A friend (in real life) and fellow rare disease mom wrote a blog post yesterday titled "Faith to Not be Healed". You can read her blog entry here. It was such a timely blog post about her reaction to a clip she'd heard and her daughter's recent diagnosis. This week, I have been asking God why He has chosen to allow our family to deal with three rare diseases (Shwachman-Diamond Syndrome, Mitochondrial Disease and Eosinophilic Esophagitis) and asked Him why He would give my boys these diseases and also allow some of the treatments not to work for them. We found out Monday that my son's scope looks to be unchanged from his previous two. Meaning the new medication he started back in December isn't working.
So, reading Kathy's post really hit home today. Do we have the faith to not be healed? We know that God doesn't heal everyone. Even when Jesus walked this earth, He did not heal everyone, so why would we expect everyone to be healed now? So often over the years, people have said to us, "If you have faith, they will be healed," and we even had one lady say, "You don't need to bring them to the doctor, it is God's will that they be healed." It's amazing what people say.
How do we react when it just isn't God's will that we or our children are healed? I believe God uses healing just as much as He uses suffering in the absence of His healing. Do we see God suffering? This week being Holy Week, I have been meditating on the Lord's Passion. A lot.
We've been dealing with rare, chronic illnesses for almost twenty years. While we pray for healing daily, we are confronted with reality when tests reveal that healing hasn't taken place. Or has it? I think healing comes in many forms. Maybe God has chosen to heal us spiritually instead of healing our children (or us) physically. I think over the course of twenty years, God HAS healed us spiritually. His grace gets us through the rough times and the crazy illnesses that pop up due to the rare diseases my children battle daily. God uses our suffering to encourage others. Paul says the following:
2 Cor 1:5-7- "For as Christ's sufferings overflow to us, so through Christ does our encouragement also overflow. If we are afflicted, it is for your encouragement and salvation; if we are encouraged, it is for your encouragement, which enables you to endure the same sufferings that we suffer. Our hope for you is firm, for we know that as you share in the sufferings, you also share in the encouragement."
Sometimes, I can easily accept God's will. Other times, I am tired, cranky and fight acceptance. I'm human! Prayer helps, but I can't say that I always accept His will, if I am being honest with myself. I understand redemptive suffering and scripture is replete with examples of suffering with Christ and accepting our sufferings patiently. 1 Peter 4:13 reminds us, "But rejoice to the extent that you share in the sufferings of Christ; so that when his glory is revealed you may also rejoice exultantly."
It's just not always easy to rejoice in our sufferings, is it? My middle son was hospitalized the week before Christmas last year because his uvula was nicked during a routine upper GI scope and it became infected. Who has ever heard of an infected uvula? I'm here to tell you that it happens. It was difficult to say, "Wow, Jesus, I'm sure glad you allowed this odd infection to set in after we've already spent the week at the hospital, I'm going to rejoice in this." It doesn't come naturally for anyone. Many a saint has worked a lifetime to gain acceptance of his suffering. While I hope to one day be counted among the saints in heaven, I've got a long way to go.
God also gives us the grace to laugh at some of these odd trials we manage to overcome with His help. In my opinion, laughter IS grace.
Name the appendage and my people have had an infection on it. I could do a stand up comedy routine just on the unusual and rare infections. If I had a penny for every time I'd heard, "We've never seen anything like this." Sometimes, people who haven't faced the medical trials that we have faced look in horror because we are laughing. We can laugh or cry. We choose to laugh. With the help of God's grace, of course. Sometimes we can't even begin to laugh until we cried.
It's Holy Thursday and I'm doing what I've done many a Holy Week in the past.....waiting on the final biopsy reports and test results. Slowly, we are accepting that the scope on Monday doesn't look any better than the previous scopes in December and October. It's difficult to accept that medications don't knock the disease out. The biopsy results will tells us if the medications are working AT ALL. We pray for healing, we pray for a cure and we keep working at accepting God's will in all of this. We pray for the grace to patiently accept the suffering we encountered for the grace to be able to unite our sufferings to His.
