case and corrected him on some background he had on Garrett that was not correct. He had to walk away to answer a call, but then he came back to Garrett's room to ask me to step out into the hall to speak in private. He gave me the biggest boost I had experienced in years. He told me that I had done my homework and made a very strong case for testing I wanted to see done, and he said that Garrett was lucky to have a strong advocate. "You are right. I will schedule both of the tests you have researched and recommended tonight. Keep it up, Mom. He's lucky to have you. You are doing a great job." These were his parting words as he shook my hand and smiled. It was then that I realized how important my job is. This brilliant, well-trained, well-published physician at one of the top three children's hospitals in the United States had LISTENED TO ME and agreed with my ideas. It's not because I am smarter than average for sure, but I followed my instinct. ADVOCATE!!!! If my only true purpose here on earth is to advocate for treatment for my son, then so be it, and this physician gave me the confidence I needed.
So to you, BE THE ADVOCATE. If you feel a hunch, follow it. If you want to hold off on a procedure to research, then is possible and safe, do it!!! If you want a second, third, tenth opinion or want to see a world famous specialist in a certain area, then DO IT!!!!! You cannot go wrong following the inclination and emotions God places in your mind and on your heart!!!!
Our Motto
"Your child may have an illness or disorder, but don't let it have your child."
I meet many parents online who are beginning this journey with realization of missed milestones, growth chart curves going downhill, test upon test, doctors' visits, no answers, and sometimes very harsh realities. Oh, the uncertainty and the coldness of the possibilities. It is impossible to put into words.
When I meet a mom or dad just entering this phase or even a parent who is going through a slump in all of the hurricane of thoughts, I remind them that while their child may have a problem, but if they let the problem, have the child, they will be consumed with worry, guilt, doubt and fear and miss the SIMPLE, BEAUTIFUL, DAILY OPPORTUNITY to love, cherish, and enjoy the child. This has been the most memorable learning experience for me. Watch those little hands and marvel in their tiny perfection even if they cannot reach for a toy when they should. Gaze into those shiny eyes, even if they are droopy or gazing into another world. Talk to him and read to him even if he will not sit still or does not seem to care if you are saying anything. HOLD AND HUG....even when they are sleeping or screaming, or recovering. DON'T miss this chance you have to still enjoy this miracle you have on earth.
Many, many parents, especially moms, have trouble because they compare their child to "regular" kids the same age, and sometimes younger ones as ours are behind and it is REALLY obvious when we compare a delayed and small stature child with a younger child developing normally who can do or say more. Some moms also discuss people staring at their child if he or she looks "not like the other children" or had obvious disabilities or medical equipment. To this I say, "HOLD YOUR HEAD HIGH!!!!" YOU have been CHOSEN to bear one of God's special people who needs a special parent to be the love, advocate, and rock that you can be. Sure we will all break down sometimes in realization that some of our dreams we have for our children may not be attainable, BUT, you are special, too. You have been paired with this child to make a difference. When they stare, let them. Most people who stare are curious and do not know how to approach you to ask, or fear pointing out the obvious and hurting your feelings. Sure, there may be a few people out there who are rude about things. I have read about parents telling their kids to stay away from a special needs child because he or she is "sick." We all know this is rare, but extremely unfortunate. These people have to be ignored, and you should feel pity for their shallow ways. And of course, some of this is medical ignorance.
