Twenty three years ago, we began a journey that no parent ever wants to take. We were concerned because our 16 month old son was still not walking. At eleven months he was standing at the edge of furniture and trying so hard to take that first precious step. That first step never happened. Shortly before he turned a year old, all attempts to stand stopped. He had an ear infection and he just couldn't seem to get past it. We spent the next four months trying to find out what was going on. It took three doctors in two different states to pin down why he wasn't walking. At 16 months we took him to Riley Hospital in Indianapolis to figure out. exactly what the problem was. It took us two more months to get a name for the problem.
One afternoon we got a call from one of the doctors in Indianapolis, asking us to please come to Indianapolis to get the results of all of the tests that had been run. The wouldn't tell us anything over the phone. That is never a good sign. We drove the two hours from our home in Marshall Illinois to Indianapolis. The doctor asked us into his office. He told us, your son has Spinal Muscular Atrophy. We had never heard those three words. He explained that it is incredibly rare and that most family physicians will never encounter a case of SMA in their entire careers. He said that he saw about 6 cases a year. It was genetic, and both David and I had to be carriers of a defective gene. Not only that, but we had a 25% chance of any future children having the same condition.
We would later learn that the gene that caused SMA had just been identified. It was a defect on gene 5. This defect causes a disruption of the path of nerves that send messages throughout the body. There was no cure for this condition and no treatment. Our son would never walk and would not likely live to adulthood. The doctor told us that there was a great deal of research going on in this rare condition and in a couple years there would be a cure. We were very fortunate.
Those of you who know me well, know that I take things by the horns and work for the best possible outcome. I am not satisfied being a statistic and I will not accept there is nothing we can do for an answer. I set out to find the best doctors and best therapists for my son.
Fast forward to December of 2016. I had known for a while that a new treatment was being tested for people with SMA. It was currently being tested in babies and young kids with Spinal Muscular Atrophy, mostly type 1s with the severest form of the disease. This type is fatal and without a great deal of intervention, these babies die before their second birthday, usually shortly after being diagnosed. Adam was a type 2 or Intermediate Spinal Muscular Atrophy. He was too old for any of the trials. I was carefully watching the research and the projected timeline. Even though we hadn't seen a neurologist in years, I made an appointment, knowing that this was our key to any chance of getting the new drug. In December 2016 the FDA shocked everyone by approving the new drug that would be called Spinraza for all types of SMA, not just the kids with Type 1.
Within days, I had a phone call into Biogen to find out how I could get this drug for Adam. On January 11, 2017 we met with the neurologist to find out how we could get this drug. The doctors had been caught off guard and had no plan in place for treating adults with SMA. They assured me that I would be contacted when they were ready to begin treating. Months went by and we still hadn't heard anything. In July, we went back for a follow up appointment. The doctor said those wonderful magic words, Lets do this Spinraza thing! He started scheduling Adam for a long list of tests in preparation for the procedure to administer Spinraza. In addition to getting all of the pre-tests down, we had to get insurance approval.
It took us another 8 months to find out that both forms of insurance refused to pay huge per dose cost of this medicine. Fortunately, Biogen has a program to donate the drug to people who aren't able to get their insurance to cover the four loading doses that have to happen in the first 60 days. After receiving the call from our Biogen representative about the donation, we thought we were ready to go and I waited anxiously for the date of our first dose.
It would take me another month of testing and two more trips to Chicago to finally get our dates. April 20th, Adam will receive the first dose of Spinraza via a lumbar puncture at Northwestern Memorial Hospital.
I find it ironic that it has taken 16 months to get this for Adam. The exact amount of time it took us to discover why he wan't walking. It is even the same month 23 years later.
There is very little known about how Spinraza will work in adults. Remember, we were told that Adam would not live to adulthood. There are not a huge amount of adults to use for the trials so it didn't happen. Biogen says that Spinraza will stop the progression of SMA. That is the goal of the medicine. Other people have experienced an increase in strength after receiving the medication. It is not the intended goal, but is a bonus if it happens.