Tomorrow is Good Friday and I am always reminded that every Good Friday brings an Easter Sunday, a Resurrection Sunday. This week, as I have pondered Christ's passion, I've also been reminded of what Paul says in 1 Colossians 1:24, "Now I rejoice in my sufferings for your sake, and in my flesh I am filling up what is lacking in the afflictions of Christ on behalf of His body, which is the church."
Somewhere in all of this, we find the faith to not be healed. God is good.
Showing posts with label chronic illness. Show all posts
Showing posts with label chronic illness. Show all posts
Thursday, March 24, 2016
Saturday, January 31, 2015
Looking on the Bright Side of Chronic Illness
I wrote this back in January of 2009
Looking on the Bright Side
As parents of children with chronic health care needs, we are taxed with keeping our emotions in check and not allowing our anxiety to show. Our children depend on us to teach them how to cope with their illness. If we lose it, they will lose it. If we do not cope, they will not learn how to cope. This can be quite difficult in the face of constant stress and new medical challenges. One way that I have learned to manage is by counting our blessings.
One of my children with Shwachman-Diamond Syndrome also has a plethora of other medical challenges. Among other things, he has had neurosurgery for release of tethered spinal cord and dealt with a neurogenic bladder for as long as he can remember. As we stood in an exam room long ago, I had to remind myself, "Pattie, if you don't lose it, he won't lose it. If you lose it, he will lose it. If you don't cope, he won't cope." At that moment, I immediately began to count my blessings and tried to see the blessings in his having to begin intermittent catheterization (IC). It was very hard for me to contain my emotions when the doctor explained our options that day. I knew that everything I was feeling was magnified for Joseph. I knew I had to keep my cool so that I could help him cope. It was difficult to find positives in IC, no doubt, but I knew if we wanted to make it through that first day, we would need to focus on the blessings to get us through. As our friend Angela Brown used to say, "Positive thoughts equals positive results." The first step in being positive is to count your blessings.
I admit that I am not always that great about counting my blessings, especially during periods of extreme stress. Before we began our training session, Joseph and I knelt down and prayed. My heart almost broke when he told me, "I don't think Jesus is with me. If He was with me, none of this would be happening." We later talked about how Jesus Himself cried out from the cross for His Father. I told Joseph that He did that so that we would know that He understood how we felt. We also talked about the positive side of IC while we were waiting for the nurse to come in to train us. We counted our blessings.
It has been life-changing to do intermittent catheterization every four hours during the day. I would be lying if I said I can always see the blessings in IC. The first week of IC was painful beyond measure. When he was upset one night during this first week, I began to talk to him about how we could look at the positives. This new treatment would be hard, but he would be dry and hopefully not have accidents. He would be able to go and play and not have to worry about accidents. He would not have to worry about whether or not his friends might notice. He could come in for IC and go right back out to play. I explained that while he had to restart medication he disliked, we would be doing it on a different schedule so that the side effects might be lessened. These were all things we could check off on the "positive" column. IC would also be protecting his kidneys from damage due to his high pressure, neurogenic bladder.
As he laid there in bed, he cried a bit when he realized that IC might be forever. Joseph said that he wanted to be a normal kid. I told him that I never wanted to minimize his problems or make him think that having health problems or having to catheterize was not a big deal or something worthy of being upset over. After I said that, I added, But, you know, we really need to count our blessings. There are so many children out there who have it much worse. While catheterization isn't fun, you will still be able to go outside and play, you can still ride your bike, play baseball, swim and so many other things. You'll have to catheterize every four hours, but you will still be able to do all of the things you were able to do before."
