Cuddles and Crying

This morning, I went upstairs to wake up Asher and ended up a sobbing mess, cuddled up next to him as he slept the morning away.  Maybe it was the atmosphere--the room was slightly chilly and I was under the covers beside of him, feeling his heartbeat with my hand, everything quiet except for his breathing.

The thoughts wouldn't stop.
He's getting so big. Growing up. What if something happens to his body and can't be stopped? Will this still be happening when he's 13? 20? 40? How will he react? Will he include me? Will the seizures or the medication affect his ability to have children? If he chooses to have children and can, will they be ok if he has a seizure?  Will he live close to me? 

When I was worrying about the grandchildren I didn't even have yet, I realized what I was doing and I needed to stop.  But I felt this maternal devastation that I sometimes feel.  She doesn't come around too often, but when she does, I let her have her way with me.

Each heartbeat brought a what if? what if? what if? until I was weeping holding onto him. And I let myself do it.  And that is ok. Sometimes we need to feel the fear...face it head on. Sometimes the aftermath of that can even be healing.

I dried my eyes and got my little man up. We prepared for a day of fun and celebrating Fall as a family. He ran into friends at Chipotle and talked so much he forgot to eat.  We collected toys and trinkets and treasures at a food free Trunk or Treat.  We went on a scavenger hunt at Target and we have plans for two more fun things this evening.

Praying the entire time that we don't run into any strobe lights or Reese cups. But going anyway and trying to be abnormally normal.

And I'll wake up tomorrow and rush him into the shower and beg him to hurry as he ties his shoes and there won't be time for cuddles and crying.  The rush of the day will save me.  And that's ok, too.

I lay down and slept; I woke again, for the Lord sustained me. 

Psalm 3:5

Death: On Earth as it is in Heaven

A seed hidden in the heart of an apple is an orchard invisible. 

A Welsh Proverb

This year, I’ve stayed close to a friend, watching her grief unfold. I've grieved myself, grieved with her, grieved for her. No one ever wants to witness this in someone they care for so deeply, but grief has almost been another person in the room with us. I've tried to love her through it (and I will for the rest of our lives) and I hope I've been even just a little of what she's needed when she's missing so much. Grieving is hard, holy work and she's doing it beautifully.

Along with thinking about the lifespan of grief, I have also been thinking about death and what it means for us here. One day on the way home from taking Willow to school, I was listening to a song called Benediction by Josh Garrels  and I heard these lyrics:

“May you grow from a seed 

Into a tall, fruitful tree” 

Immediately, I saw a large, sturdy tree with thin leaves made of gold. Leaves that don't fall. Leaves that brush against each other softly and sound like a wind chime. It was so substantial and bright it almost hurt to look at it; yet, I couldn't look away. The leaves shone on everything around and brightened up that plot of land. 

Almost like that tree above except the leaves were actual gold. They shined like this one only more completely and in a way I can’t put into words. The light didn't come from the sun, but from within the leaves.  It was standing alone on its own hill and the base of the tree was made of something not of this world. Indestructible. 

It was perfect, beautiful, flawless.

The Lord put into my mind that this is what happens when bright, shining lights for Jesus die and I knew this vision was for my friend (and now, I know it's for you). Bright, shining lights can be 89 year old women, 23 year old men, 6 week forming babies in the womb and every variation in between. 

That tree was once a seed that God lovingly placed into the ground to grow and shoot out roots.  The seed bursting through the soil of the earth represents the birth from the womb. Every second earthside means growth and change and producing fruit. When the growth on earth ends, when the seasons no longer change the leaves, the season of death has come. (In my heart, I feel that when it's a child in the womb that dies, their tree is complete with as much purpose and light as a person who passes away earthside. At that child's death, their tree is as big and whole as a person who lived a long life. It is to be honored the same.)

And when that person dies their earthly death, guess what? No one chops down that tree. Are you hearing me? THIS IS THE MOST IMPORTANT PART OF WHAT I'M WRITING. 

No one chops down that tree. 

At the moment of death, that tree is solidified into something that no man can destroy. Against all odds and the nature of death, the tree’s roots and the base of the tree become impenetrable. Now that the person is in heaven, their tree can withstand anything. NO ONE CAN CHOP DOWN THIS TREE.  No one.  No one can take this tree away.  

And it’s like this on earth AS IT IS in Heaven. 
God told me that exact phrase. 

On earth as it is in heaven. 

The tree, the fruit. NO ONE CAN EVER TAKE IT AWAY. The fruit of their life, the evidence of their growth, on earth as it is in heaven. Somehow this tree is both places. You visit the tree when you remember, when you tell stories...the tree is a legacy no one can take away. 

The fruit continues to produce, even in death. 

