Wednesday, August 31, 2016

The Jungle

I knew it would come. And when I felt it coming I was proactive. My breakdown, after Emmaus being so sick, after the chaos of the home repairs and move. I knew it would creep in. So here I am faithfully attending counseling. Again. Counseling- you know, the magical place you go to spent hundreds of dollars to iron out the wrinkles that reside in the depths of your being. Every week I feel like skipping. Every week I show up. And after the fifty minutes of hard work I leave more aware, more raw, leaning into this vast expanse of grief that resides in my life.

I feel guilty for grieving. Somewhere I have the belief that because God spared Emmaus' life I should only be thankful. And I am indeed thankful. But also there is the ever present grief that is like a veil over my life.  The internal struggle in the fact that she SHOULD NOT have the battles she does. That the brokenness of Tuberous Sclerosis isn't fair. It is not right.  And in a whole perfect world- it just wouldn't be. This spring I went from "knowing" that it was likely I would out live Emmaus (someday). To the very real reality of- "she literally she could get sick enough that it could happen any time". Bam. That is a lot to deal with.

Anyway- today during counseling my counselor was weighing in that he felt a tension in holding this grief with me. His natural bend was to suggest we should find a way to figure it out, but that in all reality this just isn't a grief you deal with, and move on from.
When I was 21 and broke up with my ex boyfriend who I was SO SURE I would marry. Who I cared about more than even myself at the time- it wrecked me. HARD. So I went to counseling to try to pull myself back together.  And I grieved, healed, and moved on.  I have been expecting to do that with this grief. But the truth is, when you are grieving your child's life long ailment, her struggles, how it has changed and impacted your life, and the hardness that is brings- it isn't a "deal with it kind of grief". My counselor called the grief I am dealing with "Wild" and something just clicked.

My grief is wild. Just like the love I have for Emmaus is wild.

If you know me you know I love clean, but whimsical landscapes.  I would always choose for my yard to be manicured, but with some purposefully whimsical landscaping. Lanterns hanging from the trees, a stone path to walk along. Neat. Tidy. But room for a little contained wild.

But the grief of having a child with a chronic disease. The grief of special education, and of silence from her sweet face. The grief in every seizure, sedation, surgery, med change. The grief in the very real prospect of losing her. That isn't a whimsical landscape. In fact it is a FREAKING JUNGLE.

I keep trying to prune the jungle. And then I get so discouraged and annoyed that all my pruning isn't doing much. And I even wonder if my inability to prune the jungle is because I am weak. But LET'S BE HONEST trying to prune the jungle is kinda impossible.  It is never going to be an organized, whimsical landscape.
So today I start trying to live in the jungle.  (I hope there aren't many bugs. And if there are I am gonna need some DEET. Forget your essential oils. I need DEET. I hate bug bites. Bugs. BAH- I digress)

Anyway- these are today's thoughts on grief. It is wild. And I need to learn to live and thrive within my grieving. Because it isn't going anywhere. It isn't a grief you fix.


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Saturday, August 20, 2016

My Three

Today Shiloh sweetly helped Emmaus get her shoes on. Without being asked. In fact- I don't think I have ever asked shiloh to help Emmaus get her shoes on- so it was likely all her idea. She put them on her all by herself with Emmaus trying to kick her in the face the whole time. Then checked with me to make sure "are dey on da white feet mama? Or are dey bakwards?"  Shiloh also has started praising Emmaus for things. Which might just be the sweetest things I have ever encountered. She also tried to encourage Emmaus to eat her yogurt last night by doing the "airplane" into her mouth.  I want to be more like Shiloh. *Maybe not the whiney, typical three year old melt down parts. But I want to be able to see what people need, and help meet their needs. She is just the best sister!


And then there is this. I mean o.emmmmm.geeee. She now thinks she is a big kid. And it is rude. And cute. She also has such a sweet relationship with Shiloh. They will be besties I have no doubt.
I am so thankful to be the mom of these sweet girls. And I am thankful they have each other. 
...A cord of three is not easily broken. 

