December 23rd. It seems like such an ordinary day. It's the day before Christmas Eve and two days before Christmas Day. For all practical purposes it is really just another day. I once heard December 23rd referred to as Christmas Adam. Why Christmas Adam? Because Adam came before Eve. So if Christmas Eve is December 24th, then the day before must be Christmas Adam. I have no idea who came up with this. Since my son's name is Adam, I think its cute.
Christmas Adam became a very special day three years ago. It started out as a very scary day. My step sister Amber was pregnant with twins. She was just 31 weeks and had a really bad cold. During a really bad coughing fit her water broke. The precious boys were in danger. She lived quite a way from a hospital that had a NICU that could handle such tiny tiny babies. Fortunately they were able to get her to a hospital in Indianapolis with a NICU before she had the boys. The boys were born very tiny. One three pounds and one tiny little peewee right around a pound (sorry I don't have the exact info) This was our very first Christmas Adam miracles. Those tiny little guys were born fighters. Today they are adorable three year old toddlers.
Yesterday was another Christmas Adam. December 23rd rolled around. Rumors were flying that this was going to be a tremendous day for a certain group of people. This group of people have been waiting for a miracle for a very long time. 2016 has been a banner year for the families of people with Spinal Muscular Atrophy. Research has come a long way and a treatment for SMA had been submitted to the FDA. Everyone was pretty sure that it was going to be approved for children with Type 1 SMA. The research had proven that giving these kids, who frequently die within months of birth, this new drug was life changing for them. The disease was being halted and many have made miraculous recoveries. We just weren't sure if the FDA planned to approve the new treatment for all types of SMA. There had been research to show benefits in other types of SMA, but would the FDA still approve it across the board. All day long Friday, I kept checking Facebook, waiting for the announcement from Biogen that the new drug Spinraza had gotten FDA approval. Every time I looked, nothing. Finally as I sat down at church to enjoy the Christmas service, I checked Facebook one last time. I try not to mess around on my phone at church. God deserves all of me. I quickly opened Facebook and there it was! Spinraza approved for all types of SMA. I quietly screamed YES! My husband glared at me and I showed him the screen. The lights dimmed and tears fell from my eyes. All I wanted for Christmas was Spinraza to be approved. Now, every baby's family diagnosed with this horrible condition won't have to hear, "there is nothing we can do, take your baby home and wait for it to die". There is now a treatment, a hope, a future.
Christmas Adam is a day for miracles. Every family affected by SMA in the United States received the one gift they really wanted. Hope for their child. A treatment, a future.
Today, is Christmas Eve. A day of preparation and celebration for Christmas. People will gather with their families and there will be excitement and anticipation. Tomorrow Christmas will come. The celebration of another long awaited miracle. The birth of a tiny baby, born in a stable. The Christ, The Savior, The Messiah, the hope for all of humanity came. He came wrapped in rags, lying in a feed trough. Welcome Jesus, the first Christmas miracle.
Its only right that Christmas Day is reserved for the miracle of Christ's birth. But 2000 plus years later, on December 23rd, another day of miracles has come.
Saturday, December 24, 2016
Saturday, November 26, 2016
Truly Thanksgiving
After my last post about me feeling like a very poor servant, I was bombarded with messages from God through various people. Before I share what I have learned, I want to pause a bit to explain the purpose of this blog.
I write my blog because I feel like it is my duty to use a gift that God has given me. God has given me the ability to communicate clearly to others. I feel like it is my responsibility to open a window into my life and the challenges of being a special needs family so that you can walk in my shoes. It is my hope that peeking into our lives and viewing the struggles that we face, you will be able to better understand the special needs families in your life. So many times people have told me they don't know how to act or what to say around our family. They are afraid they will say or do the wrong thing. Guess what! It happens all the time. It is not about saying or doing the wrong thing, its about the heart behind your words or actions. So many of the special needs mom's I interact with feel so isolated in life. They need you to reach out to them. Take the risk, make the ask. It is my hope that sharing with you will give you the courage to understand the special needs folks in your life.
Now back to God and the great big sermon He had for me.
Adam helped me set up my blog and he reads every post. I asked him for feedback. WHOA Nelly! We happened to be in the van and Adam and I were alone. Young Mr. Sullivan figuratively stepped up to the pulpit and began to preach. He spent the next 20 minutes giving me a sermon on "Do you want your praise from God or Man" Honestly, I sheepishly told him both. Wrong answer, I know. My little preacher man told me that as well. It really is hard to go through life truly waiting for praise from God. Can I just say it is really hard hearing spiritual truth from the same person you gave birth to?
