Friendship

Friendship

When we honestly ask ourselves which person in our lives means the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand.

Henri Nouwen

My life is greatly enriched by my girlfriends who include my friends, sisters, aunts, daughters and my mother. I am so grateful for each and everyone of them. Having good friends is life enhancing and stress reliving. These ladies are priceless and make my world adventuresome and well worth while. Having a friend who will listen, laugh and cry with you is an amazing thing.

I  think most of us would agree about the importance of friends in one’s life. According to Madeline Vann, MPH in an article titled The Importance of Friendships (www.everydayhealth.com), “Spending time with friends is fun, but it may also yield a multitude of long-term physical and emotional health benefits. Studies show that healthy relationships make aging more enjoyable, lessen grief, and provide camaraderie to help you reach personal goals, among other things. Maintaining positive relationships should rank up there with healthy eating and exercise as a necessary investment in your health.” She rates friendships as sacred as healthy diets and exercise.

Friends can be for a season or a lifetime. Common threads in life help hold friendships together and often when those threads change friendships can change or cease to exist. It’s not always a conscience choice – just all of the sudden it’s been months since you have spoken to someone. And those months can turn into years. Social media can help you stay in touch but it can also hinder more personal interactions.

Often when you have a special needs child, the dynamics of your friendships can change. I tried to find research on how having a special needs child can affect one’s friendships and really didn’t find anything.  It’s probably one of the last things in the realm of special need issues to worry about. There is information about marriage and siblings but friendships seem overlooked. In my mind friendships are crucial in life and can really affect the overall perception a person has of his or her life. Many moms of special needs children feel excluded and often report losing friends after their child’s diagnosis. For me, I felt that I lost a number of friends after my son was hurt. My whole life revolved around his care and therapies and I didn’t have much time or energy to devote to friends. A few special friends stuck by me but most slowly faded into the background. It is true that even without a child with special needs many friends are just in your life for a season. We just tend to lose touch with people when we are not involved in activities where we see them regularly. Most people have such busy lives.

The isolation of raising a child with significant health care needs can be lessened by reaching out to other parents in similar situations.  Parent support groups provide natural therapy and camaraderie. We all need good support teams and people we can laugh, have fun and even cry or vent with. They can help provide empathy and understanding. To feel supported and valued is critical.  Being able to connect with people who can understand my world, the joy and pain and exhaustion really helps me.  They help me to know that I am not totally alone in this journey. I am not the only one with a child who has severe brain damage or other special health care needs. It helps to see that others have needs also. Last weekend, I had the privilege to attend a ladies night with a few other moms of children with special needs. It was so good for my soul, heart and mind to have time with them. It was a wonderful way to help reduce the stress in my life, and have some fun.   All of our stories are so different, each of our children have different abilities and challenges but we understand each other’s world. We are automatically members of this club that none of us aspired to be in but once in this so called “club of parents of children with special needs” it is not such a bad place. It’s actually a rather caring and real place to be.

I have met some amazing friends through different therapies that we have done for my son. During the therapies,  you tend to meet other like minded individuals who are tying hard to help their child or loved one. A good friend commented when we would all go to lunch with half of us in wheelchairs that it didn’t feel so different or odd when there was a group of us.  We actually all felt typical and were a huge source of support for one another. It is an empowering feeling.

I also need to connect with friends who knew me before my child with special needs. Sometimes I need that reminder of my own identity and sometimes I just need to feel like I did before this all happened in my life. So for me, my friends from before my son was born and my friends who have children with special needs, all play an important role in keeping my mind healthy and my life fabulous.

Sometimes, I get so caught up in my own world, I forget to reach out to my friends and other important ladies and let them know that I care about them too.  It can be hard to find time to hang out with friends. There are so many things to do. Our families have to come first but we should not forget our friends. I need to revaluate my role in not keeping up with friends.  I want to thank all the important females in my life – my friends, sisters, aunts, daughters and my mother!!  I value you and will work harder at maintaining those relationships.

So ladies (and guys too) don’t forget to set aside some girlfriend time (or guy time) every now and then. It’s good for the soul!

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Austin’s Story

Austin’s Story.

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Cerebral Palsy Awareness

Cerebral Palsy Awareness

March is Cerebral Palsy Awareness month. Awareness is knowledge, and education is a key element in helping people understand cerebral palsy conditions.

This issue is important to me because my son, Austin, is diagnosed with cerebral palsy due to his brain injury. When he was diagnosed I had had only a little knowledge of what cerebral palsy meant, which left me with many questions. How would this affect my son? Our lives? What does this even mean? The doctors gave me the only answer they could: Only time will tell what Austin’s brain injury would mean for him. The brain affects everything the body does. The brain controls all.