That night, we also discussed difficult topics. I told Joseph that even kids he feels are "normal" wish they were normal. It can be a normal part of childhood to feel as if you do not fit in, that you are somehow different than others--so what he was feeling was, in fact, NORMAL. We also talked about how everyone has strengths and weaknesses; everyone has struggles and suffering. These topics are not easy to bring up with a child, but they are important concepts for a child to learn. As parents, it is our job to help each of our children build upon their strengths and overcome their weaknesses, chronic illness or not. My one healthy son struggled for many years with reading comprehension problems while my SDS boys never dealt with learning disabilities. We all have problems to overcome, it is only a matter of degree. Counting your blessings is a conscious choice to look at the positive things in your life. While you do have to pay attention to the medical details, you do have a choice about how it affects your outlook.
Feeling better after our long talk, we said our prayers and he fell fast asleep. A few days later, as we were walking into the grocery store, Joseph announced, "Cathing isn't going to be so bad." His dad looked at him and said, "Well, that's a positive attitude to have." Joseph then said, "Well, I learned to look on the bright side from mom." That spoke volumes to me. As a mother, I really do influence how my children cope with adversity. If I am negative, then they will be negative. If I am positive and count my blessings, then they will learn to do the same.
Intermittent catheterization is our latest hurdle to overcome, but we have used the "technique" of counting our blessings to cope with the many other medical issues we have faced in dealing with Shwachman-Diamond Syndrome and Mitochondrial Disease for many years now.
Joseph's Point of View: Looking on the Brighter Side
By Joseph Curran
My mom asked me if it was okay to print the article she wrote about counting blessings and looking on the bright side and I said okay. I told her that I would write something about looking on the bright side of things, too.
I am eleven and I have Shwachman-Diamond Syndrome and I have to do something called intermittent catheterization (IC). Life hasn't always ben easy, but I try to look on the bright side. I learned to look on the bright side because my mom taught me to. I was upset by IC until I looked on the bright side.
Since I was little I have had a lot of medical procedures and surgeries. I started looking on the bright side of things and got through the procedures and surgeries better. I learned that even when I am sad Jesus is with me, even when I think He is not. I learned to cunt my blessings and look on the bright side and that there is always something to be thankful for. Looking for good things when life is hard makes me feel happier.
Looking on the Bright Side
As parents of children with chronic health care needs, we are taxed with keeping our emotions in check and not allowing our anxiety to show. Our children depend on us to teach them how to cope with their illness. If we lose it, they will lose it. If we do not cope, they will not learn how to cope. This can be quite difficult in the face of constant stress and new medical challenges. One way that I have learned to manage is by counting our blessings. One of my children with Shwachman-Diamond Syndrome also has a plethora of other medical challenges. Among other things, he has had neurosurgery for release of tethered spinal cord and dealt with a neurogenic bladder for as long as he can remember. As we stood in an exam room long ago, I had to remind myself, "Pattie, if you don't lose it, he won't lose it. If you lose it, he will lose it. If you don't cope, he won't cope." At that moment, I immediately began to count my blessings and tried to see the blessings in his having to begin intermittent catheterization (IC). It was very hard for me to contain my emotions when the doctor explained our options that day. I knew that everything I was feeling was magnified for Joseph. I knew I had to keep my cool so that I could help him cope. It was difficult to find positives in IC, no doubt, but I knew if we wanted to make it through that first day, we would need to focus on the blessings to get us through. As our friend Angela Brown used to say, "Positive thoughts equals positive results." The first step in being positive is to count your blessings.
I admit that I am not always that great about counting my blessings, especially during periods of extreme stress. Before we began our training session, Joseph and I knelt down and prayed. My heart almost broke when he told me, "I don't think Jesus is with me. If He was with me, none of this would be happening." We later talked about how Jesus Himself cried out from the cross for His Father. I told Joseph that He did that so that we would know that He understood how we felt. We also talked about the positive side of IC while we were waiting for the nurse to come in to train us. We counted our blessings.
