Sweet Summer

The slow pace of summer days isn’t lost on me. In this “chronic life” we live “slow” is not something our schedule usually allows for. And still my “slow” probably would be super overwhelming to most. The TS walk planning, fundraising, appointment follow ups, seizures action plans, IEP meetings, those are just a part of my typical life. So while they are still present, opening up my schedule, intentionally saying no, planning ahead, leaving space for downtime all of those things have allowed for a bit of room to do fun things.

I never went berry picking as a child. I don’t even love blueberries. But it is one of my summer-must do activities with my girls.  The drive to The Berry Patch is enough to let my soul relax. It gets me dreaming of country life.

Yesterday morning we finally made it out. I have to admit, it felt a little weird not to be EXTREMELY pregnant or have a crawling babe picking berries off the ground, peaking in  and out of the bushes. And at the same time it was so fun to have my girls flit around from bush to bush.

Shiloh hastily picking, getting as many green as blue, spending her time comparing who had the most in their bucket, while congratulating the winner, and praising her sister and herself for a job well done.

Lennon patiently looking and picking only the true blue ones. She maybe only picked 25 total, but I guarantee her’s were the sweetest, most ripe of them all.

 

No trip anywhere is complete without an almost-two-year-old meltdown.

But even that wasn’t rushed, or hushed, but just gotten over in time and with the promise of THE BEST cinnamon blueberry muffins ever to be had.

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A morning spent with zero expectations, no rush, and just sweet time with these two- it was what summer dreams are made of.

I feel the squeeze of summer’s end, new routines, and my ever growing girls pressing in.  So I’m taking time to savor summer’s relaxed approach, their littleness, the fading baby chubb and toddler sentence structure while I have it here.

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*It may seem like Shiloh is bothered by the sun, however- after I snapped this, she asked to see it so she could see the “HEWARIOUS” face she made. Kid cracks me up*

 

My American Nightmare: A chronic illness healthcare tale

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The American Dream is a national ethos of the United States, the set of ideals (democracy, rights, liberty, opportunity and equality) in which freedom includes the opportunity for prosperity and success, as well as an upward social mobility for the family and children, achieved through hard work in a society with few barriers. In the definition of the American Dream by James Truslow Adams in 1931, “life should be better and richer and fuller for everyone, with opportunity for each according to ability or achievement” regardless of social class or circumstances of birth.

I made my husband come home from work. I am not in a good place. I mentally feel unstable to care for our children and provide what they need in a loving, calm way.
For months I have been reaching out for help. And for months we have been jumping through hoops. Both with state supports and private supports.

I’m not quite sure how we got here. But I think I can honestly call it the “American Nightmare”.
My husband and I are hardworking, well educated middle class citizens. I am not saying that out of a place of pride, just to set up the reality of our circumstance. We both work outside our homes. We have taken the step to be extremely financially prepared and responsible. We have no debt besides our home, which is minimal, we buy cars in cash, and that isn’t because we just are so wealthy, but because we have worked extra shifts, and live on tight budgets and saved to get there.

Our first of three daughters was born with a rare, randomly occurring genetic disease. Nothing we could have prevented, predicted, or caused. In her six years of life we have paid around 45,000 on medical deductibles/out of pocket max costs all of which were primarily for her (This does not include our estimated 36,000 in monthly premiums in that time).
We have had some help along the way from friends and family who had extra and gave to us generously, especially in times of need. We have never been in need. We have never been hungry. And that is a great gift in our life.

In the last 18 months our daughter’s health has declined. A disease that isn’t necessarily progressive, has very much been progressive for her. 15 months ago a pneumonia almost took her life. The year following she had illness, upon illness, never with the same severity, but also with lots of complications, missed work, and sick days. This May another fierce pneumonia developed and luckily due to extremely aggressive and proactive medical care she was able to avoid an intubation. However, we came home with a huge process to care for her daily. Quickly upon returning home I realized we need help.

Never in her six years have I felt like we needed help at home. My husband and I are very capable. I am as luck would have it a pediatric nurse by trade. But after this illness I realized it is just too much. I should not have to be her private nurse. I am her mom. And while all mothering requires some nursing care, it shouldn’t require SKILLED nursing care.

And here comes the American Nightmare.
We need help, but it seems are unable to get it. I applied for help from the state through the department of disabilities back in February. Our “promised” respite care for July still have not been approved. We are waiting for a medicaid denial, a “30 day process” which I am told actually takes months, so we can apply for a medicaid waiver. This was also started months ago.
I reached out to our private insurance to try to get home nursing care to be told we had been approved, and then to be sent through a incredibly ridiculous ring of hoops that today it looks like we won’t be approved. We will appeal.

