One of the phrases I hear people say to me is "God won't give you more than you can handle" I am calling BS on this. Do not, I repeat Do Not say this to anyone, let alone the mother of a special needs child. I am here to tell you, its not Biblical, its not comforting and it minimizes my (and every other caregiver's) day to day struggle.
The Bible does not promise an easy life. John 16:33 says "33 “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” No promises about a trouble free life there! There are some words of comfort. Peace and Christ has overcome the world. Still that doesn't promise that He is going to surround us with a nice cushy bubble to protect us. When you tell someone "God won't give you more than you can handle" you are actually going against what the Bible says! We hear some phrases so many times that we just assume that they are from the Bible. In fact, they are just cliches.
As a special needs mom, hearing "God won't give you more than you can handle" is not comforting. Some days it feels like getting out of bed is more than I can handle. Because Adam is on a vent, someone has got to be in charge of listening for him and his beeping machines all night long. We are supposed to have night nursing to help with this so that David and I can get some much needed rest. Right now there is a huge home care nursing shortage in Illinois due to the IL budget crisis. We only have overnight nursing one to two nights a week. That leaves David and I to do the rest. David works five days a week and gets up at 5:30 every morning. There is no way he can put Adam to bed at midnight (even on night nursing nights, the nurse doesn't start until 11:30pm) and listen for him throughout the night. So through the week, I am that one that stays up with Adam, puts him to bed, performs his lengthy care and then listens for him to need help or a machine to alarm. I am able to doze through the night. I don't usually fall asleep so deeply that I can't hear everything going on in Adam's room. David does this on Friday and Saturday nights so that I can sleep through the night twice a week. Is this more than we can handle, you betcha! I am exhausted all week and David is exhausted all weekend. Some nights, I don't get more than an hour of sleep in a row! Having to get out of bed after not completing a single complete sleep cycle definitely feels like more than I can handle!
When someone tells me, "God won't give you more than you can handle" It feels like you are minimizing what I go through. A couple thoughts are going through my head. Grrr can I eat this person for breakfast? (If I am in Mama Bear mode) I wonder if they taste like bacon. I love bacon. Oh and coffee. I could really use some coffee right now, I am so tired. Coffee would be good. Fortunately, I usually suppress the urge to go Mama Bear. If I can't suppress Mama Bear, hopefully David is close by and he will save your life by reminding me to chill. Most of the time, my first thought is you have no clue what I can handle. You couldn't survive a day in my shoes. How about taking a 24 hour shift for me. I once had a friend who made a comment that she didn't understand why I had to always have handicap parking. She couldn't understand why I got so upset when someone took the only handicap parking spot for several blocks. We have a 8 foot ramp and I can't get Adam out of the van without a handicap spot with stripes for the ramp on the right side of the parking spot. If its striped on the left side, I can't use it. It is too hard to back into a spot when Adam's head is blocking my view behind me. I handed my friend the keys, showed her how to secure Adam and gave her a list of errands to do. I admit that I choose the hardest most difficult situations that I encounter. I also offered to watch her three kids for two hours while she and Adam set off to do the errands. She asked if she could do an errand of her own with Adam as well. Two hours later she came back and she wasn't able to get all of the errands done. It wasn't quite as easy as she had anticipated. She was a good sport and I hope that it was an eye opening experience for her. She and I are still good friends,
The truth of the matter is God does give me more than I can handle. A lot more than I can handle. He hasn't left me to handle it all on my own. God has provided an amazing group of people to support us and be His hands and feet here in a fallen broken world. Here is a partial list of what it takes for me to handle being a special needs mom to Adam:
Six doctors- a primary care doctor, a Ear Nose and Throat Doctor, A pediatric Pulmonologist, a neurologist, a Pulmonologist for Adults, and a chiropractor that helps with his orthopedic needs.
Nurses- We have one full time nurse, a part time nurse and a nurse that helps every couple of weeks.
Friends- We have so many friends that support us in various different ways. Andrew helps with Adam's care, even though he is only 16. Erin is our local emergency person and is responsible for kidnapping me when needed. Adam's friend Seth fills in with help during classes if Adam needs him. There are tons of other friends who come and go in our lives fulfilling various different roles. Sometimes bringing meals, sometimes serving our family behind the scenes.
Church- Our church family has been so helpful in jumping in during times of crisis. Often times, it's people that we don't even know that step up and say, I can help. Many pastors have given us their home phone numbers and said, "Call me" Right now we have a special pastor that makes sure our family has everything we need at church. She also takes time to meet for lunch so that the two of us can talk and laugh, and laugh some more. I include CYT/Spotlight in this category too. Perhaps they should be in the family category, though, Once you join CYT/Spotlight, you can never leave. Its kind of like a really good Hotel California. You can check out anytime you want, but you can never leave.
