On Sam's 9th birthday I got really brave and I gathered family together to help create a vision or path for Sam's future. To see this path go to the right side of my blog and click on Path Planning for Sam's Future. We brainstormed, we voiced our concerns and worries, we shared our thoughts and we jumped into the process of dreaming and planning for Sam. That in itself is a huge step...because when you give birth to a child with special needs or your child suffers a life changing illness or injury your dreams for them are often shattered. Your life takes a drastic turn and you feel like the weight of the world has been dropped on you. And it is not just your dreams for your child that change. Your life has been forever changed.
I am thankful that the Lord has always helped me view my life in the "glass half full" scenario. When people have asked me in the past "Do you worry about Sam's future?" My explanation has always been that I take life "one day at a time" and that worry is a waste of time. Although Ben and Danielle do not face the medical, physical and cognitive challenges that Sam has I still don't know what their futures will be like either. Life happens and as the Lord has demonstrated to me in many different ways...I'm not in control. I do realize that planning/preparation/time are all areas that significantly increase in scope when thinking about Sam's future versus Ben's or Danielle's. But that isn't the part that has me tied up in knots.
The part that has me tied up in knots are all the decisions I have to make for Sam and how do I know if I'm making the right ones. I have always been of the mindset that I will be able to figure out things for Sam through his life experiences, much the same way you would do with any child. You give them the experience of trying a sport or taking karate and if they like it you continue to pursue it. If they hate it or dread going you try something else, but you keep on trying until you find something they like to do or a way they can do it and feel good about it allowing them to feel good about themselves or what they have accomplished. I have never been the type of parent to make my child do something if they hated it because I thought they should do it. Now don't get me wrong that doesn't mean I haven't had them try things that they did not initially show interest in. I like to encourage, even push a little, okay sometimes a lot but I rarely demand. I try the best that I can to read my children, understand the struggles they face and assist them with coming up with strategies for success but it is so much more difficult when it comes to Sam. Let's just consider his recent diagnosis of hip dysplasia and Perthes. I have spent countless hours trying to explain to people that interact or work with Sam how Down syndrome, his brain injury, apraxia, his respiratory issues and hearing loss affect him. I don't know if I even understand all of that and have explained it very well. Now I can spend a few more hours trying to explain hip dysplasia and Perthes.
Jeff and I originally thought as many others did that this diagnosis requires a surgery like when you get your tonsils out and then you are good to go. But as I researched Perthes and hip dysplasia I soon came to the realization that this was going to be another life altering and life long challenge which even with a positive outcome from surgery could lead to arthritis or complete hip replacement.
There is a saying in the Perthes community that "Perthes will do what Perthes does". I take this to mean that you can address Perthes with surgery or treatment but it will continue to go through its stages of progression and nothing is definite. Every child's journey with Perthes is unique to them. Sam had surgery to address first his hip dysplasia and to put the femur back into the hip socket along with building a better socket. This better structure should allow his Perthes to go through it's stages of die off and and then absorption of the dead bone and finally regrowth. His surgeon created a pocket for the regrowth. The regrowth is a process in itself, an estimated 3 year process where his body will lay down new bone and we hope and pray it lays down enough and it grows back in a desirable shape. Hope and pray, two words that seem to define much of Sam's journey.
As I try to wrap my mind around how Perthes will continue to affect Sam I decided to go back to my best resource, the Perthes listserve. Since Sam is not able to answer questions I asked them to ask their children a series of questions to help me understand how Perthes affects them and hopefully in turn I can figure out the best way to help Sam. Here is what they told me.
1) Is your pain from Perthes a sharp pain, radiating pain, throbbing pain or please describe it the best you can? I think what struck me in their answers was that they all had pain of some type every day, no matter what stage they were in. Many talked about knee and thigh pain and didn't feel hip pain until it was a sharp shooting pain. Most of the kids very rarely complain of pain because they live with it every day. The best way to tell is a change in their gait or an increased limp.
2) Does your pain get greater with physical activity and if so what type of activity normally increases it? All of them responded that their pain is greater with physical activity. Physical activity being walking, bending and sitting/standing most of them have strict restrictions on running or jumping. Sometimes pain comes on from just sitting, no trigger, it just hurts to sit.
3) If you had to rate your pain from 1 being minimal to 10 being the worst what would you rate it? Most of them start the day with low pain which increases with activity during the day. Activity pushes the pain into the higher areas. Please remember that activity is the normal day to day motion not running a marathon or playing basketball.
4) How often do you take pain medication and for how long have you been taking it? Answers varied from every 4 to 6 hours to as needed to nothing because of a high tolerance for pain. Most have been taking it from the beginning stages of Perthes and on, some as long as 9+ years.
5) What scares you about dealing with Perthes on a day to day basis? Fear of falling, looking different, friends not understanding the pain issues, teachers/therapists/administrators not understanding Perthes and how it affects a person on a daily basis or thinking they are using the diagnosis to get out of things.
6) What helps you the most when you are experiencing pain? Medication, rest/inactivity or other. Heating pads, hot baths, traction, massage, changing activity (lay down instead of sit) (or walk instead of sitting), medication for quicker relief.
7) What problems do you run into at school because of your Perthes? Teachers, gym teachers and administration that do not understand the disease or the pain that comes with it and do not believe that the child can determine what they can or can not do at any given time. This diagnosis does not meet IEP standards so accommodations are not always easy to get. Sitting for long periods of time, sitting/standing issues, restrictions being adhered to in regard to gym class about running and jumping. Walking distance between classes or classes being on different floors requiring steps. Busing issues for wheelchair accommodation.