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Thursday, July 21, 2016

Lamenting

We moved. It was perhaps one of the most chaotic things I have ever planned.  In fact, nothing went as I planned- imagine that. I cried. Multiple times. I literally felt by the end of the weekend that I had been run over by a truck. So by the time Tuesday rolled around I had done a bit of processing and I found myself sitting in my counselors office lamenting about the woes of moving, of disappointment. And how following this crazy season of life my margin for rolling with the punches is much thinner.
(I realized about a month ago that in all reality I am just not okay after our scare with Emmaus- and so I needed to talk about it. Dan and I had previously seen a great counselor- so I called him up and bam. Here I am again sitting in his office every Tuesday.)
Lamenting.
What does that even mean? That is what he has challenged me to do. Lament. (It means: To express one's deep grief about. Or to express deep regret or disappointment about something considered unsatisfactory, unreasonable or unfair)
So I lament. Holding with one hand the very truths I believe so deeply- God is good, He loves me, and He wants good things for me.
And with the other I scream aloud. THIS IS NOT OKAY.

And you know what? I don't feel like it's okay. I am sure I will find my peace again with the life I have been given, with the reality that my daughter has tuberous sclerosis and that life is often just hard. But right now, it just isn't okay.

I like things to be pretty, to be smoothed over. And so even when things are hard I like to be able to focus my heart on hope. The good. The way God has provided- cause my has He ever provided for us.
So learning that I can have a heart of thanksgiving- and still truly wrestle with these things and not have it be smoothed over feels hard. It is raw and rough and ugly.

So although I have always strived for my blogs to be honest and real- they might not be so pretty for a while.

Because it just isn't okay that my daughter has tuberous sclerosis. autism.
It is not okay that pneumonia almost killed her.
It is not okay that the med that helped her progress had such horrible side effects. And now isn't an option.
It is not okay that she cannot talk to me, or tell me her needs, her likes or how her day was.
It is not okay that she has seizures.
It is not okay that appointments, medicines, and therapies fill her day.
It is not okay that I have to explain to Shiloh why Emmaus can't talk. Or hear her pray that "Mae Mae would have no seizures"
IT IS NOT OKAY. IT SUCKS. IT IS BROKEN. AND UNFAIR. and my heart is broken over it.

But. God is Good. He loves me. And He wants good things for me (And Emmaus!). And in my lamenting- I will never cease to believe or say that. Because it is all I know for sure.




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Wednesday, June 29, 2016

Scars and Wounds and Messy Stuff.

In the middle of the night last night as I was comforting my almost 11 month old for probably the third time that night, laying there with her on top of me because that is the only way she would quiet down and sleep,  I literally had the thought  “I sure don’t like you as much as I thought I would when you were an itty baby” WOW.  That is what 5 years of unpredictable sleep has done to my thought process.  Don’t worry- I liked her again this am when her chubby self got to belly laughing.  The funny thing is- three kids in you would think I would have an idea of why the heck she was up so much last night, but I just have no idea. Teeth? Ears? She just want to snuggle? I DON’T EVEN PRETEND TO KNOW.  I swear these kids might be trying to kill me.
We sold our house. We have been thinking about moving for a year or so, and before Emmaus got sick started the process and well now it’s done.  We will be renting in a nearby city close to some friends of ours (like our back yards touch) for a while.  The rest will depend on schools for Emmaus and where God leads us in reality.
Our house sold fast. 8 days. Which felt like 100. On day 7 I cried to my sister-in-law about how “of course our house wasn't selling fast because nothing is that easy for us” (insert deeper issue/feelings  I should sort out).  We had one offer before that which was so low it was a bit offensive.  So I was feeling quite defeated. Beat up. We had close to 75 showing in 8 days and so we basically weren’t home for a week- and then, after my meltdown we had a great offer the next day. 
Let’s be honest- I needed to have the meltdown. Like my wise sister-in-law pointed out I am a do-er.  I am calm in crisis, I get what needs to be done taken care of and then I move on.  And sometimes moving on to the next thing (Like selling our house right after our daughter was incredibly ill) might be a way of avoiding dealing with all the feelings and emotions one is bound to have after such a traumatic event.  Cause let’s be honest- who wants to take their downtime to “work out” all that tangled mess of feelings? So I am going to say that our house being on the market longer than I expected  (I had a bidding war, opening weekend sale in mind) was the Lord’s grace to me so I could begin to deal with my junk.
See the thing I have realized over the last few weeks is that even though I have grown into dealing with the fact my daughter has a rare, complicated, and incurable disease.  Seeing  the reality of just how sick she can get, and facing the fact that one day I may have to say goodbye to her while I remain on this earth is just a little more than I can even begin to process.  I have faced the grieving that has come with my expectations of my family and life being so very different from the reality of them.  But this- this is a whole new set of wounds, of disappointment, of anxieties and fears.  
I started reading a new book today.  Here is an expert from it.
Scars are easier to talk about than they are to show- with all the remembered feelings laid bare. And rarely do we see wounds that are in the process of healing. – Brene Brown
And so I haven’t blogged- because who wants to expose their gaping open wound?  Am I right?