I am at a loss.

When I type all of this it might sound like I resent the work and cost involved with being the mom to a child with the type of needs my daughter has. And that couldn’t be further from the truth. I love being her mom. She is fun. She is loving, and she is also challenging. She stretches and causes me to grow. However, I also love mothering my other girls. And I cannot be a healthy mother to them all, a full time private duty nurse for our medically complex daughter, a nurse who works at an actual hospital (to provide our private insurance), and take care of the “little details” of life.

Let me just give you a few “little details” of today.

 

I have talked to our case manager back and forth to provide a run down for exactly why she needs home nursing. (This is a process that started three weeks ago and I am still dealing with).
During the time I tried to write out our “daily needs” I also attended to three kids. One of which I pulled out of the bath tub twice, reclothed once, took potty twice, found playing in the sink twice, in the toilet once, pulling on her NG tube about 45 times, I got her down from the top of the table, took her sisters cups away from her three times, and provided a snack. This literally may have been a total of 45 minutes. And when I say all of this happened. I mean- I was watching her, fairly well. But she’s quick and she’s determined. ANY distraction provides her opportunity. I honestly have no idea what the other two were doing. They were safe, I was listening for them, but I was focused on the one who needs constant care and dealing with our insurance.

I then moved onto getting her meds that I reordered last Tuesday, that didn’t arrive in full when I picked them up last Friday, and then they still didn’t have in stock on Monday evening. This is completely unacceptable, and left us without this morning’s dose. So I woke up with a high priority issue. In calling around GUESS WHAT it still didn’t arrive. And the pharmacist did us a “solid” by transferring it, and reversing the fact we picked them up in june and making it look like we hadn’t. So our insurance plan starts over in July. Meaning a med that was “FREE” since we had met our $1600 medication deductible for her now cost us $150. I asked her to “undo the reversal” and she said it is illegal to back-date prescriptions. UHHHH ONES WE GOT IN JUNE?!?! HOW IS IT LEGAL FOR YOU TO REVERSE THE FACT WE DID PICK IT UP!!!!!!!!

You guys. This is real. All of this. And it isn’t uncommon. I spend hours and hours a week dealing with this stuff.

We have friends and family that want to help. But what do I divvy out? Oh, can you pick up fighting for this state program, harass medicaid a little bit more to get our denial so we can move on and wait on another list for services? Can you call our insurance and figure out the appeals process for when this gets officially denied? Can you mother my two healthy children? Can you provide nursing services for Emmaus? Can someone follow up on the unset IEP for next school year? Fix her talking device, which is broken AGAIN?

I consider myself a pretty high capacity person. Someone who tries to be healthy, to be prepared, and who has some support and is able to cope pretty well. It is alarming that I feel this broken, that my attempts to get help when we need it have been such a fight, and have so far gone unanswered. I know I am not the only mom of a medically complex child fighting this battle.

This post isn’t meant to be political, or pitiful. But to really say this system, both public and private is broken. It feels helpless to have almost no control, to be fully relying on these broken systems because of something that was just a chance happening in life. The funny thing is that that in asking for help, trying to be preventative, the systems fail, but I’m sure our insurance covers psychiatric care for when my caregiver fatigue/mental breakdown is just too much to handle. Welcome to my American Nightmare.

Gospel Parenting

I missed the memo that becoming a parent would 1. be a fiery pit of imposed humility and deep self-reflection. And 2. I would become a servant. I thought it would be playing with my kids, fun activities, some cooking and cleaning, but that my kids would naturally have a healthy fear of me and thus pretty easily fall in line when I calmly corrected their behaviors. I also imagined a lot less sickness. And poop. There was definitely less poop in my naive scenario.

Are you laughing yet?

You guys. I am bossy. I like to be in charge. And yet, that is just not the reality I find myself in.
I spend most of my days reminding my tiny humans to say “please” before they make their next demand.
And you know what? My kids do NOT respond well to me just telling them what they should and shouldn’t do all the time. They listen, kind of, but I just don’t see the type of change I want. It’s basically  “in one ear and out the other”. But you know what they do pick up on? ANYTHING I do wrong. When I lose my temper. When I am angry, or gasp- when I cuss.

Recently Shiloh, mid meltdown, stomped down the hall yelling “I don’t even care dammit”. YEP. I am killing it with this whole parenting gig.

So I’ve decided to change things up a bit. If they pick up so easily on my bad behavior, could the same be true for my good?

I keep thinking about how Jesus, at the last supper, cleans his disciples feet. He is GOD. mmmkay. GOD. And He served them by doing the lowliest task. I hate feet, so the yucky servitude of this task isn’t lost on me.