My next message came from my dear friend Denise. Denise is my section leader at church. She and I have bonded and I love her dearly. God has placed her in my life. Sometimes I am not sure if she is my mentor, or if I am hers. I think we just walk along side each other holding each other up. We are Caleb and Joshua leading our own individual pack of Israelites into the Holy land. After Denise read my last entry, she jumped in with virtual hugs and words of encouragement on how she sees me serving others.
Next on the list to join in on the sermon was David. Now David is a man of few words. He doesn't say a whole lot so what he said meant a lot. He told me, "I read your blog, you don't need to feel guilty about me." Just a few words, but they were packed with meaning. He touched my heart.
Monday is my busiest day of the week, and the day when I am most likely to want to go hide under the covers and hibernate. On Monday (and Wednesday) Adam has a 3 hour and 20 minute biology class that goes from 6-9;20pm. This class moves fast and the teacher does not give a single break. The chairs are high and the pressure on my back and legs makes my back hurt so bad. Monday, I generally come home nearly in tears and all I want to do is grab an ice pack and head straight for the couch. This time, David risked his life by stopping me to chat at the front door. He told me he found something in the car. Next he handed me two envelopes. I opened the first one and saw a gift certificate for a manicure. I asked where it came from because I knew we don't have the money for such luxuries right now. He said that one of my Facebook friends had contacted him and made arrangements for a manicure AND a massage! (I am not going to mention her by name as I don't know if she wants her generosity mentioned. I was able to thank her via Facebook messenger) The tears of pain turned into tears of gratitude. She lives in China and I know she had to go to a great deal of time and trouble to do all of the research to make this happen. I will never find the words to convey to her how truly special her gift is and how much I really appreciate it.
Thursday nights are my nights off. David goes to Adam's night class with him and I get to stay home and rest and recover from a very busy week. Usually I talk to my mom for an hour or so on Thursday nights. She isn't online and doesn't get to read my blog. I told her about my blog and the very sweet gift from my friend. Mom and I chatted for a while and she and I discussed my feelings of inadequacy as a servant for Christ. The next day she called me for the final part of God's week long sermon. She had made a list of 20 times that she had seen me serve God. Most of the items on her list I had completely forgotten about, or just didn't consider them as acts of service. Once again, I was in tears.
This week the calendar told us to gather with family for a feast and to spend a day giving thanks for the good gifts in our life. I am truly thankful for a God that hears the anguish of one of his children and sends a whole army of people to show His love for his child. So to all of the people in God's Army who have blessed me with words and actions since my last blog post, Thanks(for) giving.
I write my blog because I feel like it is my duty to use a gift that God has given me. God has given me the ability to communicate clearly to others. I feel like it is my responsibility to open a window into my life and the challenges of being a special needs family so that you can walk in my shoes. It is my hope that peeking into our lives and viewing the struggles that we face, you will be able to better understand the special needs families in your life. So many times people have told me they don't know how to act or what to say around our family. They are afraid they will say or do the wrong thing. Guess what! It happens all the time. It is not about saying or doing the wrong thing, its about the heart behind your words or actions. So many of the special needs mom's I interact with feel so isolated in life. They need you to reach out to them. Take the risk, make the ask. It is my hope that sharing with you will give you the courage to understand the special needs folks in your life.
Now back to God and the great big sermon He had for me.
Adam helped me set up my blog and he reads every post. I asked him for feedback. WHOA Nelly! We happened to be in the van and Adam and I were alone. Young Mr. Sullivan figuratively stepped up to the pulpit and began to preach. He spent the next 20 minutes giving me a sermon on "Do you want your praise from God or Man" Honestly, I sheepishly told him both. Wrong answer, I know. My little preacher man told me that as well. It really is hard to go through life truly waiting for praise from God. Can I just say it is really hard hearing spiritual truth from the same person you gave birth to?
My next message came from my dear friend Denise. Denise is my section leader at church. She and I have bonded and I love her dearly. God has placed her in my life. Sometimes I am not sure if she is my mentor, or if I am hers. I think we just walk along side each other holding each other up. We are Caleb and Joshua leading our own individual pack of Israelites into the Holy land. After Denise read my last entry, she jumped in with virtual hugs and words of encouragement on how she sees me serving others.