But- I also realize I am not alone in these experiences. We all have open, gaping wounds.  They might be different than mine, but they are present.  And being vulnerable and open even in the hard stuff is important to me.  So there it is.  
I will leave you with this. A sweet picture of Emmaus "singing" as Adele blasted on my phone today. Girlfriend loves some Adele. 

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Thursday, June 2, 2016

Marked.

Part 1- Reflections 

I thought she was going to die. I had a conversation with mom my in a dimly lit Ronald McDonald room about how sick she really was and that was the first time I had spoken my fears aloud. Later- after she was intubated- but still getting sicker I picked up the first Laura Ingalls Wilder book- Little House in the Big Woods and started crying- hoping I could read it all to her before she died. I started reading it aloud to her that afternoon. 

We knew she was sick, she had been inpatient with pneumonia for five days without much improvement  and then the team of doctors finally pulled the trigger to have a chest tube put in on day six. She had a late afternoon procedure and was well enough before hand to go stroll the halls in the wagon, oxygen hooked up, and to visit the playroom.  And then she went down for her chest tube placement. I was so nervous before it- which is saying something. I don’t get nervous. I think maybe I was less nervous about her having brain surgery. I warned the surgeon, and the anesthesiologist that her platelets had been dropping and asked them to check them before starting.  The medical team she was on was fine, but they were a little to focused on pneumonia- and what pneumonia looks like in normal- non TS kids- and how pneumonia acts in these kids- and despite my mom instinct  and me repeatedly saying “Hey- I’m noticing this- or this- or this is how she typically responds- they made it very clear they didn’t want to “look for issues” (nor did I- but I thought we could at least address the issues that were presenting) 

I feel like I am in an odd place being both a pediatric nurse and Emmaus’ mom. It is a total blessing- but I also know too much. I feel kinda paranoid and crazy when it comes to her, afraid the doctors are saying things like “oh her mom is a nurse, so she's worried about everything” but honestly- my instinct hasn’t been wrong yet- so I guess I should just get over that. And it seems if it is rare, and unlikely, it probably isn’t that far off base for her. 

That night after her chest tube placement things got really bad. She had gone back up to a med-surg floor and she just got sicker and sicker. She was so white, and totally not alert. Her respiratory rate slowed, and she wasn’t even waking up when painful things were happening.  Honestly- when I think back on that evening it is a huge blur.  She was fine and we were just waiting for her to wake up from the sedation, eating a pizza- and then suddenly it was clear that she wasn’t waking up, and maybe it wasn’t because she was sleepy from sedation. Her C02 monitor was alarming non-stop, making Dan on edge. It was bad. I puked in the bathroom. I couldn’t stop assessing her. From head to toe I was going though everything I could think of over and over. I kept trying to stop thinking like a nurse to simply be her mom, but I knew things were moving to slowly- she was going downhill too quickly. Outwardly remaining calm inwardly losing my shit.  That night was rough- but the pain team doctor was amazing. Someone told me maybe she had once been a nurse? I literally thought she was an angel- that if I searched for her she might not truly exist. She does exist by the way. 

Finally we got her to the ICU. But even then, with the best physicians things kept getting worse- for days. At one point I researched low albumin in critically ill children and found a study done about how it increased the mortality rate. I stopped reading. 

Finally things started getting better. X-rays looked better, fevers reduced. And then came the med psychosis- ICU delirium. I think the fear in those long days was worse than the fear of her dying. Seeing her so scared. Terrified. So terrified it would cause her heart rate to sky rocket to over 200, for her muscles to become rigid and posture. These drugs- they are a powerful thing. And when your system reacts poorly to them it is intense. I told someone she was ‘out of her mind’ and I meant that literally. I have never seen her eyes so dark- so wild. 
Just yesterday she was scared of something and trembling. It took me back. Back to those long days and nights of fear. Of whispered pleads and prayers that her mind be protected. That she be would be calm and not feel alone. That she would not be scared or afraid.