But this tree is not to be worshipped, sweet one, or you'll lose your grip on this life. It is to be remembered and enjoyed. It's FROM God, it's not God. It's evidence of God's goodness and faithfulness on earth as it is in Heaven.

The name of the song that God spoke through. 

Benediction: the utterance or bestowing of a blessing; The noun benediction comes from the Latin roots bene, meaning "well" and diction meaning "to speak" — literally to speak well of. 

I didn't know the meaning of the name of the song title before I started writing down this vision.  What benediction means...where the word comes from…"well." It is well!  The woman I'm so close to and who I've been watching dance with grief has been holding onto this song from day 1. That's not a coincidence, God wanted her to see it. He wants you to see it. 

And the rest of it... “to speak,” to speak well of…that’s ALL people do about bright shining lights for Jesus when they're gone. It's their legacy. That’s just a bonus to everything above, it just blew me away.  To speak well of a person who is gone is to honor and acknowledge that tree. It gives purpose to their life and death and life. 

The tree: 

Strong. Sturdy. Steadfast. Shining. Singing.

Eternally.

Now that God's child has accomplished her purpose on earth, she’s in her eternity in Heaven. Every time I see a Fall tree with golden leaves I will think of this.  The sun and the leaves’ colors can work together to remind me of the vision that the Lord graciously gave me. For her, for me, for you.

God uses the nature His own hands created to remind us of Him

Over and over and over

When nothing makes sense anymore, know that the good stuff doesn’t make sense either.  In a glorious way!  His ways are far above our ways but that doesn’t mean that we’re too stupid to understand and we blindly follow Him.  It means that Heavenly ways are above earthly ways and they are good for us. We just can’t grasp them yet.  Hold on!

Isaiah 55:8-13

For my thoughts are not your thoughts,

neither are your ways my ways, declares the Lord.

For as the heavens are higher than the earth,

so are my ways higher than your ways

and my thoughts than your thoughts.

“For as the rain and the snow come down from heaven

and do not return there but water the earth,

making it bring forth and sprout,

giving seed to the sower and bread to the eater,

so shall my word be that goes out from my mouth;

it shall not return to me empty,

but it shall accomplish that which I purpose,

and shall succeed in the thing for which I sent it.

“For you shall go out in joy

and be led forth in peace;

the mountains and the hills before you

shall break forth into singing,

and all the trees of the field shall clap their hands.

Instead of the thorn shall come up the cypress;

instead of the brier shall come up the myrtle;

and it shall make a name for the Lord,

an everlasting sign that shall not be cut off.”

If you've lost someone, I am so sorry. I know I can't fix that, no one can. That's not even the point. The deeper you love, the deeper you grieve. To take away grief would mean you loved less. That can never be. Grief is real and it's brutal and it's needed. Grief will last as long as your love does.

This is one of my favorite pieces of artwork. Jesus in the Garden of Gethsemane, grieving in prayer. Praying, asking, knowing it wasn't changing his future but asking anyway. Sweating drops of blood, he grieved so hard. Jesus in his brutal grief gives you permission to grieve hard and don't let anyone tell you differently.

If you can hear one thing, hear this: 

No one took that person away from you. No one chopped down their tree at death. That tree is more alive now than ever. The leaves are making their song and it's for everyone to hear to bring glory to God AND for you. A song of remembrance. A song of their story. You can sit under that tree and remember but you can't stay there. It's tempting to bring your blanket and cover up under that tree forever, to shut out the world.

For now you can, you need to sit there. That's ok. Needed. Expected. Rest against the steadfast trunk and let the leaves sing you a song. One day, you'll get up and dance in the field next to the tree. And you can go back to visit anytime. The good thing is, because God loves you so much, you can hear hints of the music everywhere you go. Even if you leave the hill or the field or the country. You'll hear the music everywhere. It will hurt and it will heal. It will slay and it will soothe.

A real life Golden Tree. In my mother-in-law's yard, who is now a flawless, indestructable tree on earth as in heaven

Diagnosis Road: Jessica's Story (Periventricular Leukomalacia, verbal and oral apraxia)

The diagnosed: Jessica, 3 with her mom Amanda

Name the diagnosis and tell us as much of the diagnosis story as you wish.

Jessica was born at 33.6 weeks. I was considered a high risk pregnancy because of some blood work that came back showing that Jessica had a 1 in 77 chance of having Down’s Syndrome. At 32 weeks, I showed signs of preeclampsia and was taken off work and placed on modified bed rest. I spent 3 days in the hospital. They let me go home under the guise that I would follow doctor’s orders and rest. I went back to see my OB/GYN 4 days after being released from the hospital and she sent me back and told me that I was staying until I gave birth at either 34 or 37 weeks. 