It has been life-changing to do intermittent catheterization every four hours during the day. I would be lying if I said I can always see the blessings in IC. The first week of IC was painful beyond measure. When he was upset one night during this first week, I began to talk to him about how we could look at the positives. This new treatment would be hard, but he would be dry and hopefully not have accidents. He would be able to go and play and not have to worry about accidents. He would not have to worry about whether or not his friends might notice. He could come in for IC and go right back out to play. I explained that while he had to restart medication he disliked, we would be doing it on a different schedule so that the side effects might be lessened. These were all things we could check off on the "positive" column. IC would also be protecting his kidneys from damage due to his high pressure, neurogenic bladder.As he laid there in bed, he cried a bit when he realized that IC might be forever. Joseph said that he wanted to be a normal kid. I told him that I never wanted to minimize his problems or make him think that having health problems or having to catheterize was not a big deal or something worthy of being upset over. After I said that, I added, But, you know, we really need to count our blessings. There are so many children out there who have it much worse. While catheterization isn't fun, you will still be able to go outside and play, you can still ride your bike, play baseball, swim and so many other things. You'll have to catheterize every four hours, but you will still be able to do all of the things you were able to do before."
That night, we also discussed difficult topics. I told Joseph that even kids he feels are "normal" wish they were normal. It can be a normal part of childhood to feel as if you do not fit in, that you are somehow different than others--so what he was feeling was, in fact, NORMAL. We also talked about how everyone has strengths and weaknesses; everyone has struggles and suffering. These topics are not easy to bring up with a child, but they are important concepts for a child to learn. As parents, it is our job to help each of our children build upon their strengths and overcome their weaknesses, chronic illness or not. My one healthy son struggled for many years with reading comprehension problems while my SDS boys never dealt with learning disabilities. We all have problems to overcome, it is only a matter of degree. Counting your blessings is a conscious choice to look at the positive things in your life. While you do have to pay attention to the medical details, you do have a choice about how it affects your outlook.
Feeling better after our long talk, we said our prayers and he fell fast asleep. A few days later, as we were walking into the grocery store, Joseph announced, "Cathing isn't going to be so bad." His dad looked at him and said, "Well, that's a positive attitude to have." Joseph then said, "Well, I learned to look on the bright side from mom." That spoke volumes to me. As a mother, I really do influence how my children cope with adversity. If I am negative, then they will be negative. If I am positive and count my blessings, then they will learn to do the same.
Intermittent catheterization is our latest hurdle to overcome, but we have used the "technique" of counting our blessings to cope with the many other medical issues we have faced in dealing with Shwachman-Diamond Syndrome and Mitochondrial Disease for many years now.
Joseph's Point of View: Looking on the Brighter Side
By Joseph Curran
I am eleven and I have Shwachman-Diamond Syndrome and I have to do something called intermittent catheterization (IC). Life hasn't always ben easy, but I try to look on the bright side. I learned to look on the bright side because my mom taught me to. I was upset by IC until I looked on the bright side.
Since I was little I have had a lot of medical procedures and surgeries. I started looking on the bright side of things and got through the procedures and surgeries better. I learned that even when I am sad Jesus is with me, even when I think He is not. I learned to cunt my blessings and look on the bright side and that there is always something to be thankful for. Looking for good things when life is hard makes me feel happier.
Tuesday, October 22, 2013
Pray for Couples with Chronically Ill Kids
Please
offer a prayer for married couples with chronically ill kids. Pray that
they find God's grace and draw strength from the sacrament of marriage
to face the daily challenges of raising special needs kids. Pray that
God gives them peace and comfort through the sacrament of marriage and
the courage to work on the problems they face together with God at the
center.
It is SO hard to work on a marriage when life seems to revolve around one medical challenge, surgery or illness after another. Often times, we keep our heads down dealing with the medical crisis at hand and forget to think about our marriage. Sometimes, we forget to place God at the center.
On my Catholic Tea Party Hippie blog, I just wrote about a family who lost their health insurance because of Obamacare. I cannot imagine it, though the reality scares me. I'm offering an extra prayer for those folks today- we know there are thousands of people losing their insurance, many with chronically ill kids. Pray for their situation to improve, but also pray for their marriages. The stress can be unbearable.