Here we are almost a month after coming home. She is happy and basically back to normal. But for me- things are just different. I have been marked by this experience. Marked by truly fearing she might die. Marked by feeling no matter how loudly I voiced my concerns, waved my arms- they were overlooked- dismissed- I don’t know I have ever felt so powerless. Marked by knowing I gave her a med- choose a risky med for her in hopes it would giver her seizures freedom, that it would allow the words she knows to be spoken-that in turn made this sickness go from a common cold to a terrible pneumonia. There are occasionally times in life when there is a “before & after”- a true life changing event. And I feel that this was one. I am changed because of this illness we battled. And I am grateful-even though weary and war torn- we are all here together on the other side.




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Monday, April 25, 2016

Burning hearts

My current Jam https://www.youtube.com/watch?v=Q_cX0-wBoGs  (thanks JB)

Emmaus came into this world with a labor of love. A labor that was maybe my truest moments of communion with the Lord. A time where I knew the nearness of the Lord, and knew he heard and cared about my request. Where as her mother my body broke for the child I was carrying. With every contraction I allowed my body to submit to the process that was a new life entering the world. I pled with the Lord that night and into the next morning that she would be born healthy, that she would be spared from the burden of sickness we suspected was present in the very core of her genetic code.
Her name had been in my heart for a long time. I heard a sermon at church about the road to Emmaus. The idea behind the passage in Luke 24 is that after the resurrection Jesus walked with the disciples and they didn't recognize him. He spoke scriptures and truth to them, and then only after they left him did they realize it was him with them. They asked each other, “Were not our hearts burning within us while he talked with us on the road and opened the Scriptures to us?”
Dan and I were engaged the first time I brought up our hypothetical daughter Emmaus. He immediately said "hell-to-the-no" It's weird I get it. But then I just kept on it and he grew to love it too. And it was actually him when we first found out about tuberous sclerosis that said "well, her name is clearly Emmaus!" We knew along the road that we wouldn't always know the Lord was walking with us. But looking back we would surely be able to see he was there all the time.
This girl. She has increased my faith. She has caused my heart to burn for the Lord. To know that this world is temporary, broken, and full of sickness and death. But that this world is not my home. I was created for the world that is coming.
This week I have had to submit to the Lord that Emmaus is his child. I have once again had to say "Lord I trust you, and will submit to your will for her-for me." Emmaus in my life is a spiritual catalyst. She makes me seek the Lord, because there is no way for me to try to control her, or the outcome of her life. I cannot sit in fear over her life. Because I have no control over her life. This doesn't mean I haven't been afraid. Just that I cannot live in a place of fear.

Anyway- these are just my sleep deprived- ICU mom ramblings. 
I won't claim my Emmaus is changing others, or making their hearts burn for the Lord. But she has changed me. And that is enough. 



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Thursday, April 21, 2016

God is Good all the time.

First. This is my current Jam- You should give it a listen. The whole CD is great. But man- this song.
https://www.youtube.com/watch?v=nYP8b7p3I64

I could write all about the nitty gritty details of the happenings in this ICU room for the last several days- but instead I will just say Emmaus isn't doing well, and we covet your prayers for her, and us.
I don't know that we have ever faced such a trial. Everything about this sickness has tested and tried us. It has been harder than brain surgery, or endless seizures, developmental delays and autism. And at least for today I don't even have encouraging news. But I did just want to write out a thought real quickly.
Even through this. In crazy times like this. When every day for the last three we have gotten worse and worse new about Emmaus' health, even when she is not getting better, even as I sit in her ICU room where she lay pale, intubated, and sedated- I just want to make it clear that God is Good ALL THE TIME.
This sickness, this pain, her underlying tuberous sclerosis, this was not God's plan. These things are a result of brokenness, of sin being a part of this world. And while it is hard- really hard to live in the midst of this- God has taken care of this too. He has already sent his son, he has already paid the ultimate price to take care of this brokenness.
As her mom I have so many emotions. So many fears, and unknowns. The one things I do know I have a God Father that has not forgotten about me. He has not forgotten about Emmaus.

So- I know this is a bit preachy for my normal post. But this is what is on my heart today- so I figured I would share it.

"For God did not give us a spirit of timidity or fear, but He has given us a spirit of power and of love and of sound judgement and personal discipline abilities that result in a calm, well-balanced mind and self control"


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