Dear Friends, I wrote this two summers ago. I think about it all the time: the reason "Why I Sing." Yesterday I sang in church with the worship team, and I thought about it again afterwards. People will sometimes say things like, "I enjoyed your singing." But that's not why I sing. I don't sing because of the people in the room and what they think of me. Not at all.
I have kept this post to myself for far too long, and in recent days I have been pressed yet again to share it. The reason why I sing. So even though it is difficult to put the details of our lives out there, I am sharing it. Thank you for reading.
June 2017
Monday.
I am.
I am standing at the sink, washing dishes. Thinking about Lilli. Singing a song to myself. “I Am” by David Crowder.
I am
holding onto you
I am
holding onto you
In the middle of the storm
I am holding on
I am.
We sang it in church yesterday morning. My mouth sang the words, but my soul cried them out.
Have you ever been caught in a terrible storm? I remember as a young child, when a big hurricane was headed our way. My parents both ran around outside and secured things. We knew the storm was coming, and I remember the black, ominous clouds rolling and the sky darkening, and the wind picking up. We all go through stormy times. When we are in the middle of the storm, we can lose our bearings. The wind of troubles whips around us and blows us to and fro. It is dark. We cannot see. The sun is always there, behind the clouds. The sun always rises, every day. But most times, in the midst of a terrible storm, we cannot see the sun at all.
In the storm, everything else fades. All the good, delightful, fun things in life, all the sweet, soft, dear things fade away. And we are in survival mode. We have to grab onto something or someone to hold onto so we are not swept away with the wind and rain. You don't always know what you are going to hold onto ahead of time.
You realize in the middle of the storm.
In the darkest storm, in the hurricane, you realize what you can hold onto.
I sing the song softly to myself at the kitchen sink as I wash. My mind drifts to the scene of last night…..Sunday night.
Lilli having a seizure. All the lights off...
Sunday Night
…. I am laying in bed in the dark, thinking. Trying to calm my mind and heart. Physically exhausted but mentally wide awake from to-do lists running through my head. Trying to keep my head above water.
I sense my husband sitting up quickly and checking on Lilli for a second. Waiting. Listening.
This happens all the time. I wait, like a statue. Not breathing. If the light stays off and he lays back down, I can breathe. If the light goes on, we are in trouble.
The lamp on his side of the bed comes on and light floods the room. Like a fire drill going off, I know what to do.
Words get in the way in situations like this. They take too much time.
I bolt out of bed while shoving my glasses on my face. My husband opens the plastic Diastat pack. Even the plastic is too slow for us in these precious seconds.
Some people who have seizures are told to wait before giving the Diastat. Because most people’s seizures last only a minute or two, and they end on their own. A neurologist told us years ago that Lilli’s types of seizures are not guaranteed to stop. And they can get going and last for a long time, causing more damage. So we were told not to wait, to immediately give her the powerful medicine that will hopefully stop the seizure.
But it does not always work.
When Lilli was a toddler, many of her seizures lasted for the 911 call and the waiting for them to arrive, and the entire 20 minute ride to the hospital. 45 minute seizures, we remember many times. Those were the ones when she had lasting damage and forgot how to eat and walk. After one seizure she regressed and literally ate pureed baby food for four years until she slowly relearned how to chew and eat real food. For several years, her seizures were 3-5 minutes long. But seizures are always changing, and for the last few years, most of Lilli’s seizures have been 8-10 minutes long, or longer.
All of these experiences have accumulated a large amount of stress and trauma over the years.
Frightened, we unwind the oxygen tube and get the mask ready to help her. She makes strangled desperate gasping sounds while convulsing. The pulseoximeter numbers are low and alarming to us.
This is not good. Not good at all.
I glance at the clock to note the time. Minutes have passed but mere seconds stretch out in slow motion, even though everything is happening so fast. During a seizure, time is warped and does not make sense.
I am a calm sort of panic. We both know that the seizure should have stopped by now, and it seems like it is only getting worse. Why. Why isn’t this seizure stopping. It should be stopping by now. The minutes march on, and the panic rises up from within.
