Covid-19 and how it effects special needs

Any stories of how it's effected you?

My story
My small family consist of my wife and son. My son has a metabolic disorder called Propionic Acidemia. He was born with it and it basically does not allow his body to process certain amino acids in protein. There is no cure and the only treatment is a handful of meds and diet restrictions. Complicated diet that has to be tweaked to give him enough protein to grow and calories to give him energy to play and be normal. He does not eat anything by mouth and is completely G-tube fed which has turned out to be the norm for most kids like him.

He was born healthy and passed all the test at the hospital. A couple weeks later he was starting to slide and we noticed but doctors were convinced we were be over worried first time parents. At 5 weeks old he started having seizures. They were very mild and not obvious but I assumed the worst. Doctors again told us that we were being over worried first time parents. We took him to Kosair anyway and he had 7 that day.

We spent weeks in the hospital. Multiple suspected diagnose and ICU. We thought we would lose him so many times while we were there. I prayed like I have never prayed in my life. I cried like I have never cried in my life. He never got back to 100% that first hospital stay but was stable and we eventually were told to take him home and enjoy him.
Which was heartbreaking to hear and we did.

A few days later we received a call and were told that it was confirmed he had Propionic Acidemia from a muscle biopsy sent to a lab in California. We were relieved but had no idea what the hell was next. What was next was a learning curve of a roller coaster ride for the last 17 years.

We became lab scientist, doctors, super mom and super dad. We became caregivers and still managed to work full time jobs with 12hr overtime days. We would get depressed and worry then become happy and enjoy the little things. We had to learn to balance regular people life with dealing with a kid with a weakened immune system. A immune system that any normal virus could take his life. We battled Flu's, Stomach bugs, colds, Streph, Swine flu and a number of other not so normal fungus and bacteria over the last 17 years. He went to school for 2 years. First year he made it 15 days total all year with hospital stays in between. The second year we thought maybe his immune system will catch up and he made it until almost thanksgiving. We spend almost 20 days in the hospital with the stomach flu that year and we knew it was in the school before he got it. So we decided to home school.

Fast forward through 17 years and what we have learned. We could have invented the term social distancing. We always weighed the risk compared to reward for anything he got to do. We are avid hand washers. We don't always get to do birthdays or holidays on time and when we do they are small gatherings. We don't always get to do funerals and when I decided that it was a big deal for our family that didn't understand. But funerals are breeding grounds because everyone is hugging and crying and just touching each other. We work cautiously, clean our work area and always mindful of not touching our face, nose or mouth. Try not to have lunch when everyone else will be in the break rooms. Don't share foods and rarely participate in free for all food gatherings at work. We tried to be very open about what we were dealing with so that our coworkers could let us know when they were sick and had to come to work so we would stay away from them. During Flu season we quarantined ourselves upstairs anytime we felt just a runny nose or cough. We actually bought a house with an upstairs entrance just so we would do this. We stopped going to ballgames, movies, out to eat or any mass gatherings during the winter. There are many other things I am sure I have left off here but you get the point.

Now comes Covid-19. There is no doubt that if he gets this he will probably no longer be with us. If my wife and I get it we won't be able to take care of him. I hope those of you that think this is not real, a hoax, only effects those with underlying disease or older adults that have made bad health decisions their whole life and on their last leg read my story and at least put yourself in my shoes. Please think about people like me with this story. I have fought like hell to give this kid the best life I can under conditions most of you would have never had to deal with. Now you know.

Please be safe and know that life is still pretty **** good without going to the movies and ballgames. There will be a time you will be able to do those things again. Just remember you are doing it for people like me and my son. I would also like for you all to join the Mask4All movement. I wear a mask to protect you and you wear it to protect me.

Thanks and God Bless,
Dave

I would like to add that an unexpected thing has come out of this crisis. My wife told me Sunday that she actually enjoys getting to go to church now since it's online. Before it was a risk for us to attend. God is amazing.

[QUOTE=gocards40;577489]Any stories of how it's effected you?