On April 20th, we begin a new leg of this journey. This time the journey is filled with hope. Only God knows how Adam's body will react to Spinraza. We are looking forward to seeing how Adam's future will be impacted. The cost of this drug is huge, but for us, hope is priceless!
Sunday, December 23, 2018
Can I Pray For You?
Let me just start by saying, I believe in the power of prayer. The ability to have a conversation with the all knowing God of the universe is just so mind blowing. Our family is a praying, church going family. Over the years we have been desperate need of prayers. There have been times when the stress was so overwhelming and the situation so scary that I didn't even have the ability to utter more than a simple, God please help! In that time, we needed our friends to come before God on our behalf.
There have been times that people have offered to pray for us. I need those prayers. Our family needs those prayers. The one thing that makes both Adam and I very uncomfortable is when a strange walks up and asks to pray for us, or specifically Adam. I know their intention is good, and they think they are helping. There is only one problem. They don't know our situation. They don't know our specific needs. They take their view of the situation and pray for what they think is important.
One time, a lady came up to us and asked to pray for Adam. I asked Adam if it was okay. He said yes. She prayed that he would be healed and that he would walk. She then proceeded to tell Adam that if he believed and had faith that he would be healed and would walk. She knew nothing about our family or our faith. She didn't even know if it was important to Adam to be able to walk. She was praying for what SHE thought was important and didn't give one second of thought to what our needs were.
Early this year, we were waiting for my son to receive treatment for his condition at Northwestern Hospital in Chicago. He was supposed to have his procedure at 10:30 am and we had been there since 7:30 am since we had to arrive two hours early for lab work. We got a phone call from the staff at Northwestern saying that they had a critical situation that needed the room that they used for Adam's procedure. He would be delayed by at least two hours. I called my mom to let her know that we were delayed since she is hours away and worries. She said, "I will pray that you don't have to wait much longer." I yelled NO! They are trying to save someone's life in there and we can wait. We ended up having to wait 7 hours for Adam's procedure. The person they were working on had a stroke and they did the best they could to save his life. It was very likely that his family was sitting in the same waiting area with us while we waited for Adam's turn.
Recently, a lady sitting beside us at church asked if she could pray for Adam. I said, you can always pray for him. I was hoping to deflect her from praying out loud for him. She waited until the end of the service and again asked to pray for him. I told her that she could pray for protection from viruses like colds and flus that are so very dangerous to Adam. She was a little put off that I was telling her what to pray. Fortunately, her daughter intervened and told her not to be so pushy. She then asked his name and said that she was going to remember to pray for him. I thanked her. Its not that I don't appreciate her prayers, but again she is praying for what she wants, rather than what we truly need.
If you feel compelled to pray for someone that you don't know, please keep a few things in mind.
1. What does the person REALLY need prayer for? Ask them!
In our case, we need prayers for protection from illness, insurance to cooperate rather than fighting us over medical necessity, protection from financial hardship, and strength and endurance for David and I.
2. Consider that praying out loud may embarrass the other person.
Adam doesn't like to be the center of attention. Having someone pray out loud makes him very uncomfortable. He may not want you to point out his weaknesses to others nearby as well.
3. Check before laying hands on someone.
Adam and his pulmonologist have made a deal. Adam doesn't want to get a flu shot since he is greatly afraid of needles. He has to have a lot of blood work and getting Spinraza requires a very long needle into his spine. That is all the needles he can deal with. As a result, Adam has to promise his pulmonologist not to shake hands or touch other people when we are out during cold and flu season. The person you shook hands with 10 minutes ago, may have had a cold and just wiped their nose with the same hand you shook with. By touching Adam, you could potentially spread cold germs to him. Getting a cold can and has nearly turned fatal for Adam several times. We take precautions when touching Adam to keep him safe. As for me, sometimes touch feels bad to me. Sudden touch startles me. I really don't want to be touched by strangers. As Adam's primary caregiver, I have to keep myself from getting sick as well. So before you touch someone to lay hands on them, ask first.
4. Finally, be aware that what you perceive as a hardship or struggle, may not be as big of problem as you think to the person you are wanting to pray for.