“Get another Diastat!” is the next thing my husband says in controlled alarm. We know how to stay calm but we are freaking out inside. There is “long” as in, this is torturous and heartbreaking and feels never ending. And then there is “too long” as in, she might die: call 911.
This is too long.
I am flying out of the bedroom and running down the hall in bare feet to the kitchen, grabbing another box with a Diastat from the basket on top of the fridge. I pray a kind of prayer that you only pray in times like this. I can’t even really make more words come out. It’s just His name. But I know that I only need to say His name. He doesn’t need a lot of words.
I run back into the bedroom. Our toddler, Nate, is awake and confused. I can't take him out of the room, there's no time. He comes to Lilli on the bed and looks at her, not understanding. He is mute, taking it all in. The pulseox keeps beeping. It does not like her low O2 and yells at us. The O2 is gushing through the mask. Lilli is still making sounds of desperation.
I hope Chloe and Josh don’t hear and wake up and come in here too. I don’t want them to see this.
Now we have reached the 911 call point. “Should I call? It’s been too long. I think we should call!” I say. “I’m calling.”
“Ok call,” my husband responds while working on Lilli with the second Diastat. We are both scared. But there are no tears. No screaming or yelling or crying. This is because we have done this for 13 years. But it never gets easier. It ever feels “normal.” I never feel like, “Oh, I can handle this, we’ve done this dozens of times for years.” No. It is always a life or death situation. People die from seizures. It wears a part of me away that I cannot explain.
As I dial 911 I have a slow motion feeling creep in that I have had in times before like this.
What if this is it?
What if this is THE seizure that takes Lilli from us?
This could be the one.
Don’t let it be the one.
Don’t let it be the one.
I rarely let myself think this awful secret thought.
Any seizure could be “the one.” I know more than one set of parents who have lost their children to a seizure.
I don’t want it. I don’t want this. I push the thought away because it is like the earth beneath us crumbling away into a sinkhole.
When you dial 911, you expect someone to answer. The voice always comes up on the other end. But still, you wait in agony during those brief seconds until you hear that blessed voice.
“911 what’s your emergency?”
Thank God that there is a real person on the other end of this line, calm, controlled, ready to send help. I never take that for granted.
The seizure has finally stopped, but Lilli is now loaded with powerful medication that could cause respiratory problems. My husband scoops 85 pound limp Lilli up in his strong arms and carries her out to the couch. I follow behind carrying the pulseox and wheeling the O2 tank. Nate pads down the hall after us, curious and unaffected. Josh and Chloe are still in their beds. They missed this one, thankfully.
I will not tell them.
We will wait for the ambulance. For the helpers, who will come in and check Lilli.
Red lights are flashing out in front of the house. I am wearing my pjs and I don’t care. I run outside and wave my arms so they know this is the house with the emergency.
The EMTs come in while my dog barks ferociously. They are serious, pleasant, and purposefully calm.
They examine Lilli while she lays limp, unconscious in my husband’s arms. They ask questions. Nate wanders around and picks up toys, playing like we are all just having a little party here at midnight, with some nice visitors who just decided to stop by. This weird life is normal to him.
They stay for a while. Lilli is OK. She scared us to death, but she will be OK.
She does not need to go to the hospital. We have been down that road many times in years past. She is finally stable. We already have a neurologist and medication and a plan. Nothing else can be done for us.
They leave. My husband carries her down the hall. Her long teenager legs dangling. She is still out of it. I pray that she does not remember any of this. We shut all the lights off and put Lilli in bed with us.
I can't sleep.
I sit up and stare at the red pulseox numbers for awhile, watching them for fluctuation. Praying. Trying to calm my heart. This anxious heart, drowning in a stormy sea.
So I will call upon Your name
And keep my eyes above the waves
When oceans rise, my soul will rest in Your embrace
For I am Yours and You are mine
(“Oceans” - Hillsong United)
Lilli is sick. She is nauseous. She cannot tell me how she feels, but I just know. She will not eat or drink. She vomits all day. From the seizure, or from the meds? Or both? This is always the million dollar question. She is always like this the day after. She can barely walk, bumping into walls and stumbling over everything like a drunk person. Every twenty minutes, she coughs and I sprint to her with a bowl and hold it under her mouth while she vomits. She has trouble with this. She is like a toddler who does not know what to do, how to bend over so you don’t get it all over yourself. It’s like she doesn’t even know how to vomit when it comes. She doesn’t understand her own body most of the time. I push her head down into a lower position so it comes out and she doesn’t choke on it.