Next on the list to join in on the sermon was David. Now David is a man of few words. He doesn't say a whole lot so what he said meant a lot. He told me, "I read your blog, you don't need to feel guilty about me." Just a few words, but they were packed with meaning. He touched my heart.
Monday is my busiest day of the week, and the day when I am most likely to want to go hide under the covers and hibernate. On Monday (and Wednesday) Adam has a 3 hour and 20 minute biology class that goes from 6-9;20pm. This class moves fast and the teacher does not give a single break. The chairs are high and the pressure on my back and legs makes my back hurt so bad. Monday, I generally come home nearly in tears and all I want to do is grab an ice pack and head straight for the couch. This time, David risked his life by stopping me to chat at the front door. He told me he found something in the car. Next he handed me two envelopes. I opened the first one and saw a gift certificate for a manicure. I asked where it came from because I knew we don't have the money for such luxuries right now. He said that one of my Facebook friends had contacted him and made arrangements for a manicure AND a massage! (I am not going to mention her by name as I don't know if she wants her generosity mentioned. I was able to thank her via Facebook messenger) The tears of pain turned into tears of gratitude. She lives in China and I know she had to go to a great deal of time and trouble to do all of the research to make this happen. I will never find the words to convey to her how truly special her gift is and how much I really appreciate it.
Thursday nights are my nights off. David goes to Adam's night class with him and I get to stay home and rest and recover from a very busy week. Usually I talk to my mom for an hour or so on Thursday nights. She isn't online and doesn't get to read my blog. I told her about my blog and the very sweet gift from my friend. Mom and I chatted for a while and she and I discussed my feelings of inadequacy as a servant for Christ. The next day she called me for the final part of God's week long sermon. She had made a list of 20 times that she had seen me serve God. Most of the items on her list I had completely forgotten about, or just didn't consider them as acts of service. Once again, I was in tears.
This week the calendar told us to gather with family for a feast and to spend a day giving thanks for the good gifts in our life. I am truly thankful for a God that hears the anguish of one of his children and sends a whole army of people to show His love for his child. So to all of the people in God's Army who have blessed me with words and actions since my last blog post, Thanks(for) giving.
Sunday, November 13, 2016
The Serving Heart
Last night at church, the sermon was on Serving Everyone Always. It talked about how Jesus washed the feet of his disciples prior to his Crucifixion to show us that we must serve each other rather than trying to step on others trying to make ourselves feel important.
I left that service feeling like a failure as a human being and servant of Christ. Honestly, as a special needs mom, there is nothing left of me to give to others. My 24/7 job is to take care of the needs of my son. Anything that is left, goes for trying to keep up housework and being my husband's wife.
At a recent church event, a lady asked me if I served at a particular women's shelter. I am sure she was just making conversation, but (oops, laundry just buzzed, gotta go change the laundry) couldn't she see that I had my hands full? My son was sitting next to me, in a wheelchair, with a vent and I had just fed him his supper. When did she think I would have time to leave my son, my home and travel a half hour or more to help abused women?
Other times, I have felt guilty because I couldn't join my small group (oh wait, I can't go to my small group any more because my son needs me to be with him at his night class on Wednesday nights) in serving projects. They were going to pack food for starving children. Some nights I can't fix a decent meal to feed my family because I am too exhausted to cook. In all fairness to my small group, they have not made me feel guilty, this is guilt I place on myself that I can't join them. At times, they have provided meals for my family to help when I went an extended period of time without night nursing for my son (which means I have to listen for him throughout the night, sometimes getting up every hour or several times an hour)
Family can do a great job of making me feel guilty for not serving them as well. I have been criticized for not helping with Thanksgiving or Christmas meals. I was expected to be in the kitchen helping the women prepare food, or help clean up the meal, or wash dishes. It never occurred to anyone that I had gotten up early to get my family packed for a weekend away from home and taken care of the medical needs of my son. All of this after getting very little sleep. Add to that, a three and a half hour trip to actually get to the family. (oh wait, their house is not handicap accessible so I have to carry my son around, he only weighed 35 pounds, that isn't too much too carry right?) But you don't mind mashing the potatoes or setting the table, right?