My story
My small family consist of my wife and son. My son has a metabolic disorder called Propionic Acidemia. He was born with it and it basically does not allow his body to process certain amino acids in protein. There is no cure and the only treatment is a handful of meds and diet restrictions. Complicated diet that has to be tweaked to give him enough protein to grow and calories to give him energy to play and be normal. He does not eat anything by mouth and is completely G-tube fed which has turned out to be the norm for most kids like him.

He was born healthy and passed all the test at the hospital. A couple weeks later he was starting to slide and we noticed but doctors were convinced we were be over worried first time parents. At 5 weeks old he started having seizures. They were very mild and not obvious but I assumed the worst. Doctors again told us that we were being over worried first time parents. We took him to Kosair anyway and he had 7 that day.

We spent weeks in the hospital. Multiple suspected diagnose and ICU. We thought we would lose him so many times while we were there. I prayed like I have never prayed in my life. I cried like I have never cried in my life. He never got back to 100% that first hospital stay but was stable and we eventually were told to take him home and enjoy him.
Which was heartbreaking to hear and we did.

A few days later we received a call and were told that it was confirmed he had Propionic Acidemia from a muscle biopsy sent to a lab in California. We were relieved but had no idea what the hell was next. What was next was a learning curve of a roller coaster ride for the last 17 years.

We became lab scientist, doctors, super mom and super dad. We became caregivers and still managed to work full time jobs with 12hr overtime days. We would get depressed and worry then become happy and enjoy the little things. We had to learn to balance regular people life with dealing with a kid with a weakened immune system. A immune system that any normal virus could take his life. We battled Flu's, Stomach bugs, colds, Streph, Swine flu and a number of other not so normal fungus and bacteria over the last 17 years. He went to school for 2 years. First year he made it 15 days total all year with hospital stays in between. The second year we thought maybe his immune system will catch up and he made it until almost thanksgiving. We spend almost 20 days in the hospital with the stomach flu that year and we knew it was in the school before he got it. So we decided to home school.

Fast forward through 17 years and what we have learned. We could have invented the term social distancing. We always weighed the risk compared to reward for anything he got to do. We are avid hand washers. We don't always get to do birthdays or holidays on time and when we do they are small gatherings. We don't always get to do funerals and when I decided that it was a big deal for our family that didn't understand. But funerals are breeding grounds because everyone is hugging and crying and just touching each other. We work cautiously, clean our work area and always mindful of not touching our face, nose or mouth. Try not to have lunch when everyone else will be in the break rooms. Don't share foods and rarely participate in free for all food gatherings at work. We tried to be very open about what we were dealing with so that our coworkers could let us know when they were sick and had to come to work so we would stay away from them. During Flu season we quarantined ourselves upstairs anytime we felt just a runny nose or cough. We actually bought a house with an upstairs entrance just so we would do this. We stopped going to ballgames, movies, out to eat or any mass gatherings during the winter. There are many other things I am sure I have left off here but you get the point.

Now comes Covid-19. There is no doubt that if he gets this he will probably no longer be with us. If my wife and I get it we won't be able to take care of him. I hope those of you that think this is not real, a hoax, only effects those with underlying disease or older adults that have made bad health decisions their whole life and on their last leg read my story and at least put yourself in my shoes. Please think about people like me with this story. I have fought like hell to give this kid the best life I can under conditions most of you would have never had to deal with. Now you know.

Please be safe and know that life is still pretty **** good without going to the movies and ballgames. There will be a time you will be able to do those things again. Just remember you are doing it for people like me and my son. I would also like for you all to join the Mask4All movement. I wear a mask to protect you and you wear it to protect me.

Thanks and God Bless,
Dave[/QUOTE]
Wow with 3 kids myself I couldn't imagine the struggles you've had. You and your wife are truly super parent's. Take care and God bless. Chuck

The Voluntary Sacrifice Of Praise

We now live in a very different world than we knew just a short time ago. We will always have days of sickness, but this time in our history, sickness has been elevated to a new level. During times of sickness, we look for hope, but we should pray for healing. Should we not ask the Lord for strength and healing in times of stress? In Psalm 50:15 it says, “Call upon Me in the day of trouble: I will deliver thee, and thou shalt glorify Me.” Its God’s desire to strengthen and heal us in our days of weakness.