The definition of cerebral palsy, according to PubMed Health: “Cerebral palsy is a group of disorders that involve brain and nervous system functions, such as movement, learning, hearing, seeing, and thinking. There are several different types of cerebral palsy, including spastic, dyskinetic, ataxic, hypotonic, and mixed. Cerebral palsy is caused by injuries or abnormalities of the brain. Most of these problems occur in the womb but they can happen at any time during the first two years of life, when a child’s brain is still developing.”

According to the Centers for Disease Control and Prevention, “Cerebral palsy (CP) is a group of disorders that affect a person’s ability to move and maintain balance and posture. CP is the most common motor disability in childhood. The CDC estimates that an average of 1 in 303 children in the U.S. have CP.”

According to the nonprofit Reaching for the Stars, there are many misconceptions about cerebral palsy. The fact is that children and adults with CP have a wide range of varying abilities and disabilities. CP is a general term that encompasses mild, moderate and severe disabilities. People need to know that CP is not contagious, it is noncommunicable. In this sense it is not a disease. It also is non-progressive but problems with the body can worsen over time, though therapy can help prevent and even improve different parts of the body. CP is not caused by problems in the muscles or nerves, it is caused by damage to motor areas in the brain which disrupt the brain’s ability to adequately control movement and posture. “Cerebral” refers to the brain and “palsy” to muscle weakness/poor control. Although cerebral palsy is not yet “curable” in the accepted sense, medical management and therapy can help improve function, and many promising therapies and treatments are currently being investigated.

For my son, therapy is a crucial factor in keeping his body healthy and working the best it can. He has made very slow gains, but any little improvement for him leads to a better quality of life. Keeping his body in healthy alignment prevents further problems. It is really a necessary factor for his life.

Most importantly, my son and many others with CP are people first. They might need more supports or do some things differently, but are human just the same. Like everyone they need love, laughter and the right to pursue their dreams.

If Austin could talk, I think he would tell you this: “Please don’t stare at me and my equipment. Smile at me. Say hello. Even if I can’t talk, I might know much more than you think. I have my ways to communicate. Give me a chance. I am human, too. And I love to smile and laugh.”

I hope that more awareness will lead to more research to better the lives of those with CP and maybe even in my biggest dream: a cure, a way to heal the brain, which is the cause of CP. Hey, a girl can dream.

For more information go to MyChild at CerebralPalsy.Org – The Ultimate Resource for Everything Cerebral Palsy (800) 692-4453.

© 2013 Columbia Daily Tribune . All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

Posted in  on Wednesday, March 13, 2013 3:08 pm.

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Cerebral Palsy Awareness – Columbia Daily Tribune : Catching Curve Balls

Cerebral Palsy Awareness – Columbia Daily Tribune : Catching Curve Balls.

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Dear Doc

Dear Doc

In this journey with my son Austin, we have worked with many doctors, therapists and other medical professionals. Most of the professionals we have come across have been outstanding. We have had and continue to have many wonderful medical professionals on my son’s team. They have helped and guided us along the way. Most are caring individuals who really took the Hippocratic Oath with sincerity and the desire to help others.

In the midst of all our fabulous medical professionals, we have had a few, so to speak, “bad apples.” I have since learned that you can always get a second opinion and if a doctor is not willing to learn about my child and see him as an individual, I can search and find one that does. I guess I always knew this but putting it into practice can be another matter. Columbia, MO is well known for it’s high quality of local medical institutions but also boasts easy access, to two major US cities, requiring just a two hour drive, who also have great pools of medical professionals. Our central location gives our residents many choices for medical care.

We recently had an unexpected experience with a doctor. We have been spoiled by such outstanding doctors that it came as quite a shock to me. This doctor seemed to not listen about my son and I felt that he put my child into a category. I really felt unheard. I left his office feeling very upset. After some reassurance from some other important professionals in our lives, I have decided to seek another opinion and have an appointment to do so. This choice to obtain another consult gave me back some empowerment and the strength to know that I need to listen to my gut. This experience left me wanting to write a little letter to health professionals and the new ones coming into the field. We can all use reminders now and then.

Dear Doc,

Please see that my child is an individual. We came to see you in search of answers. Listen carefully to what we, the parents, have to say. In listening you may solve or discover the answer or problem. Please don’t assume anything, ask us. We do know him best. The listening can really save a lot of time and enable us to ensure the best possible care for my child. My child is a person who is important. Include my child in the conversation even if he can’t talk.  Be willing to look at new alternatives and try to keep an open mind. Please don’t put my child into some category of individuals – he is unique and has his own abilities and disabilities. Please investigate and listen before making any assumptions. Communication is key.  We have come to see you because we need your expertise but don’t talk down to us or act superior to us. We need to be a team that works together for the good of my child. Mutual respect and concern are at the very heart of a good doctor patient-parent relationship.  Thank you Doctor for all that you do.