I spend the entire day tending to her and cleaning up after her, every 20 minutes.
I wash a million things, cleaning up all day long from this onslaught of craziness that a seizure brings. I stand at the sink and try to gather my thoughts and make life seem organized and simple again. But I cannot. I can only surrender and pray.
I am emotionally drowning at the sink while washing pots that my daughter has thrown up into. I am lost at sea in all of this.
I need an anchor in this storm.
I could choose bitterness, or I could choose grace. I choose grace. I cling to the grace that has been given to me, even when I didn't deserve it at all. It doesn't mean that I don't struggle with how hard this all is. It is so, so very hard sometimes. But in the waves, I do not look down. I look up.
A song floats to me. It comes to me because I have sung it recently, when the sun was shining and everything was good and there was no hint of a storm on the horizon. I begin to sing softly to myself.
I am
holding onto you
I am
holding onto you
In the middle of the storm
I am holding on
I am.
I am drinking coffee with my husband.
It has been tough. We are worn out. but hopeful that she will be better today.
I look at my husband and ask him. “When Lilli was having that seizure the other night, I was thinking, this could be the one. Do you ever think that?”
“All the time.” He said immediately.
“Every time.”
We sit in silence, thinking about that.
He leaves for work. I have the words to the song in my head all day again. My heart clings to these words. I have nothing else to cling to. When the storms come, and the earth begins to crumble away and we are sliding, this is what I have. This hope, this faith in my God who is bigger than all of this. This God who created us and knows all of these details. This God who spoke stars into existence. So many stars that we cannot even count them all. This God who is working all things together and weaving all of the details of our lives together in a massive, mysterious, beautiful tapestry. That He is holding onto us, and we are holding onto him.
I am holding on.
I am
holding onto you
I am
holding onto you
In the middle of the storm
I am holding on, I am.
When I spend time with Him, really spend time, I know Him more. When a storm comes, I know that He is there with me in the middle of the storm. When others ask, “Where is God?” I know that He is right there, in the middle of the storm. And I am holding onto Him. He gives a peace that cannot be explained.
If you put His words in your heart when life is calm, the words will come to you when you are drowning in stormy seas. And if you sing praises to Him when things are good, a song will be on your lips when the earth is crumbling beneath you, and you have nothing to hold onto except for your faith in Him.
Your love is devoted like a ring of solid gold
Like a vow that is tested like a covenant of old
Your love is enduring through the winter rain
And beyond the horizon with mercy for today
Faithful You have been and faithful you will be
Words get in the way in situations like this. They take too much time.
I bolt out of bed while shoving my glasses on my face. My husband opens the plastic Diastat pack. Even the plastic is too slow for us in these precious seconds.
Some people who have seizures are told to wait before giving the Diastat. Because most people’s seizures last only a minute or two, and they end on their own. A neurologist told us years ago that Lilli’s types of seizures are not guaranteed to stop. And they can get going and last for a long time, causing more damage. So we were told not to wait, to immediately give her the powerful medicine that will hopefully stop the seizure.
But it does not always work.
When Lilli was a toddler, many of her seizures lasted for the 911 call and the waiting for them to arrive, and the entire 20 minute ride to the hospital. 45 minute seizures, we remember many times. Those were the ones when she had lasting damage and forgot how to eat and walk. After one seizure she regressed and literally ate pureed baby food for four years until she slowly relearned how to chew and eat real food. For several years, her seizures were 3-5 minutes long. But seizures are always changing, and for the last few years, most of Lilli’s seizures have been 8-10 minutes long, or longer.
All of these experiences have accumulated a large amount of stress and trauma over the years.
Frightened, we unwind the oxygen tube and get the mask ready to help her. She makes strangled desperate gasping sounds while convulsing. The pulseoximeter numbers are low and alarming to us.
This is not good. Not good at all.