When people come to our home, I am expected to be Suzy Homemaker and have a perfectly clean house, offer snacks, make coffee, prepare a meal, get toilet paper, etc. The reality is when you come to my house, you are going to have to make yourself at home. Get your own snack, make your own beverage, grab your own toilet paper out of the closet.(oops, Adam needs me)
When it comes to feeling guilty about not taking care of others, my husband is probably who I most feel guilty about. I feel like a terrible wife. Not only does he neglected at meal times, but a lot of the times he has got to help pick up the slack that I can't get to, or am too tired to deal with. No hot breakfast before work for David, he has to make his own lunch, and sometimes he has to fix meals for Adam as well. In fact, he does a pretty good job of serving me. He usually runs out and gets me coffee and breakfast on weekends before running to his part time job. He often will run out late at night to grab me a bite to eat when he realizes I forgot to eat and am now too tired to fix myself something with protein. (I need to have protein every time I eat to help alleviate severe protein deficiencies). All of this on top of working, going to school and helping to care for Adam. (pause to help Adam again)
I love my son. I will gladly give every ounce of energy to make his life easier. I do everything he needs and try to do it cheerfully, so that he doesn't feel like a burden, (he does feel like he is a burden, and that makes me feel bad as well) I do this at the expense of my husband and myself. My body is wearing out. I have injured myself bad enough to require physical therapy 3 times. Day to day, I experience pain. But I gladly throw the servant's towel over my arm to care for his needs. Unfortunately, that is all the serving I can do.
Now for a little me time. I really want to do my nails. Oops Adam is up for the day, I can't do my nails now. I really need a manicure, but that costs money and that is asking someone to serve me. Time to put up the nail supplies until another day.
I left that service feeling like a failure as a human being and servant of Christ. Honestly, as a special needs mom, there is nothing left of me to give to others. My 24/7 job is to take care of the needs of my son. Anything that is left, goes for trying to keep up housework and being my husband's wife.
At a recent church event, a lady asked me if I served at a particular women's shelter. I am sure she was just making conversation, but (oops, laundry just buzzed, gotta go change the laundry) couldn't she see that I had my hands full? My son was sitting next to me, in a wheelchair, with a vent and I had just fed him his supper. When did she think I would have time to leave my son, my home and travel a half hour or more to help abused women?
Other times, I have felt guilty because I couldn't join my small group (oh wait, I can't go to my small group any more because my son needs me to be with him at his night class on Wednesday nights) in serving projects. They were going to pack food for starving children. Some nights I can't fix a decent meal to feed my family because I am too exhausted to cook. In all fairness to my small group, they have not made me feel guilty, this is guilt I place on myself that I can't join them. At times, they have provided meals for my family to help when I went an extended period of time without night nursing for my son (which means I have to listen for him throughout the night, sometimes getting up every hour or several times an hour)
Family can do a great job of making me feel guilty for not serving them as well. I have been criticized for not helping with Thanksgiving or Christmas meals. I was expected to be in the kitchen helping the women prepare food, or help clean up the meal, or wash dishes. It never occurred to anyone that I had gotten up early to get my family packed for a weekend away from home and taken care of the medical needs of my son. All of this after getting very little sleep. Add to that, a three and a half hour trip to actually get to the family. (oh wait, their house is not handicap accessible so I have to carry my son around, he only weighed 35 pounds, that isn't too much too carry right?) But you don't mind mashing the potatoes or setting the table, right?
When people come to our home, I am expected to be Suzy Homemaker and have a perfectly clean house, offer snacks, make coffee, prepare a meal, get toilet paper, etc. The reality is when you come to my house, you are going to have to make yourself at home. Get your own snack, make your own beverage, grab your own toilet paper out of the closet.(oops, Adam needs me)
When it comes to feeling guilty about not taking care of others, my husband is probably who I most feel guilty about. I feel like a terrible wife. Not only does he neglected at meal times, but a lot of the times he has got to help pick up the slack that I can't get to, or am too tired to deal with. No hot breakfast before work for David, he has to make his own lunch, and sometimes he has to fix meals for Adam as well. In fact, he does a pretty good job of serving me. He usually runs out and gets me coffee and breakfast on weekends before running to his part time job. He often will run out late at night to grab me a bite to eat when he realizes I forgot to eat and am now too tired to fix myself something with protein. (I need to have protein every time I eat to help alleviate severe protein deficiencies). All of this on top of working, going to school and helping to care for Adam. (pause to help Adam again)
I love my son. I will gladly give every ounce of energy to make his life easier. I do everything he needs and try to do it cheerfully, so that he doesn't feel like a burden, (he does feel like he is a burden, and that makes me feel bad as well) I do this at the expense of my husband and myself. My body is wearing out. I have injured myself bad enough to require physical therapy 3 times. Day to day, I experience pain. But I gladly throw the servant's towel over my arm to care for his needs. Unfortunately, that is all the serving I can do.