Family-Our parents are a crucial part of our support team. Mom and Ron will drop everything when needed to help with Adam. They also come to be available for Adam, along with our nurses when David and I take a rare respite break. David's parents are also invaluable. They help in countless ways, including dropping everything and flying up during times of crisis. Most of our family live really far away, but they help by providing encouragement and prayers.
Finally I can't forget my social media friends. I have so many friends scattered all over the US that pop in to chat, to listen when I need to vent, to keep me company when I am exhausted and I still have hours to go before my head can hit the pillow.
Finally, God has given me David. I can't even list the ways that he is involved. One of Adam's favorite parts of summer is going to summer camp at Camp Horizon down in Bloomington IL. In the past, one of our nurses has went down with Adam for the week. Because Adam uses a vent, he has to have a trained caregiver with him. His care is too complex for the volunteers at the camp. This year Adam's nurse can't go. David has had to save his vacation time so that he can go to camp with Adam. This will be an exhausting week. There will be no rest, no vacation, very little sleep, but David will do it for Adam.
So you see, God really has given me more than I can handle, much more than I can handle. But He also has given me so many people that provide the support we need to live life and to enjoy it as well.
So please don't tell anyone, "God won't give you more than you can handle" Instead say,can I join your care team? I would love to do ________ for you.
Sunday, June 12, 2016
Tuesday, June 7, 2016
Please Don't Pet The Special People, The Beginning
For a long time I have looked for an outlet to share my experiences as the mother of a person with special needs. Over the years, I have seen it and heard it all. Sometimes it is the best of humanity, other times, I have serious doubts about people. Do they really think? Should they be allowed out in public without a leash? I have finally decided to share my experiences and thoughts.
First, a little about my story. I am the mother of an amazing young man named Adam. He is the light of my life. He also has a condition called Spinal Muscular Atrophy (SMA). There is currently no cure for SMA. It is a big scary disease that is caused by two parents who each have a defective gene. You can't catch SMA and you won't have a child with it unless both parents are carriers of the gene. One parent has the gene, no worries, Both parents have the gene, you have a chance to have a child with SMA. Actually you have a 25% chance of having a child with the condition. My husband and I had no way of knowing we were both carriers of SMA. At the time that we first learned about SMA, we were hearing it come out of a doctor's mouth after we had began to wonder why our precious first born son was not walking at 16 months. It was then that we learned that our lives were going to involve wheelchairs and lots and lots of doctors.
Adam would never walk and would need lots of special and very expensive medical equipment. SMA affects the muscles that control movement and breathing. We are very lucky that Adam has a milder version of SMA. Some are not nearly as fortunate and have a version of SMA that usually caused death before age 2. Thanks to changes in technology, these kids are living longer lives now. Adam has a milder form and does pretty well. Even though he doesn't walk and now uses a vent to provide better breathing support, he is very intelligent. Most people with SMA are highly intelligent. It just seems to be part of the package.
Adam is fairly quiet until you get to know him. He also doesn't like a lot of attention. Its kind of hard to be a quiet person who doesn't like attention when your primary means of getting around is a wheelchair the size of a SmartCar and a service dog that is his constant companion. He draws people's attention every where we go. People stare and make him uncomfortable. Sometimes people decide that he is their personal good deed for the day. The walk over and try to start a conversation with him. The first thing they do is pull out their pity look and the sickening, I feel sorry for you smile. Then comes the VOICE. The high pitched, you are special voice. This is by far the most annoying thing you can do. Adam hates it and will not talk to you if you use the VOICE with him. I will remind people that he is an adult and doesn't like to be talked down to. And then they get defensive. "I wasn't talking down to him." At that point, we walk off leaving the person with their feelings hurt because their good deed for the day was turned down. On the other hand, if you speak to Adam in a normal tone, like the intelligent person that he is. You will likely get a few words from him. Don't expect much more that that. He is quiet, just like his dad. You have to give him time to get to know you.
Some people take things even further. They want to touch Adam or hug him or any other invasive activities. I once had a lady stop us in the grocery store and demand that her child hug Adam. Adam didn't want to be hugged and her child didn't want to hug him either. I finally had to tell her that I would rather not have her child hug Adam. Adam is super fragile from a respiratory stand point and the slightest cold can put him in the hospital or even kill him. In 2009, a family member hugged him with a little cold and nearly killed him. He was in the hospital for 6 weeks and in rehab recovering from Tracheotomy surgery for 6 more weeks. We were away from home for 3 months because of a hug. Please understand when I ask you not to shake his hand or touch him for this reason.