Adam doesn't mind using a wheelchair. Walking isn't on his list of priorities. He is perfectly happy getting around in his wheelchair.
Adam doesn't want to get rid of his vent. His vent helps him feel his best. It helps him have the energy to do all of the things that he wants to do. Breathing is hard work for someone with Spinal Muscular Atrophy and using a ventilator gives him the energy to do other things.
Adam also feels that God has a purpose for his life and that he wants to wait patiently while God reveals his purpose for him. He also doesn't want others to lose faith in their prayers when God doesn't instantly make him walk. If and when God decides that Adam should walk, they Adam wants to build up people's faith, not decrease it because they wanted to rush things.
In summary, we love to have people pray for our family. Those prayers mean so much to us, but please consider our needs, not the needs you think we need. If you want to know specific things to pray for, please ask or reach out by email, personal message or text. We are happy to let you know what we need prayer for.
Blessings and love...
There have been times that people have offered to pray for us. I need those prayers. Our family needs those prayers. The one thing that makes both Adam and I very uncomfortable is when a strange walks up and asks to pray for us, or specifically Adam. I know their intention is good, and they think they are helping. There is only one problem. They don't know our situation. They don't know our specific needs. They take their view of the situation and pray for what they think is important.
One time, a lady came up to us and asked to pray for Adam. I asked Adam if it was okay. He said yes. She prayed that he would be healed and that he would walk. She then proceeded to tell Adam that if he believed and had faith that he would be healed and would walk. She knew nothing about our family or our faith. She didn't even know if it was important to Adam to be able to walk. She was praying for what SHE thought was important and didn't give one second of thought to what our needs were.
Early this year, we were waiting for my son to receive treatment for his condition at Northwestern Hospital in Chicago. He was supposed to have his procedure at 10:30 am and we had been there since 7:30 am since we had to arrive two hours early for lab work. We got a phone call from the staff at Northwestern saying that they had a critical situation that needed the room that they used for Adam's procedure. He would be delayed by at least two hours. I called my mom to let her know that we were delayed since she is hours away and worries. She said, "I will pray that you don't have to wait much longer." I yelled NO! They are trying to save someone's life in there and we can wait. We ended up having to wait 7 hours for Adam's procedure. The person they were working on had a stroke and they did the best they could to save his life. It was very likely that his family was sitting in the same waiting area with us while we waited for Adam's turn.
Recently, a lady sitting beside us at church asked if she could pray for Adam. I said, you can always pray for him. I was hoping to deflect her from praying out loud for him. She waited until the end of the service and again asked to pray for him. I told her that she could pray for protection from viruses like colds and flus that are so very dangerous to Adam. She was a little put off that I was telling her what to pray. Fortunately, her daughter intervened and told her not to be so pushy. She then asked his name and said that she was going to remember to pray for him. I thanked her. Its not that I don't appreciate her prayers, but again she is praying for what she wants, rather than what we truly need.
If you feel compelled to pray for someone that you don't know, please keep a few things in mind.
1. What does the person REALLY need prayer for? Ask them!
In our case, we need prayers for protection from illness, insurance to cooperate rather than fighting us over medical necessity, protection from financial hardship, and strength and endurance for David and I.
2. Consider that praying out loud may embarrass the other person.
Adam doesn't like to be the center of attention. Having someone pray out loud makes him very uncomfortable. He may not want you to point out his weaknesses to others nearby as well.
3. Check before laying hands on someone.
Adam and his pulmonologist have made a deal. Adam doesn't want to get a flu shot since he is greatly afraid of needles. He has to have a lot of blood work and getting Spinraza requires a very long needle into his spine. That is all the needles he can deal with. As a result, Adam has to promise his pulmonologist not to shake hands or touch other people when we are out during cold and flu season. The person you shook hands with 10 minutes ago, may have had a cold and just wiped their nose with the same hand you shook with. By touching Adam, you could potentially spread cold germs to him. Getting a cold can and has nearly turned fatal for Adam several times. We take precautions when touching Adam to keep him safe. As for me, sometimes touch feels bad to me. Sudden touch startles me. I really don't want to be touched by strangers. As Adam's primary caregiver, I have to keep myself from getting sick as well. So before you touch someone to lay hands on them, ask first.