Now for a little me time. I really want to do my nails. Oops Adam is up for the day, I can't do my nails now. I really need a manicure, but that costs money and that is asking someone to serve me. Time to put up the nail supplies until another day.
Saturday, October 22, 2016
No Don't Touch
Yesterday I took my son to the movies. By My Self! Me and a 400 pound wheelchair, our service dog, my son's life saving medical equipment and my purse. Its a lot for me to do by myself. I really try not to go places just the two of us. His suction machine alone feels like it weighs a ton and my damaged shoulders can barely stand the pain of its weight. Without it, he could die. It is just one of many things that have to go with us every single place we go. My hands are full and my head is constantly focused on any situations that I need to be aware of to keep my son from danger,
You and your young child came at us while we were in between the double doors of the movie theater. Do you know how hard it is to get through a single door? Let alone double doors. Nope, you didn't rush up to help us. You were in your own little world, you and your little boy. You didn't look up at the huge black dog and see danger, You let your child get out of reach. Curious as children usually are, he went straight for the 60 pound dog at my son's side. I used my strong voice and told him NO! You yelled at me. You told me I needed a better attitude. You wouldn't even let me speak to say, your child won't stop if I speak softly. He didn't listen to you, he sure as heck isn't going to listen to me if I use a soft voice. Sadly, you have allowed him to believe that he can do whatever he wants. My hands are full, I can't touch your child. I only have a few seconds to protect my son and yours from danger. This is not the time to use a quiet voice.
You don't see the danger, but I do. Your child is out of your reach. He is approaching a strange dog. You know nothing about this dog. I know this dog is gentle and won't harm him, but what about the next dog he sees and rushes up to pet. Perhaps it will be a coyote, or a mean dog that will bite him and leave him scarred for life.
The biggest danger is not to your precious child, but to mine. Your child distracting his dog could cause injury to my son. Twice my son's dogs have pulled away for various reasons and nearly broken his tiny fragile arms. We don't attach his dog to his arms for that reason, but you don't know that. You don't care. You don't care that your son is likely covered in preschool germs and when he touches my son's service dog, those germs just transferred to the dog's fur that will be hanging out waiting for my son to tell his dog good girl and reward her with the pets that tell her she has pleased him. Those same germs that will give your son the sniffles can kill my son.
You don't realize that your words have now ruined my afternoon. My heart is broken because you refused to look at things from my perspective. You don't know how hard I try to stay calm and have an enjoyable time with my son. All you could see was the lady with the bad attitude who said no to your child. I will spend the next 30 minutes trying to calm down, trying to make the adrenaline stop surging through my body. You have ruined 25% of the two hours I have to spend alone with my son. Instead of watching the movie with him, I will be talking myself down, trying to not be angry because once again another person just doesn't understand.
The next time you see someone out with their hands full, trying to take care of their disabled family member, take a hold of your child's hand. Tell them don't touch and don't stare. If they want to know more, ask the person or the family. If I have time, I will stop and chat. But please understand if I don't, because if I am alone with my son, I have to be on high alert at all times. His life is in my hands. I can't let my guard down for a single minute. If his vent falls off, or he gets a plug, I only have 1-2 minutes to react and remedy the situation.
If your hands are free, grab the door. I guarantee you will get a thank you from both me and my son. And then I will smile and for one more second I will have one less thing to worry about. And my day will be made.
You and your young child came at us while we were in between the double doors of the movie theater. Do you know how hard it is to get through a single door? Let alone double doors. Nope, you didn't rush up to help us. You were in your own little world, you and your little boy. You didn't look up at the huge black dog and see danger, You let your child get out of reach. Curious as children usually are, he went straight for the 60 pound dog at my son's side. I used my strong voice and told him NO! You yelled at me. You told me I needed a better attitude. You wouldn't even let me speak to say, your child won't stop if I speak softly. He didn't listen to you, he sure as heck isn't going to listen to me if I use a soft voice. Sadly, you have allowed him to believe that he can do whatever he wants. My hands are full, I can't touch your child. I only have a few seconds to protect my son and yours from danger. This is not the time to use a quiet voice.
You don't see the danger, but I do. Your child is out of your reach. He is approaching a strange dog. You know nothing about this dog. I know this dog is gentle and won't harm him, but what about the next dog he sees and rushes up to pet. Perhaps it will be a coyote, or a mean dog that will bite him and leave him scarred for life.