It is SO hard to work on a marriage when life seems to revolve around one medical challenge, surgery or illness after another. Often times, we keep our heads down dealing with the medical crisis at hand and forget to think about our marriage. Sometimes, we forget to place God at the center.
On my Catholic Tea Party Hippie blog, I just wrote about a family who lost their health insurance because of Obamacare. I cannot imagine it, though the reality scares me. I'm offering an extra prayer for those folks today- we know there are thousands of people losing their insurance, many with chronically ill kids. Pray for their situation to improve, but also pray for their marriages. The stress can be unbearable.
Monday, February 6, 2012
Puke, Pokies and Pigs
Sometimes, life revolves around bodily fluids. I hate to admit how much this is true in our lives. J had a bad stomach ache last night, couldn't describe the pain, so I sent him to bed. He and S have bad stomach aches a lot. It's been life since they were born, so we really think nothing of it. He woke up throwing up just after midnight. From the top bunk. His older brother narrowly escaped from bottom bunk, he got out of the way in a flash. I've never seen S get out of bed that quickly before. It's been a long day. He threw up 30 plus times and had a slight fever by morning. This afternoon it is almost 103 and seeming to climb. The one pokie went well.
The Mito cocktail is not pleasant going in and it is worse coming out....and it turns everything bright orange. The dead fish pills (L-carnitine - we call them dead fish pills because they smell like dead fish) and the riboflavin--- I cannot even begin to tell you. Mito moms will know what I am talking about. He was throwing up until 3 am and we were also cleaning carpet. Love the Little Green Machine. He woke up again a few times between 3 and 6 and has been okay since then. Except for the high fever that started this afternoon.
I've scrubbed with bleach and Lysol. Went over it again with antibacterial cleaner..... I'm a bit on the OCD side when it comes to vomiting viruses. They scare me.
In other news, our pigs arrived, but we didn't show them to J. Figured a pukey day wasn't the right day to do that! I'm excited about dissecting the pigs with the boys. We bought these from Carolina Biological. They are not raised for dissection-- they preserve pigs who were stillborn who would be thrown out in the trash.
The Mito cocktail is not pleasant going in and it is worse coming out....and it turns everything bright orange. The dead fish pills (L-carnitine - we call them dead fish pills because they smell like dead fish) and the riboflavin--- I cannot even begin to tell you. Mito moms will know what I am talking about. He was throwing up until 3 am and we were also cleaning carpet. Love the Little Green Machine. He woke up again a few times between 3 and 6 and has been okay since then. Except for the high fever that started this afternoon.
I've scrubbed with bleach and Lysol. Went over it again with antibacterial cleaner..... I'm a bit on the OCD side when it comes to vomiting viruses. They scare me.
In other news, our pigs arrived, but we didn't show them to J. Figured a pukey day wasn't the right day to do that! I'm excited about dissecting the pigs with the boys. We bought these from Carolina Biological. They are not raised for dissection-- they preserve pigs who were stillborn who would be thrown out in the trash.
Wednesday, August 17, 2011
The Good, the Bad and the Ugly
The good thing is that we didn't end up with any infections while we were on our first real vacation in years. I feel like the world is getting even with us. I suppose things happen for a reason. I think I had a breakdown of sorts (it happens in my world) and ended up talking to my pastor, my doctor and another priest all in one week. This life isn't always easy to cope with. Many times it seems surreal to me. I don't know how other people cope with having two chronically ill kids. Maybe it was God's way of making me slow down and seek advice. The stress with sick kids never goes away.
Joseph's anxiety and meltdowns affect our entire family. His OCD spikes before any of his procedures and it can make life really quite miserable. It hurts to say it, but it is an ugly truth of living a life with chronically ill kids. We don't live in that elusive land called perfect. Anticipating the stress overload may be just as bad as making it through the stressful hospital days.