We go to an amazing church, Willow Creek Community Church in South Barrington. They go out of their way to show how awesome people with special needs are. They do special programs and theatrical productions showcasing the talents of people with special needs. They recently built a dedicated area for the special needs population of our church with state of the art resources to enable those with special needs to attend church. It really looks amazing. We have not experienced it personally. Adam is able to go to the service with relative ease. As long as we can find wheelchair accessible seating with a monitor, we are good to go. (The monitors are necessary because you can't see around the people standing during worship) That really is the only accommodations he needs. Last week, the church leadership had an unveiling of the new special needs area. There were videos showing the new space and the pastor talked about how proud they were to have made this area so that all could attend church according to their personal needs. The entire congregation was invited to tour the new space. We decided to skip the tour since it really isn't of benefit to us. And Adam hates crowds. As soon as we heard them start talking about this great space for special needs people, Adam and I looked at each other. We knew what that meant. Adam was going to be mobbed by all of the people who want to do their good deed for the day and bless the special person in a wheelchair. Its like people see him and run to him to be able to show how awesome they are to show love to the special person. This particular special needs person, doesn't want the special attention. He wants to be ignored or treated just like the rest of the people. I am sure there are some personalities that enjoy the attention. Adam is not one of them. Go about your business folks, keep moving and Please Don't Pet the Special People.
First, a little about my story. I am the mother of an amazing young man named Adam. He is the light of my life. He also has a condition called Spinal Muscular Atrophy (SMA). There is currently no cure for SMA. It is a big scary disease that is caused by two parents who each have a defective gene. You can't catch SMA and you won't have a child with it unless both parents are carriers of the gene. One parent has the gene, no worries, Both parents have the gene, you have a chance to have a child with SMA. Actually you have a 25% chance of having a child with the condition. My husband and I had no way of knowing we were both carriers of SMA. At the time that we first learned about SMA, we were hearing it come out of a doctor's mouth after we had began to wonder why our precious first born son was not walking at 16 months. It was then that we learned that our lives were going to involve wheelchairs and lots and lots of doctors.
Adam would never walk and would need lots of special and very expensive medical equipment. SMA affects the muscles that control movement and breathing. We are very lucky that Adam has a milder version of SMA. Some are not nearly as fortunate and have a version of SMA that usually caused death before age 2. Thanks to changes in technology, these kids are living longer lives now. Adam has a milder form and does pretty well. Even though he doesn't walk and now uses a vent to provide better breathing support, he is very intelligent. Most people with SMA are highly intelligent. It just seems to be part of the package.
Adam is fairly quiet until you get to know him. He also doesn't like a lot of attention. Its kind of hard to be a quiet person who doesn't like attention when your primary means of getting around is a wheelchair the size of a SmartCar and a service dog that is his constant companion. He draws people's attention every where we go. People stare and make him uncomfortable. Sometimes people decide that he is their personal good deed for the day. The walk over and try to start a conversation with him. The first thing they do is pull out their pity look and the sickening, I feel sorry for you smile. Then comes the VOICE. The high pitched, you are special voice. This is by far the most annoying thing you can do. Adam hates it and will not talk to you if you use the VOICE with him. I will remind people that he is an adult and doesn't like to be talked down to. And then they get defensive. "I wasn't talking down to him." At that point, we walk off leaving the person with their feelings hurt because their good deed for the day was turned down. On the other hand, if you speak to Adam in a normal tone, like the intelligent person that he is. You will likely get a few words from him. Don't expect much more that that. He is quiet, just like his dad. You have to give him time to get to know you.
Some people take things even further. They want to touch Adam or hug him or any other invasive activities. I once had a lady stop us in the grocery store and demand that her child hug Adam. Adam didn't want to be hugged and her child didn't want to hug him either. I finally had to tell her that I would rather not have her child hug Adam. Adam is super fragile from a respiratory stand point and the slightest cold can put him in the hospital or even kill him. In 2009, a family member hugged him with a little cold and nearly killed him. He was in the hospital for 6 weeks and in rehab recovering from Tracheotomy surgery for 6 more weeks. We were away from home for 3 months because of a hug. Please understand when I ask you not to shake his hand or touch him for this reason.
We go to an amazing church, Willow Creek Community Church in South Barrington. They go out of their way to show how awesome people with special needs are. They do special programs and theatrical productions showcasing the talents of people with special needs. They recently built a dedicated area for the special needs population of our church with state of the art resources to enable those with special needs to attend church. It really looks amazing. We have not experienced it personally. Adam is able to go to the service with relative ease. As long as we can find wheelchair accessible seating with a monitor, we are good to go. (The monitors are necessary because you can't see around the people standing during worship) That really is the only accommodations he needs. Last week, the church leadership had an unveiling of the new special needs area. There were videos showing the new space and the pastor talked about how proud they were to have made this area so that all could attend church according to their personal needs. The entire congregation was invited to tour the new space. We decided to skip the tour since it really isn't of benefit to us. And Adam hates crowds. As soon as we heard them start talking about this great space for special needs people, Adam and I looked at each other. We knew what that meant. Adam was going to be mobbed by all of the people who want to do their good deed for the day and bless the special person in a wheelchair. Its like people see him and run to him to be able to show how awesome they are to show love to the special person. This particular special needs person, doesn't want the special attention. He wants to be ignored or treated just like the rest of the people. I am sure there are some personalities that enjoy the attention. Adam is not one of them. Go about your business folks, keep moving and Please Don't Pet the Special People.
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