Every so often we get through the day without feeling tired. Let me rephrase that...Every so often we get through the day without feeling exhausted. Even that attempt at expressing the feeling falls short.
It's not a matter of sleep. We wish it were. That would be an easy fix. If SMA was keeping us up at night with frequent sleep interruptions we could hire a night-nurse to take the overnight shift. That's not the case, however. Ella is waking up only twice, maybe three times a night. She needs to be turned in her sleep and her feeding tube needs to be shut off and flushed. All of those things take no more than a minute...no need to hire someone for that...we do them and go right back to sleep; just as if one were visiting the bathroom during the night.
No, it's not a matter of sleep or even the quality of sleep. We both find deep sleep through the night; we dream, toss and turn, and have a hard time waking from our slumber just as anyone else does. No, the quality of sleep is sufficient as is the quantity.
What is causing us to be so utterly tired then?
Stress.
Worry.
The lifestyle we now live.
Caring for Ella is physically demanding. No other way to put it. It's demanding of our bodies. She weighs a good 20-25 lbs. now and the weight is basically "dead" weight. Since her muscle tone is practically non-existent, picking her up, moving her, even holding her takes a lot out of us. Yet, we lovingly to do these things in order to get through our day. We lift her from her wheelchair to change her diaper, place her at the table for meals, get her in her stander, have her sit on the couch, give her a bath, put her in the car, and play with her, among other situations. She now has a TLSO (Thoracic-Lumbar-Sacral Orthotic) that is cumbersome and adds weight--although it does provide some stability for her. We have found though, that we have to be even more careful when we pick her up when she's wearing it so it doesn't interfere with her g-tube button. She wears it through all of her waking hours. Holding her has become more of an "art' than anything else.
Caring for Ella is emotionally demanding. Watching your child suffer, deteriorate, and struggle is hard. Watching them go through it minute after minute, hour after hour, day after day, week after week, month after month, and year after year is parental torture. The instinct to want to fix the problem, control the situation, and relieve your child of the burden they are carrying weighs itself heavily on the emotional reserves. There is no end in sight from our viewpoint. While we may intellectually know that there is an end, emotionally speaking--there is none. Our lives have been altered. Not changed. Not turned upside down. Not even "taken a turn for the worst". Altered.
The actual make-up of who we are and how we respond to life is not the same make-up from two years ago. Our perspective on life, our expectations of the world, and our understanding of God is different.
Each day presents itself with a over-generous helping of exhaustion for us. The pressure that SMA inflicts on a family never really leaves. It changes form. It works its way into every facet of daily life, making its presence known. It challenges us spiritually, emotionally, physically, and financially. It tears at our hearts and grapples at our souls. It spends its time plotting ways to overcome our family, seeking every opportunity to destroy what we hold precious to our hearts, to our souls, to our very being. It threatens the dynamics of our family, wreaks havoc on its primary victim, and attempts to thwart the determination and courage of love.
The SMA Community refers to those living and afflicted with the disease as warriors. For those who have passed, they are referred to as "angels". The warrior connotation was disturbing to me at first, yet as I have witnessed my own flesh and blood in light of the disease housed in her body I can see the term "warrior" being an appropriate term.
They fight every day.
They fight to move their body.
They fight to eat their food.
They fight to move across a room.
They fight to lift a crayon.
They fight to raise their hand.
They fight to hold their head up.
They fight to touch their hair.
They fight to clear their lungs.
They fight to sleep restfully.
They fight to breathe normally.
They fight to see tomorrow.
They fight to for their very lives. Each and every day.
We're tired...along with so many other parents who have children afflicted with SMA (or any other disease for that matter). We wake up every morning knowing that the day will hold fatigue in its grip for us. Some days are better than others. Some days are intolerable. Some days are useless, and some days are productive. Some days hold promise while others defeat us.
It's not a matter of sleep. We wish it were. That would be an easy fix. If SMA was keeping us up at night with frequent sleep interruptions we could hire a night-nurse to take the overnight shift. That's not the case, however. Ella is waking up only twice, maybe three times a night. She needs to be turned in her sleep and her feeding tube needs to be shut off and flushed. All of those things take no more than a minute...no need to hire someone for that...we do them and go right back to sleep; just as if one were visiting the bathroom during the night.
No, it's not a matter of sleep or even the quality of sleep. We both find deep sleep through the night; we dream, toss and turn, and have a hard time waking from our slumber just as anyone else does. No, the quality of sleep is sufficient as is the quantity.
What is causing us to be so utterly tired then?
Stress.
Worry.
The lifestyle we now live.
Caring for Ella is physically demanding. No other way to put it. It's demanding of our bodies. She weighs a good 20-25 lbs. now and the weight is basically "dead" weight. Since her muscle tone is practically non-existent, picking her up, moving her, even holding her takes a lot out of us. Yet, we lovingly to do these things in order to get through our day. We lift her from her wheelchair to change her diaper, place her at the table for meals, get her in her stander, have her sit on the couch, give her a bath, put her in the car, and play with her, among other situations. She now has a TLSO (Thoracic-Lumbar-Sacral Orthotic) that is cumbersome and adds weight--although it does provide some stability for her. We have found though, that we have to be even more careful when we pick her up when she's wearing it so it doesn't interfere with her g-tube button. She wears it through all of her waking hours. Holding her has become more of an "art' than anything else.
Caring for Ella is emotionally demanding. Watching your child suffer, deteriorate, and struggle is hard. Watching them go through it minute after minute, hour after hour, day after day, week after week, month after month, and year after year is parental torture. The instinct to want to fix the problem, control the situation, and relieve your child of the burden they are carrying weighs itself heavily on the emotional reserves. There is no end in sight from our viewpoint. While we may intellectually know that there is an end, emotionally speaking--there is none. Our lives have been altered. Not changed. Not turned upside down. Not even "taken a turn for the worst". Altered.
The actual make-up of who we are and how we respond to life is not the same make-up from two years ago. Our perspective on life, our expectations of the world, and our understanding of God is different.
Each day presents itself with a over-generous helping of exhaustion for us. The pressure that SMA inflicts on a family never really leaves. It changes form. It works its way into every facet of daily life, making its presence known. It challenges us spiritually, emotionally, physically, and financially. It tears at our hearts and grapples at our souls. It spends its time plotting ways to overcome our family, seeking every opportunity to destroy what we hold precious to our hearts, to our souls, to our very being. It threatens the dynamics of our family, wreaks havoc on its primary victim, and attempts to thwart the determination and courage of love.
The SMA Community refers to those living and afflicted with the disease as warriors. For those who have passed, they are referred to as "angels". The warrior connotation was disturbing to me at first, yet as I have witnessed my own flesh and blood in light of the disease housed in her body I can see the term "warrior" being an appropriate term.
They fight every day.
They fight to move their body.
They fight to eat their food.
They fight to move across a room.
They fight to lift a crayon.
They fight to raise their hand.
They fight to hold their head up.
They fight to touch their hair.
They fight to clear their lungs.
They fight to sleep restfully.
They fight to breathe normally.
They fight to see tomorrow.
They fight to for their very lives. Each and every day.
We're tired...along with so many other parents who have children afflicted with SMA (or any other disease for that matter). We wake up every morning knowing that the day will hold fatigue in its grip for us. Some days are better than others. Some days are intolerable. Some days are useless, and some days are productive. Some days hold promise while others defeat us.
It's a whirlwind of emotions that runs from one part of our hearts to another, leaving traces of moments passed...
each one promising to bring us
closer
to
God.