For the last three weeks, Joseph has been battling an infection on his toe and we've managed to avoid being admitted for IV antibiotics. Two different antibiotics failed, then we spent time in the hem/onc clinic getting x-rays to be sure it didn't spread to the bone and getting it cultured. The infection spread on the first two antibiotics. Started a new antibiotic Friday and it continued to get worse on Saturday. Our doctor in Cincy asked for the 24 hr culture report, which I forwarded right before we started driving, not thinking he would do anything until our appointment on Monday. Sunday was interesting! I checked my email on the road and had an email to call the doctor on his cell phone. He called in a script and I picked it up in Charleston, WV. He wanted me to pick it up and not wait until we got to Cincy. It is still infected today, but looking much better.
As hospital days go, yesterday was one of our worst ever. The only prayer I could pray was the name of Jesus. Being in the hospital is very surreal. The boys were in rooms that were far apart, I mean, who does that!? Oh, here is a mom with two boys having bone marrow biopsies, let's put them in rooms that are far apart and watch mom run. One nurse even laughed. Joseph went into the OR first. After an hour, I knew something was wrong. The first doctor messed up the biopsy site and they had to call in a second doctor to do a second biopsy. He is extra sore today. Sean is thankfully, doing okay today.
The stress hangovers are hard to deal with. Hard to explain, but anyone with chronically ill kids knows what I am talking about. It is a balancing act, really. Waiting for results and trying to forget the horrid days at the hospital. It is difficult trying to tuck it all away, pretending it doesn't exist and going about daily life as if everything is normal. Showing up at piano, football practice and even Mass is hard. It is difficult to conceal a heart that has been overloaded with stress and anxiety. Somehow, we (hopefully) manage to appear as a normal American family.
My mood today: on the outside everything appears to be normal..... On the inside, it all just sucks.
Joseph's anxiety and meltdowns affect our entire family. His OCD spikes before any of his procedures and it can make life really quite miserable. It hurts to say it, but it is an ugly truth of living a life with chronically ill kids. We don't live in that elusive land called perfect. Anticipating the stress overload may be just as bad as making it through the stressful hospital days.
For the last three weeks, Joseph has been battling an infection on his toe and we've managed to avoid being admitted for IV antibiotics. Two different antibiotics failed, then we spent time in the hem/onc clinic getting x-rays to be sure it didn't spread to the bone and getting it cultured. The infection spread on the first two antibiotics. Started a new antibiotic Friday and it continued to get worse on Saturday. Our doctor in Cincy asked for the 24 hr culture report, which I forwarded right before we started driving, not thinking he would do anything until our appointment on Monday. Sunday was interesting! I checked my email on the road and had an email to call the doctor on his cell phone. He called in a script and I picked it up in Charleston, WV. He wanted me to pick it up and not wait until we got to Cincy. It is still infected today, but looking much better.
As hospital days go, yesterday was one of our worst ever. The only prayer I could pray was the name of Jesus. Being in the hospital is very surreal. The boys were in rooms that were far apart, I mean, who does that!? Oh, here is a mom with two boys having bone marrow biopsies, let's put them in rooms that are far apart and watch mom run. One nurse even laughed. Joseph went into the OR first. After an hour, I knew something was wrong. The first doctor messed up the biopsy site and they had to call in a second doctor to do a second biopsy. He is extra sore today. Sean is thankfully, doing okay today.
The stress hangovers are hard to deal with. Hard to explain, but anyone with chronically ill kids knows what I am talking about. It is a balancing act, really. Waiting for results and trying to forget the horrid days at the hospital. It is difficult trying to tuck it all away, pretending it doesn't exist and going about daily life as if everything is normal. Showing up at piano, football practice and even Mass is hard. It is difficult to conceal a heart that has been overloaded with stress and anxiety. Somehow, we (hopefully) manage to appear as a normal American family.
My mood today: on the outside everything appears to be normal..... On the inside, it all just sucks.