I glance at the clock to note the time. Minutes have passed but mere seconds stretch out in slow motion, even though everything is happening so fast. During a seizure, time is warped and does not make sense.
I am a calm sort of panic. We both know that the seizure should have stopped by now, and it seems like it is only getting worse. Why. Why isn’t this seizure stopping. It should be stopping by now. The minutes march on, and the panic rises up from within.
“Get another Diastat!” is the next thing my husband says in controlled alarm. We know how to stay calm but we are freaking out inside. There is “long” as in, this is torturous and heartbreaking and feels never ending. And then there is “too long” as in, she might die: call 911.
This is too long.
I am flying out of the bedroom and running down the hall in bare feet to the kitchen, grabbing another box with a Diastat from the basket on top of the fridge. I pray a kind of prayer that you only pray in times like this. I can’t even really make more words come out. It’s just His name. But I know that I only need to say His name. He doesn’t need a lot of words.
I run back into the bedroom. Our toddler, Nate, is awake and confused. I can't take him out of the room, there's no time. He comes to Lilli on the bed and looks at her, not understanding. He is mute, taking it all in. The pulseox keeps beeping. It does not like her low O2 and yells at us. The O2 is gushing through the mask. Lilli is still making sounds of desperation.
I hope Chloe and Josh don’t hear and wake up and come in here too. I don’t want them to see this.
Now we have reached the 911 call point. “Should I call? It’s been too long. I think we should call!” I say. “I’m calling.”
“Ok call,” my husband responds while working on Lilli with the second Diastat. We are both scared. But there are no tears. No screaming or yelling or crying. This is because we have done this for 13 years. But it never gets easier. It ever feels “normal.” I never feel like, “Oh, I can handle this, we’ve done this dozens of times for years.” No. It is always a life or death situation. People die from seizures. It wears a part of me away that I cannot explain.
As I dial 911 I have a slow motion feeling creep in that I have had in times before like this.
What if this is it?
What if this is THE seizure that takes Lilli from us?
This could be the one.
Don’t let it be the one.
Don’t let it be the one.
I rarely let myself think this awful secret thought.
Any seizure could be “the one.” I know more than one set of parents who have lost their children to a seizure.
I don’t want it. I don’t want this. I push the thought away because it is like the earth beneath us crumbling away into a sinkhole.
When you dial 911, you expect someone to answer. The voice always comes up on the other end. But still, you wait in agony during those brief seconds until you hear that blessed voice.
“911 what’s your emergency?”
Thank God that there is a real person on the other end of this line, calm, controlled, ready to send help. I never take that for granted.
The seizure has finally stopped, but Lilli is now loaded with powerful medication that could cause respiratory problems. My husband scoops 85 pound limp Lilli up in his strong arms and carries her out to the couch. I follow behind carrying the pulseox and wheeling the O2 tank. Nate pads down the hall after us, curious and unaffected. Josh and Chloe are still in their beds. They missed this one, thankfully.
I will not tell them.
We will wait for the ambulance. For the helpers, who will come in and check Lilli.
Red lights are flashing out in front of the house. I am wearing my pjs and I don’t care. I run outside and wave my arms so they know this is the house with the emergency.
The EMTs come in while my dog barks ferociously. They are serious, pleasant, and purposefully calm.
They examine Lilli while she lays limp, unconscious in my husband’s arms. They ask questions. Nate wanders around and picks up toys, playing like we are all just having a little party here at midnight, with some nice visitors who just decided to stop by. This weird life is normal to him.
They stay for a while. Lilli is OK. She scared us to death, but she will be OK.
She does not need to go to the hospital. We have been down that road many times in years past. She is finally stable. We already have a neurologist and medication and a plan. Nothing else can be done for us.
They leave. My husband carries her down the hall. Her long teenager legs dangling. She is still out of it. I pray that she does not remember any of this. We shut all the lights off and put Lilli in bed with us.
I can't sleep.
I sit up and stare at the red pulseox numbers for awhile, watching them for fluctuation. Praying. Trying to calm my heart. This anxious heart, drowning in a stormy sea.