4. Finally, be aware that what you perceive as a hardship or struggle, may not be as big of problem as you think to the person you are wanting to pray for.
Adam doesn't mind using a wheelchair. Walking isn't on his list of priorities. He is perfectly happy getting around in his wheelchair.
Adam doesn't want to get rid of his vent. His vent helps him feel his best. It helps him have the energy to do all of the things that he wants to do. Breathing is hard work for someone with Spinal Muscular Atrophy and using a ventilator gives him the energy to do other things.
Adam also feels that God has a purpose for his life and that he wants to wait patiently while God reveals his purpose for him. He also doesn't want others to lose faith in their prayers when God doesn't instantly make him walk. If and when God decides that Adam should walk, they Adam wants to build up people's faith, not decrease it because they wanted to rush things.
In summary, we love to have people pray for our family. Those prayers mean so much to us, but please consider our needs, not the needs you think we need. If you want to know specific things to pray for, please ask or reach out by email, personal message or text. We are happy to let you know what we need prayer for.
Blessings and love...
Sunday, October 8, 2017
The Prescription
My last post was back in May, May 8th to be exact. In 48 hours everything was going to change. On May 10th, I woke up with a bit of pain on my right side. Through the years this pain has randomly appeared. Most of the time, I just lie in bed for awhile until I feel better. I had talked to a couple of doctors and most of the time it was brushed off or attributed to any number of things.
This time was different. As you know, as the mother of a son with special needs, I just gotta keep going. I got up to get Adam ready for school. I mentioned to his nurse that I wasn't feeling well and had pain in my abdomen on the right side. I took Adam to school and sat in the van while he went to class. By the time his class was over 45 minutes later, my pain level was getting pretty bad. I still managed to drive us the majority of the way home before I knew this was not going to go away and I was not okay. Adam insisted that I go to the hospital. His nurse took over driving and off to the ER we went. I ended up collapsing at the hospital entrance. From that point on things are a bit sketchy. At some point, David and Adam were told that they were admitting me.
I ended up spending 24 hours in the hospital having all kinds of tests. Ultimately the diagnosis ended up being Crohn's disease. All of the problems that I had been having over the years now had a name. I really didn't know very much about Crohn's disease at the time. Adam had been researching it online and the person who has needed care all of his life was determined to take care of me! He learned as much as he could about the condition. Talking about a reversal of roles!
Crohn's disease is fairly serious. If it is not well controlled the complications can be very bad. I went home from the hospital with instructions to take a lot of medicine. I am not a big fan of medications and will usually refuse Tylenol. Suddenly, I am taking pills by the hands full. I am now down to 11 pills a day! Woot Woot!
One of the complications of Crohn's disease is debilitating fatigue. This hits me pretty hard, especially when a lot of the time, I have to just plow through and do what has to be done.
This weekend I got the chance to get away and join some of my special needs mama friends for a retreat in Rockford. The main rule of this retreat was you only had to do what you wanted to do. Nothing was required. The whole point was to have fun and relax.
I was kind of concerned going in to this retreat. Most of the services in our area are geared to special needs children. I was a bit worried that I was going to feel out of place since my son is 23 and no longer a child. I was delighted to see mamas of all ages. I knew from the first few minutes of this retreat that I was going to have the best time! First of all I was with some pretty awesome ladies. Kelly Whistler, Tina Krajewski, April Anderson, Terry Cortes and I are all friends online. We have gotten together several times to support each other and have fun. Tina, Terry and I all have children with Spinal Muscular Atrophy so we really understand each others struggles.
We all settled in for a fun weekend. The retreat opened with a key note speaker who had us cracking up. She had each of us introduce ourselves and tell what we loved. And we couldn't say our family. That was a given. I had to think pretty hard about what I wanted to say. This was a challenge because I have had laryngitis for the last two weeks and this late in the day, I couldn't talk more than a whisper. I finally settled on music and laughter as my things that I love. Both of these things can change my mood and turn a day around for me.