Sincerely – A parent who is a tireless advocate for her child.

And parents, TRUST your INSTINCTS. They are a powerful guide.  If you have a bad feeling about something or just know something is wrong and the medical professionals are not listening don’t give up. Listen to your gut and keep going. Go to another doctor or the ER if needed.  Find and search for what your child needs. You are their greatest advocate. You are their voice. Doctors are human and can make mistakes. There is nothing wrong with seeking a second opinion! Because ultimately it is up to us to protect our children. We are the ones in the trenches.

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Dear Doc – Columbia Daily Tribune : Catching The Curve Balls

Dear Doc – Columbia Daily Tribune : Catching The Curve Balls.

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Sleep is Overrated – Not!

Sleep is Overrated – Not!.

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Sleep is Overrated – Not!

tp://www.columbiatribune.com/blogs/catching_curve_balls/sleep-is-overrated-not/article_6a78a1be-6000-11e2-b51d-0019bb30f31a.html

Sleep is overrated … not!

Parents around the world are sleep deprived. Every parent expects little sleep when parenting a newborn, but the real shocker is how much sleep deprivation can continue throughout parenthood.

I have a confession to make: I sleep with my son. It’s a long story that led up to him sleeping in my bed, but I feel safer knowing he is there beside me. If he has a seizure, I am there to comfort and take care of him. If he gets sick or something is wrong, I am there. Brain injury can do strange things to a person’s sleep patterns, and he can wake up in the middle of the night ready to party. Austin’s party is kicking his legs and babbling very loudly — very cute but hard to handle at 3 a.m. I have discovered if I change his position and turn him on his side he often will go back to sleep. This makes his sleeping more effective and I feel better being near him rather than hearing him talk half the night in his own bed down the hall. I have such peace knowing he is right beside me.

I didn’t think I would have been the bed-sharing type of parent, but you never know what life will bring you. We have to be flexible and understand that each family and circumstance has different dynamics and issues.

Abby, my eldest, potty trained at 2 years old, which started her waking at night to go to the bathroom. She had always slept in her own bed (except as a newborn; she slept in a bassinet by my bed) but with her night wakings she wanted to be close. My husband and I were OK with her midnight arrival in our bed. However, once I became pregnant with our second child, I worried what I would do with a newborn and Abby in the night. So, we created a compromise and Abby was allowed to come into our room in the middle of the night and sleep on a pallet of pillows on the floor. As she became older, I told her that she didn’t even need to wake me; she could just come in and lie down. In time, I think she got tired of sleeping on the floor and she started sleeping all night again in her bed. I feel it gave her comfort to know that she was welcome, though, if she needed us.

Our second daughter, Amber, was a better sleeper as a young child and currently wants her own space like all preteens and teenagers. Teenagers can really impact your sleep. They want to stay up late! The struggle now is trying not to let them stay up too late. Nights that school is not in session, our girls tend to be night owls. I typically tend to be a late night bird myself. I have had this problem most of my life and my own mother agrees.

So last night, I stayed up too late on my computer. I climb into bed at about 1 a.m. and a funny smell engulfs me. Oh no. Austin pooped. Poor guy had fallen asleep with a poopy diaper. Parenting fail. So I try to change him without waking him, but of course it doesn’t work. So now he is up and wants to party! Again very cute, but I am oh so tired and have so much to get done in the morning. I kiss on him for a few minutes and tell him how we need to sleep. He is not buying it, so finally I turn him over on his side. At some point, somehow, we both fell asleep until 6:50 a.m., when my daughter Amber comes in to have a before school morning snuggle. I love snuggling with my kids. One of the best moments in life.

I think all parents have plenty of sleep-deprived times, and parents of special-needs children often have even more challenges in getting enough sleep. I am fairly blessed that Austin sleeps pretty well these days. It has been a long journey and struggle to get here though. I have friends whose children with brain injury need constant care at night or medicine very early in the morning, and my heart goes out to them. What are your challenges with sleep?

Well, in my sleep-deprived state, I will keep this short because you might be reading this close to bedtime and we all need a goodnight’s sleep. I am going to try for that. If only I would learn to go to bed earlier, maybe tonight. Sweet dreams.

© 2013 Columbia Daily Tribune . All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

Posted in  on Wednesday, January 16, 2013 11:16 am.

Posted in Posts by Jenny to Tribune Newspaper | 3 Comments

Christmas Curves

Christmas Curves.