So I will call upon Your name
And keep my eyes above the waves
When oceans rise, my soul will rest in Your embrace
For I am Yours and You are mine
(“Oceans” - Hillsong United)
The Day After - Monday Morning
Lilli is sick. She is nauseous. She cannot tell me how she feels, but I just know. She will not eat or drink. She vomits all day. From the seizure, or from the meds? Or both? This is always the million dollar question. She is always like this the day after. She can barely walk, bumping into walls and stumbling over everything like a drunk person. Every twenty minutes, she coughs and I sprint to her with a bowl and hold it under her mouth while she vomits. She has trouble with this. She is like a toddler who does not know what to do, how to bend over so you don’t get it all over yourself. It’s like she doesn’t even know how to vomit when it comes. She doesn’t understand her own body most of the time. I push her head down into a lower position so it comes out and she doesn’t choke on it.
I spend the entire day tending to her and cleaning up after her, every 20 minutes.
I wash a million things, cleaning up all day long from this onslaught of craziness that a seizure brings. I stand at the sink and try to gather my thoughts and make life seem organized and simple again. But I cannot. I can only surrender and pray.
I am emotionally drowning at the sink while washing pots that my daughter has thrown up into. I am lost at sea in all of this.
I need an anchor in this storm.
I could choose bitterness, or I could choose grace. I choose grace. I cling to the grace that has been given to me, even when I didn't deserve it at all. It doesn't mean that I don't struggle with how hard this all is. It is so, so very hard sometimes. But in the waves, I do not look down. I look up.
A song floats to me. It comes to me because I have sung it recently, when the sun was shining and everything was good and there was no hint of a storm on the horizon. I begin to sing softly to myself.
I am
holding onto you
I am
holding onto you
In the middle of the storm
I am holding on
I am.
Tuesday Morning
I am drinking coffee with my husband.
It has been tough. We are worn out. but hopeful that she will be better today.
I look at my husband and ask him. “When Lilli was having that seizure the other night, I was thinking, this could be the one. Do you ever think that?”
“All the time.” He said immediately.
“Every time.”
We sit in silence, thinking about that.
He leaves for work. I have the words to the song in my head all day again. My heart clings to these words. I have nothing else to cling to. When the storms come, and the earth begins to crumble away and we are sliding, this is what I have. This hope, this faith in my God who is bigger than all of this. This God who created us and knows all of these details. This God who spoke stars into existence. So many stars that we cannot even count them all. This God who is working all things together and weaving all of the details of our lives together in a massive, mysterious, beautiful tapestry. That He is holding onto us, and we are holding onto him.
I am holding on.
I am
holding onto you
I am
holding onto you
In the middle of the storm
I am holding on, I am.
When I spend time with Him, really spend time, I know Him more. When a storm comes, I know that He is there with me in the middle of the storm. When others ask, “Where is God?” I know that He is right there, in the middle of the storm. And I am holding onto Him. He gives a peace that cannot be explained.
If you put His words in your heart when life is calm, the words will come to you when you are drowning in stormy seas. And if you sing praises to Him when things are good, a song will be on your lips when the earth is crumbling beneath you, and you have nothing to hold onto except for your faith in Him.
Your love is devoted like a ring of solid gold
Like a vow that is tested like a covenant of old
Your love is enduring through the winter rain
And beyond the horizon with mercy for today
Faithful You have been and faithful you will be
You pledge yourself to me and it's why I sing
Your praise will ever be on my lips, ever be on my lips
(Ever Be - by Kalley Heiligenthal)
Indeed, God is faithful. We are not promised a perfect, happy life. Every single one of us on earth has trials, hardships, and heartbreak.
But God is faithful.
Faithful He has been to me. And faithful He has promised to always be. This I cannot simply explain in a few sentences. But He is good, and He is faithful.
And it's why I sing.
Your praise will ever be on my lips, ever be on my lips
(Ever Be - by Kalley Heiligenthal)
Indeed, God is faithful. We are not promised a perfect, happy life. Every single one of us on earth has trials, hardships, and heartbreak.
But God is faithful.
Faithful He has been to me. And faithful He has promised to always be. This I cannot simply explain in a few sentences. But He is good, and He is faithful.
And it's why I sing.