Next came the really fun part! A big part of this retreat is pampering. Massage therapy, reflexology, manicures and hair cuts were offered. Each person donated several spots that were going to be raffled off. The first raffle was for a 30 minute massage. Name after name was called and then Kimberly Sullivan! Woo Hooo! I won a massage. I was so excited. I had brought money to pay for a massage but I was going to get one for free! My friends each had the chance to win as well. In fact every single lady at the retreat got one of the services for free.
The evenings events were winding down. I was pretty run down and so I had to call it a night instead of staying up and chatting the night away. I really wished I could have hung out with my friends but I had nothing left in me. So off to bed I went.
My massage was scheduled for 9:40 so I got up to grab some breakfast and then off to enjoy my massage. It was glorious. All of the achy spots were massaged away and was relaxed. The rest of the day was filled with crafts, shopping, exercise sessions, relaxation techniques or just visiting and chatting. Whatever we wanted to do. During supper more raffles were held. Each person received two raffle prizes. We were really spoiled with gifts. The evening ended with a painting class. I love to paint and really enjoyed two hours of creativity. It was really fun painting with my friends. We talked and encouraged each other. In the end we each did an amazing job on our paintings. Each one was different, even though we started with the same concept.
Once again, fatigue had reared its ugly head and I had to cut my night short and call it a night. I was really bummed to miss out on the chance to chat with the girls. I am sure they all had a great time, but I needed my rest, so off to bed for some rest.
Sunday was the final hours of the retreat. We packed up our things and had breakfast before the closing session. I knew it was going to close with a White Elephant Gift Exchange. I had no idea that this was going to be the best part of the whole weekend. Everyone brought a gift some nice, some silly. Everything was wrapped and put in a pile in the center of the room. Names were pulled one by one and gifts were picked. As it would happen, I picked a silly gift and all of the women had a lot of fun laughing with me about the silly gift I had picked. I laughed so hard. I laughed so hard that my ribs were aching from the craziness.
At the beginning of the retreat I was asked what I loved, what made me happy. My answer was music and laughter. This weekend was filled with laughter. It started with laughter and ended with laughter. It was truly what I needed to nourish my soul. It was the one prescription for what I truly needed, laughter and fun.
This time was different. As you know, as the mother of a son with special needs, I just gotta keep going. I got up to get Adam ready for school. I mentioned to his nurse that I wasn't feeling well and had pain in my abdomen on the right side. I took Adam to school and sat in the van while he went to class. By the time his class was over 45 minutes later, my pain level was getting pretty bad. I still managed to drive us the majority of the way home before I knew this was not going to go away and I was not okay. Adam insisted that I go to the hospital. His nurse took over driving and off to the ER we went. I ended up collapsing at the hospital entrance. From that point on things are a bit sketchy. At some point, David and Adam were told that they were admitting me.
I ended up spending 24 hours in the hospital having all kinds of tests. Ultimately the diagnosis ended up being Crohn's disease. All of the problems that I had been having over the years now had a name. I really didn't know very much about Crohn's disease at the time. Adam had been researching it online and the person who has needed care all of his life was determined to take care of me! He learned as much as he could about the condition. Talking about a reversal of roles!
Crohn's disease is fairly serious. If it is not well controlled the complications can be very bad. I went home from the hospital with instructions to take a lot of medicine. I am not a big fan of medications and will usually refuse Tylenol. Suddenly, I am taking pills by the hands full. I am now down to 11 pills a day! Woot Woot!
One of the complications of Crohn's disease is debilitating fatigue. This hits me pretty hard, especially when a lot of the time, I have to just plow through and do what has to be done.
This weekend I got the chance to get away and join some of my special needs mama friends for a retreat in Rockford. The main rule of this retreat was you only had to do what you wanted to do. Nothing was required. The whole point was to have fun and relax.