I am sure everyone has asked why does God allow any suffering? Suffering can overwhelm our belief, faith and lives. Suffering started when God gave Adam and Eve “freedom of choice” in the Garden of Eden. God did not prevent Adam and Eve from making the wrong choice. Freedom of choice allows us to either make well thought out and prayerful decisions or make poorly conceived or even evil and sinful decisions. Each day world and national leaders make decisions and choices affecting people, which have the potential to cause great suffering. Sometimes it is the lack of decision making that causes suffering. God wants us to evaluate and pray for guidance in our decision making in order to avoid harmful consequences.

As Christians, we should be able to choose between right and wrong, wisdom and foolishness, carelessness and vigilance. The freedom of choice allows us to learn the importance of righteous behavior and of following God’s teachings in our lives. If we follow God’s blueprint for our lives, we can prevent and/or avoid bad decisions. God rarely interferes in our decision making unless we ask for His guidance.

God does answer prayer, and he does intervene for his people when we ask, and it is His will to do so. “Ask, and it shall be given to you” (Matthew 7:7). “And all things whatsoever you shall ask in prayer, believing, you shall receive” (Matthew 21:22). God will protect His people. “Worship the Lord your God, and He will bless your bread and your water. I will take away sickness. No woman will miscarry or be barren in your land. I will give you full life span. I will cause the people ahead of you to feel terror and throw into confusion all nations you encounter. I will make all your enemies to turn their backs to you in retreat.” (Exodus 23:25-27). In Deuteronomy 30:19, God gives us the choice between life and death, blessings and curses. Why would God give us a choice if we were unable to make one?

However, I must be honest here. It is still very difficult for me to accept suffering of any kind, whether it be human or animal. I personally had hard questions concerning why God allows unthinkable suffering, crimes, accidents and events to occur to the innocent, causing unimaginable suffering. It is easy for victims of personal loss, crime, genocide, patrimonalism, terrorism, health and greed to feel lost, abandoned and faithless. During times of great suffering, it is tempting to lose all faith in God when terrible tragedies occur. One day when I stand before the Lord, I am sure my questions will be answered, but for now I must trust in the One who gave me life.

You have to remember Job’s wife also suffered because she saw all the terrible things Satan did to Job. She loved Job, and it was hard to see him suffer as he did. In her frustration, she said to Job, “Are you still holding on to your integrity? Curse God and die!” And Job replied, “You are talking like a foolish women. Shall we accept good from God, and not trouble?” (Job 2:9-10). We may not curse God, but we sure want to give up and lose faith in a loving God. No passing pain can compare to God’s goodness. When tragedies occur, Satan is at his best, and it is then he will seek to destroy our faith and trust in God. Despair and depression are Satan’s tools to enter our souls. Our responsibility to God should not be extracted in view of our suffering. Our tolerance to suffering must be viewed in light of the Crucifixion.

When Leah, the wife of Jacob, felt alone and unloved, she prayed and trusted in God. God did hear and answered Leah’s prayers, and she always gave credit to God and His providence. It was her voluntary sacrifice of praise in her agony that made the difference to God. It is in our time of defeat when we may feel there is no hope, we can have victory and peace through God’s scriptural promises and His love.

Roy L. Nave
2019

[QUOTE=riverrat12;577494]Wow with 3 kids myself I couldn't imagine the struggles you've had. You and your wife are truly super parent's. Take care and God bless. Chuck[/QUOTE]

Thanks Chuck.
Super parents that have made a ton of mistakes. I know I am an odd duck here because of my life experience. But I see this Covid-19 experience so similar with ours. The difference is we had years to correct our mistakes and adjust. For us it's become a way of life and it's still good. For the rest of the world having just a few weeks to adjust is crazy. I get it. I really just want everyone I can touch to know that life still goes on and it's still good. I hope that makes sense because I totally feel like I'm rambling.

Dave