The biggest danger is not to your precious child, but to mine. Your child distracting his dog could cause injury to my son. Twice my son's dogs have pulled away for various reasons and nearly broken his tiny fragile arms. We don't attach his dog to his arms for that reason, but you don't know that. You don't care. You don't care that your son is likely covered in preschool germs and when he touches my son's service dog, those germs just transferred to the dog's fur that will be hanging out waiting for my son to tell his dog good girl and reward her with the pets that tell her she has pleased him. Those same germs that will give your son the sniffles can kill my son.
You don't realize that your words have now ruined my afternoon. My heart is broken because you refused to look at things from my perspective. You don't know how hard I try to stay calm and have an enjoyable time with my son. All you could see was the lady with the bad attitude who said no to your child. I will spend the next 30 minutes trying to calm down, trying to make the adrenaline stop surging through my body. You have ruined 25% of the two hours I have to spend alone with my son. Instead of watching the movie with him, I will be talking myself down, trying to not be angry because once again another person just doesn't understand.
The next time you see someone out with their hands full, trying to take care of their disabled family member, take a hold of your child's hand. Tell them don't touch and don't stare. If they want to know more, ask the person or the family. If I have time, I will stop and chat. But please understand if I don't, because if I am alone with my son, I have to be on high alert at all times. His life is in my hands. I can't let my guard down for a single minute. If his vent falls off, or he gets a plug, I only have 1-2 minutes to react and remedy the situation.
If your hands are free, grab the door. I guarantee you will get a thank you from both me and my son. And then I will smile and for one more second I will have one less thing to worry about. And my day will be made.
Tuesday, July 12, 2016
Enough
My whole life I have struggled with being enough. This weekend I spent the whole weekend being not enough. I am not gardening enough, cooking enough, cleaning enough, doing enough. I am just not enough. This is the message that I have been hearing my whole life.
This constant state of not being enough is exhausting to my already exhausted, over worked body.
I am the mother of a 22 year old son in a wheelchair, on a ventilator. In order for him to participate fully in life, I have to be fully involved and tuned into his every need 24 hours a day, 7 days a week. I don't ever get to rest. I never get to shut off. I never get to not be in charge.
Never-the-less, people in my life still feel the need to point out where I need to do more. It makes me angry. It makes me feel undervalued. It makes me feel like I am not enough.
The people who seem to be saying I am not enough are the same people who couldn't maintain the level of activity that I have no choice to keep up with for 24 hours let alone 365 days a week. My husband doesn't usually make me feel this way. In fact, I am sure that he feels the same way. There is always too much to do and not enough time. My son does not make me feel this way. He asks a ton of me, more than I can do much of the time. He realizes he requires a ton of care, and tries to stay distracted so that I don't have to be getting up every two minutes to take care of this or that need. He frequently thanks me for taking care of him.
The reality of the situation is there is a lot of not enough in my life. Not enough rest, not enough time to relax, not enough help, not enough time in the sun, not enough alone time, not enough time to shower, not enough time to do the things that recharge me, not enough time with my husband, not enough escape from stress, not enough time to eat chocolate cake, not enough time to color, not enough time to paint, not enough time to devote to my chocolate business, not enough time to read the Bible (this is one of my favorite things to do) not enough time to...
The list just goes on and on.
Here is what there is enough of: Love for my son. Time for late night conversations and video games together. Time to work on his homework together (not enough energy on my part) Time to discover how amazingly smart my son is. Time to spend days together exploring Chicago in his speech class. Time to walk to 7 Eleven to have impromptu picnics of Slurpees, taco rollers for him and tacos for me. Time to go to movies, or Denny's or where ever else he wants to go for Mom and Adam Sunday date nights.
These are the things that are important to me. These are my priorities. Taking care of my son and his needs is the only thing on my to do list. Anything else that gets done is bonus. When someone tries to guilt me into doing things they feel are important, they are robbing my son of my time. When they try to get me to do things beside rest, they are robbing me of energy that I need to listen for Adam overnight when we don't have night nursing (I usually have 1-2 nights of night nursing, and hubby takes two nights. That leaves me with 3-4 nights a week with constantly interrupted dozing)
If I share some of my precious energy with you, you better appreciate it, because that means you are important to me. Because there is just not enough of me to go around.
Sunday, June 12, 2016
God Won't Give You More Than You Can Handle
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.
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.
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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