I was kind of concerned going in to this retreat. Most of the services in our area are geared to special needs children. I was a bit worried that I was going to feel out of place since my son is 23 and no longer a child. I was delighted to see mamas of all ages. I knew from the first few minutes of this retreat that I was going to have the best time! First of all I was with some pretty awesome ladies. Kelly Whistler, Tina Krajewski, April Anderson, Terry Cortes and I are all friends online. We have gotten together several times to support each other and have fun. Tina, Terry and I all have children with Spinal Muscular Atrophy so we really understand each others struggles.
We all settled in for a fun weekend. The retreat opened with a key note speaker who had us cracking up. She had each of us introduce ourselves and tell what we loved. And we couldn't say our family. That was a given. I had to think pretty hard about what I wanted to say. This was a challenge because I have had laryngitis for the last two weeks and this late in the day, I couldn't talk more than a whisper. I finally settled on music and laughter as my things that I love. Both of these things can change my mood and turn a day around for me.
Next came the really fun part! A big part of this retreat is pampering. Massage therapy, reflexology, manicures and hair cuts were offered. Each person donated several spots that were going to be raffled off. The first raffle was for a 30 minute massage. Name after name was called and then Kimberly Sullivan! Woo Hooo! I won a massage. I was so excited. I had brought money to pay for a massage but I was going to get one for free! My friends each had the chance to win as well. In fact every single lady at the retreat got one of the services for free.
The evenings events were winding down. I was pretty run down and so I had to call it a night instead of staying up and chatting the night away. I really wished I could have hung out with my friends but I had nothing left in me. So off to bed I went.
My massage was scheduled for 9:40 so I got up to grab some breakfast and then off to enjoy my massage. It was glorious. All of the achy spots were massaged away and was relaxed. The rest of the day was filled with crafts, shopping, exercise sessions, relaxation techniques or just visiting and chatting. Whatever we wanted to do. During supper more raffles were held. Each person received two raffle prizes. We were really spoiled with gifts. The evening ended with a painting class. I love to paint and really enjoyed two hours of creativity. It was really fun painting with my friends. We talked and encouraged each other. In the end we each did an amazing job on our paintings. Each one was different, even though we started with the same concept.
Once again, fatigue had reared its ugly head and I had to cut my night short and call it a night. I was really bummed to miss out on the chance to chat with the girls. I am sure they all had a great time, but I needed my rest, so off to bed for some rest.
Sunday was the final hours of the retreat. We packed up our things and had breakfast before the closing session. I knew it was going to close with a White Elephant Gift Exchange. I had no idea that this was going to be the best part of the whole weekend. Everyone brought a gift some nice, some silly. Everything was wrapped and put in a pile in the center of the room. Names were pulled one by one and gifts were picked. As it would happen, I picked a silly gift and all of the women had a lot of fun laughing with me about the silly gift I had picked. I laughed so hard. I laughed so hard that my ribs were aching from the craziness.
At the beginning of the retreat I was asked what I loved, what made me happy. My answer was music and laughter. This weekend was filled with laughter. It started with laughter and ended with laughter. It was truly what I needed to nourish my soul. It was the one prescription for what I truly needed, laughter and fun.
Monday, May 8, 2017
Just One Minute
For years, I have done as much of my son Adam's care as humanly possible. He and I are a great team. I kind of instinctively know what he needs, and he needs that mom touch that no one else has. It is all well and good to be so in touch with each other., but at times, I just really need to not be in charge and to get a break. We have nurses that help during the day. We are very fortunate to have two great nurses that I feel comfortable with, I can confidently drop Adam off at school with either one of these nurses and know that all of his needs will be take care of. I also feel very comfortable running errands or taking a nap with Adam in their care. However, I still do the majority of his care.
I didn't really understand why I felt like I needed to be the one to do all of his care. Adam is really slow to develop the trust needed to allow others to care for him. It honestly takes him about a year to become comfortable with a nurse.