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Christmas Curves

Christmas curves

By JENNY WADE

Posted December 12, 2012 at 3:14 p.m.

It’s Christmas time again! Seems like last Christmas was not that long ago. I, like most of you, have been very busy this month with holiday preparations. It’s amazing just how much needs to be done. So in all this seasonal busyness, I neglected to generate ideas to write about this month. I didn’t have any. So I asked my husband and daughters and they all expressed in one way or another that I should write about Christmas. In December that is the main thing on everybody’s mind: Christmas.

One of my favorite parts of being a parent is watching the world through my children’s eyes; seeing their faces light up or happiness in their heart. The joy of Christmas has a whole new meaning with children in your life. When my girls were little, I wanted them to feel and see the magic of Christmas. We would go to church for a Christmas Eve service and then spend time with our extended family, usually at one of their houses. It was such a special time. Excitement and joy were in the air.

Then along came precious Austin, who drastically changed our lives. A child with special needs can impact and/or alter family traditions.

Until last night, when my husband mentioned how having a special needs child has changed some of our family traditions, I hadn’t thought much about it. I guess it has become our life and some of the smaller changes are less noticeable until I sit and think or write about them. Our family has had to change the way we celebrate Christmas. Now, we usually stay home and our extended family comes to us. We are blessed with a fairly big family, and it can get quite hectic in that beautiful crazy way. We have not attended a Christmas Eve service in many years; it is just too much to get everybody ready and out of the house. It is less hectic and more peaceful for us to be at home. However; most of the important aspects of celebrating Christmas are still observed: spending time with family, opening presents, special desserts and food, worshiping the Lord and just being together. My father still reads us his yearly Christmas Story. It is a tradition that has endured since my childhood.

Austin’s first Christmas was just two weeks after he had surgery to put his left bone flap from his skull back in his head. The surgeons who saved his life removed the left bone flap of his skull because they knew his brain would continue to swell after his life-saving brain surgery. They did not want his skull to further suppress his brain. After a severe brain trauma, the brain often continues to swell. So they put the bone in the freezer at the hospital. It was an eerie feeling to know that part of your child’s skull was not in his head, but in a hospital freezer. The surgeons had to reopen the incision on Austin’s head to put the bone back in.

That was probably the hardest Christmas, but yet joyous that our son was still alive and now had the bone back in his head. He finally started to sleep a little better. I guess he felt more put together. That year we started Christmas at our house with our extended families. As Austin has grown, we have kept with this tradition. It is much easier for us to be home with all his equipment and supplies.

Austin needs totally daily care and is in a wheelchair. It is quite a production to take him out and about, and sometimes it can seem overwhelming. Do we have his medicine for when he needs it? Do we have food for him? Purified water? Diapers? A change of clothes? Extra tube-feeding supplies? The tube-feeding pump? His bag? We also have to lift him up in his wheelchair into our van or bring out the heavy duty, hard-to-carry metal ramp to put his wheelchair in the van. It is quite a production. If I have someone to help, it is much more doable. Then once we get somewhere, we have to make sure things are wheelchair accessible. It isn’t until you need it that you notice there are still many places that are hard to maneuver or impossible to go to in a wheelchair. Most homes today are still not constructed to deal with mobility equipment.

The hardest thing for me about the holidays is my son will not be running around, eating Christmas treats and playing with his cousins and toys. He is not able to understand what Christmas is. My family will not experience the joy of watching him open presents. He is simply not able. His sisters will open them for him and he might hold a little wrapping paper, but not for long because he will try to put it in his mouth. Everything he can grab goes straight to his mouth.

I am really not trying to feel sorry for myself about my son at Christmas time; it’s just the reality of our lives. Sometimes it smacks me harder in the face than others. Sometimes writing about it is very therapeutic for me.

I will mostly contend and rejoice in the little things my son can do. He can look at the Christmas lights that we strung along his specialized bed, and he seems to watch some movies on his portable DVD player, even if he only catches a few movements on the screen. He may not understand the movie but I know for sure that he enjoys the sounds. But maybe — just maybe — he knows so much more than he can communicate with us.

I will totally love seeing the excitement in my girls’ eyes. Now that they are a preteen and a teenager, Santa is not important, but presents sure are! It no longer works to tell them they better behave or Santa won’t come. That stopped long ago. They are turning out to be wonderful young ladies though. I have such joy in them.

Life gives us curve balls and twists and turns, and we just have to try and make the best of it and hold our chins up. I intend to enjoy Christmas with my nuclear and extended family. Being together and celebrating the birth of Christ is really what it is all about.

If you have a child with special needs, what traditions or customs have you had to change or alter?

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