That was a Thursday and by Saturday, the on-call doctors made the decision to induce because Jessica wasn’t performing when hooked up to the monitor. I was induced and chose a cesarean section because they wanted to re-induce me but after going over 24 hours on IV Fluids and ice-chips, I was in no condition to try a vaginal birth. In fact, I told the doctor she was coming out and she was coming out tonight and that he wasn’t sticking the cervidil back in me.

Jessica spent 3 weeks in the NICU where she flourished. She did not have Down Syndrome and was given a clean bill of health. At 7 months, Jessica was seen by a neurologist who ordered an MRI and eye exam. It was ordered because she though Jessica was showing signs of strambismus (crossed eyes). Jessica’s eyes were fine but her MRI was not. I wasn't shocked. It's like deep down I knew there was something off. There was always the possibility that we knew she would have issues because of the blood work while pregnant.

The MRI showed signs of mild Periventricular Leukomalacia, which is a neurological condition where the white matter has decayed or died leaving empty areas in the brain resulting in lateral ventricles that fill with fluid or leukomalacia. PVL is a wait and see diagnosis and most children are eventually diagnosed with Cerebral Palsy by 2 years old. Jessica is not one of those children. She is now 3 and the only way you can tell she has something wrong is to watch her walk. The part of the brain that is affected for her is the gross motor area. We see a neurologist once a year and she sees an orthopedic specialist for her abnormal gait.

At 14 months, Jessica had to have her tongue clipped because she was tongue-tied. She had trouble even getting her tongue to her teeth let alone stick it out. Once clipped we though that she would start talking. We could not have been more wrong. At 22 months, we had her evaluated for CAS-Childhood Apraxia of Speech and were given the diagnosis of Oral and Verbal Apraxia. Verbal Apraxia means that Jessica has trouble turning on her voice box to talk and Oral Apraxia means that she has trouble using her tongue and forming her mouth the right way to get sounds out. After fighting with the insurance, we were finally able to get speech therapy covered. Jessica started private speech therapy in February 2016 and by May was finally talking.

Her PVL has not progressed as it is a disease that once the damage is done, it is done and you just wait to see how it affects you.

How does it affect your relationships?

I’m not gonna sugar coat it, it is tough sometimes because you have to figure out how to spend time and money, but my husband and I are stronger because of it. We knew that once we had the diagnosis, we could not treat Jessica as if she was a fragile creature that would break. We had to treat her as we would a child who did not have disabilities. This has made Jessica into the person she is. She is very strong-willed and will not accept no as an answer. She works hard to achieve every little milestone. I am blessed to work at a preschool where they understand that my daughter has special needs and that I sometimes need to leave early or take a day off to get her to all of her appointments.

What is one of the hardest parts of living with this diagnosis that people may not expect?

I would have to say the hardest part of the PVL diagnosis is not knowing the outcome. PVL is never going to get better. My daughter may be in therapy for a long time working on her walking and jumping abilities. Her normal is attending therapy on a weekly basis. She may not get to play sports or dance if she wants to because of the damage. It’s the waiting and seeing that sucks the most.

With the apraxia diagnosis, we can see the progress that she is making. She has trouble with some sounds but has come so far. Normal for her is speech 2-4 times a week.

What is an unexpectedly good part?

Seeing all the progress that my Jessica is making. She struggles but doesn’t let it get to her. While everyone is looking for a superhero, I am raising mine.

Are there certain places you just can’t go and do you have any advice for how the world can be more inclusive? 

I am blessed because I don’t feel as if there is any place that my family cannot go.

When people try to comfort you, what is the least comforting thing they say (even though it may come from a good, kind place)?

What hurts are the looks that people give when I tell them that she is a special needs child because they don’t see the disability. It is not a visible disability that anyone can see and you can only tell when Jessica is very tired that it is bothering her. The looks of disbelief in people who don’t know my family or interact with us is astounding.

What do you want others to know about parenting/living with this diagnosis?

I don't treat Jessica as if she's broken. The disability is her normal and she is a normal child. I hate that she is labeled special needs because of the diagnosis. She is normal because her special needs are her normal. I do not treat her any different than I would a child who does not have her needs. She has flourished and I believe that is because we have taught her that she can do anything and be anything she wants. I also believe that the reason we have continued to beat the odds and not get a Cerebral Palsy diagnosis is because we have been so proactive in her therapies.

Do you have any resources you’d like to share in order to spread awareness of/support for your diagnosis or condition? 

This is my blog where I talk about the random stuff—love, laughter, sadness-illness-of living with Jessica.

https://lifewithjessicasite.wordpress.com/

This is the PVL group and they have been the biggest support in understanding what is going on with my child.

https://www.facebook.com/groups/6913903174/

This is the Apraxia group and they have been a huge help.

https://www.facebook.com/groups/apraxia.kids.group/

It is rough navigating the world of an IEP--the Apraxia and PVL groups have helped me with them.