One day, I was chatting with one of our nurses. I was telling her a story about a time that Adam had been injured in the hospital. He had just had a major surgery where surgeons placed rods from his neck to his hips to correct the severe scoliosis that resulted from his Spinal Muscular Atrophy. He was not even 9 years old at the time. The surgery was done in Chicago, an hour from our home. I stayed with him throughout his 13 day hospital stay. I only left his side to eat and go to the bathroom. The one time the nurses had chased me off of the floor to get some sleep, he ended up getting too weak overnight and had to go back on the ventilator. One of the hospital respiratory therapist had spent the night in his room so that they wouldn't have to wake me up. I felt immense mom guilt for leaving him and going to get a few hours of sleep. I blamed myself for his set back. Surely, me sleeping had caused him to get worse.
That same hospital stay, We were finally on the road to recovery. Adam was finally being moved from the Pediatric Intensive Care Unit (PICU) to a regular room. Adam would need to be monitored for a couple more days to make sure he was truly ready to be released from the hospital. The nurses told us to gather our personal belongings while they transferred Adam down to the main floor. David and I grabbed all of our stuff and headed down to the Peds Unit. We took no more than maybe 5 minutes to gather our stuff and get back to Adam. After Adam had gotten down to his new room, he told the nurse that he had to go to the bathroom. An aide was sent in with a bedpan. She carelessly shoved the bedpan under him, ripping open the newly healed stitches from a major surgery.
I came back from being gone for just a couple minutes. In just that one minute, my whole faith in the ability of medical staff to safely care for my child in my absence had been destroyed.
It took me 15 years to finally understand why I felt like I had to be the one to do his care and why I absolutely can not leave my son in a hospital for a single night. Now, I know why it takes him forever to feel comfortable with a nurse. It really does only take one minute to make an impact on a person for the rest of their lives.
This post is dedicated to Cherry, John, Joyce, Debbie, Marla and George. The nurses who have come into our lives and made me feel comfortable enough that I could trust them to care for my son.
I didn't really understand why I felt like I needed to be the one to do all of his care. Adam is really slow to develop the trust needed to allow others to care for him. It honestly takes him about a year to become comfortable with a nurse.
One day, I was chatting with one of our nurses. I was telling her a story about a time that Adam had been injured in the hospital. He had just had a major surgery where surgeons placed rods from his neck to his hips to correct the severe scoliosis that resulted from his Spinal Muscular Atrophy. He was not even 9 years old at the time. The surgery was done in Chicago, an hour from our home. I stayed with him throughout his 13 day hospital stay. I only left his side to eat and go to the bathroom. The one time the nurses had chased me off of the floor to get some sleep, he ended up getting too weak overnight and had to go back on the ventilator. One of the hospital respiratory therapist had spent the night in his room so that they wouldn't have to wake me up. I felt immense mom guilt for leaving him and going to get a few hours of sleep. I blamed myself for his set back. Surely, me sleeping had caused him to get worse.
That same hospital stay, We were finally on the road to recovery. Adam was finally being moved from the Pediatric Intensive Care Unit (PICU) to a regular room. Adam would need to be monitored for a couple more days to make sure he was truly ready to be released from the hospital. The nurses told us to gather our personal belongings while they transferred Adam down to the main floor. David and I grabbed all of our stuff and headed down to the Peds Unit. We took no more than maybe 5 minutes to gather our stuff and get back to Adam. After Adam had gotten down to his new room, he told the nurse that he had to go to the bathroom. An aide was sent in with a bedpan. She carelessly shoved the bedpan under him, ripping open the newly healed stitches from a major surgery.
I came back from being gone for just a couple minutes. In just that one minute, my whole faith in the ability of medical staff to safely care for my child in my absence had been destroyed.
It took me 15 years to finally understand why I felt like I had to be the one to do his care and why I absolutely can not leave my son in a hospital for a single night. Now, I know why it takes him forever to feel comfortable with a nurse. It really does only take one minute to make an impact on a person for the rest of their lives.
This post is dedicated to Cherry, John, Joyce, Debbie, Marla and George. The nurses who have come into our lives and made me feel comfortable enough that I could trust them to care for my son.
Saturday, December 24, 2016
Merry Christmas Adam
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.
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, 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.
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