8) How long from diagnosis to present have you been dealing with issues related to Perthes? 1 to 9+ years.
9) Does your Perthes cause sleep issues? Most said "yes", regular activity causes discomfort when trying to sleep, heating pads are often used and the sleep cycle for both the parent and the child is disturbed.
10) What physical activity do you feel helped you the most? Swimming is the favorite followed by hippotherapy (therapy on horse back) and riding a bike.
11) How does Perthes affect you as a person? Most of the answers indicated that it had both positive and negative effects. Perthes like any disease or diagnosis affects the whole family. The children often feel bad that their friends view them as different or don't understand why they have limitations, the parents worry about the decisions made regarding the disease and hurt because their child is hurting. As I have learned from watching Sam's siblings and cousins dealing with any disease or issue usually teaches empathy, consideration, greater understanding of differences and appreciation of life's blessings.
12) How often do you use a wheelchair, crutches or walker in school? Depending on where the child is on their journey with Perthes they use a combination to help with pain management as needed, sometimes all the time if they are in pain others don't use them. Some use crutches or a wheel chair for in between classes or for any distance.
13) What school accommodations have been most helpful to you regarding your Perthes? Accessible busing, higher desk, higher lunch table, adaptive PE, floor wedge to stretch hip, leave class early so not bumped into by other students, pick a helper to assist as needed, all classes on one floor, okay to be late getting to class due to slower walk, no running or jumping activities, accommodations for movement in class or place to stretch out.
As I read through all of this it is a lot to think about especially in regards to Sam. Sam does not indicate pain. Even after surgery I had to determine through changes in his personality or other indicators (leg twitching, grimacing or traction positioning) if Sam was in pain and needed pain medication. Sam's reply if asked is always "No, all better". His tolerance for pain is off the charts...but pain does affect him just as pain affects all of us. When you have a head ache or back pain and your children are asking you to do things are you as open and accommodating as when you feel pain free? Probably not....so this complicates an already fine line we walk with Sam in figuring out what is behavior and now what is pain related behavior. In Sam's case due to his lack of solid communication behavior can indicate A) I don't want to do this B) I am frustrated because I don't know what you want me to do C) I didn't hear you or I didn't process everything you said D) You are boring the crap out of me E) I don't understand F) I want to....(fill in the blank) eat, watch TV, go outside...and this is all that I can think about (aka one track mindset) and since those options don't make it exciting enough let's add G) I'm in pain but I'm not going to tell you.
This decision making is compounded by my wanting to have Sam take the lead, show me the path or indicate some direction. Does that make sense? It is his life and although I realize as a parent I need to provide guidance so he is safe I often worry that when a child has special needs we provide too much guidance and take away their individuality similar to what happens as we care for aging parents. We begin to decide if they can drive, live alone, handle their finances and we begin to take away their identity piece by piece. With special needs children this process begins at birth and follows them through out their lives, I often feel like the definition of a helicopter mom. Being an "A type" personality really doesn't help with this control issue either.
And then I stop and think...contemplate Sam's journey before the diagnosis of Perthes. I have often wondered why Sam took such an interest in hiking, learning to swim and riding his bike this last summer. In the stage of Perthes he was in two of those activities were likely to cause him pain...and yet he persevered. Was this God's way of preparing Sam for what was to come, to help encourage him to push forward during his rehab and regain the abilities he acquired last summer? Was this God's way of letting me know that even when I don't know all the answers or I'm not even aware of certain conditions he is and he will guide Sam. I'm pretty sure that this is yet another lesson someone is desperately trying to teach me. You would think that as much as I have gone through with Sam I would catch on a lot quicker, I would have a better understanding but each twist in this journey seems to send me in a whirlwind and I struggle to maintain my balance.
A friend of mine gave me a little book called "One Minute Prayers for Women". I tend to open the book and begin reading wherever it opens to. Here is what I read:
He Hears Me
This is the confidence we have in approaching God: that if we ask anything
according to his will, he hears us.
1 John 5:14
Lord, thank You for hearing me. Your ears are open to the musings of my heart, the longings of my soul, and the questions of my mind. There is nobody else in my life who promises to hear every part of me. Even in my most insecure moments, I utter words I know will reach your heart. I dwell on worries my friends would not take seriously. I have fears that, brought up in daily conversations, would sound unreasonable. Yet You listen.
It is a gift to be vulnerable with the Creator. You are my Master, yet I can come to You with the simplest needs or concerns. As your child, I seek Your will and Your response. As my Father, You listen.
I closed the book, thanked God for listening, thanked God for my friend Lisa who gave me the book and I again begin to hope and pray.
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Hi Sue, beautifully written!
ReplyDeleteMaybe Sam doesn't tell you when he is in pain because he doesn't want to disappoint you. He knows how hard you work to help him achieve every accomplishment, every word, every bike ride, and every movement now post Perthes surgery.
Our boys have an innate ability for empathy and compassion. He loves you more than life itself and he sees how happy you are when he accomplishes something new.
I've always believed that our boys are the intelligent ones and are on the correct path to authenticity. We need to take a few lessons from them and not try to have them fit into our mold of society's acceptable disfunction of so called normalcy!
You are an amazing mom and Sammy is an amazing little man!
Peace and prayers to your family!
Raquel and Noah