{Even if you don’t believe in God- Even if Jesus’ isn’t your Jam.   Historically speaking, He was a guy who did relationship pretty darn well and was a natural leader. And anyone who impressively  executes a skill set, I feel like it is    worth looking into how they accomplish their success. So maybe just hang with me a fewmore minutes if you aren’t bored.}

From John 13.
When he had finished washing their feet, he put on his clothes and returned to his place. “Do you understand what I have done for you?” he asked them.  “You call me ‘Teacher’ and ‘Lord,’ and rightly so, for that is what I am.  Now that I, your Lord and Teacher, have washed your feet, you also should wash one another’s feet.  I have set you an example that you should do as I have done for you.  Very truly I tell you, no servant is greater than his master, nor is a messenger greater than the one who sent him.  Now that you know these things, you will be blessed if you do them.

How transformational might my mothering journey become if I follow this model of serving my children, of believing just because I am older, more experienced I am not necessarily “greater”? How might it change if I take the time to model thankfulness, patience, and apologizing to them when I royally mess up (cause that happens daily)

Jesus had high standards. But he didn’t go around chastising his disciples because they were doing it all wrong. And man did they get it wrong. He didn’t micro-manage his was into leadership of them. He didn’t yell at them when they didn’t listen.

He met them where they were. And invited them to follow him.
Gently guiding them He assertively, but lovingly invited them deeper into relationship with him. He didn’t demand their respect to validate his authority in their lives.
Patiently He invited them to step into relationship, over and over again.

Gospel parenting y’all.
(or maybe just intentionally leading by example)

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Instability, fear, shame come between people when the relationship is broken. And when you are parenting tiny humans the breaking of relationship comes about 100 times a day! We live in a society where shame is such a motivating factor. Where trust has been lost, and fear rules. I refuse to let those things be the prominent experiences for my girls, at least in my interactions with them.
With broken relationship, I have found it vitally importance to reach out to the “guilty party” to invite them back into the relationship. Jesus Modeled this well too. When Peter his nearest and dearest totally bailed on him during a crucial time- claimed to not even know him! And guess what- Jesus didn’t wait around for Peter to come and make things right, Jesus took the LEAD and invited him into relationship once again.

It is so easy for me as their mom to just see the fit being thrown, the bitter words escaping their lips, or the disobedience and punish/correct those things. But they aren’t the PROBLEM!!! They are a symptom of the problem. The root problems I have too- but just react too differently.

What would happen if instead I can have the ability to see their disapointment in a situation, recognize when they are tired, hungry, jealous, their lives feel out of rhythm, or they had too much freedom. And then give them tools to better handle those things.
*I’m not saying the tool won’t be alone time in their room to figure it out (or another punishment). But isn’t that a valuable lesson in itself? To learn to retreat when you feel out of control, step back and figure out what is happening to your emotions?

What if I took on the role of serving my children willingly, dying to my natural tendencies of trying to run the show?

Humbling. Parenting is Humbling. These tiny human sponge children repeat what is modeled to them. And there will be so many things influencing them before they are on their own. I want to make sure what I am modeling speaks loudly.

Anyway- I’m gonna give Gospel Parenting try. I’m sure it will be a humbling try at best.

 

Golden bonds of brokenness

I keep waiting for it to get easier.  For the sting of this disease to ease.

My three year old Shiloh is such a sensitive soul. She feels things deeply. She will skin her knee and just cry so hard about it. (for a day. mmmkay?) And then in the days to come will continue to tell me it hurts, she will wince, guard it, and even weeks later she will point out the mostly healed spot and recount the pain of it (And try to con me into giving her another princess band-aid). I mostly ignore her- count it as drama. Because let’s be honest it partially is, but it is also how she is affected by pain. It really bothers her. And then with the next wound it is the same. Over and over again, she doesn’t seem to get much tougher.

And that is about how I feel about Emmaus having Tuberous Sclerosis. There has been so much grieving with this disease. We have gone from Seizures, to brain surgery, to therapies, to seizures freedom and onset again. Autism joined us, and then the sicknesses. The viral illnesses, the mono, the pneumonias. We have joined the medically complex and ‘somewhat’ fragile club.  And I just keep waiting for the pain to stop coming.  Sometimes I Feel like I am the ‘about healed’, hardly visible skinned knee. (You know when the scab is gone, but the new skin is just a darker shade? Not obvious to those around.) But when I think I should be feeling better, a remembering-pain from the depths of my soul comes rushing forward.

In some ways this hospitalization has felt somewhat therapeutic. Last year when she was sick I felt so helpless and like her care was extremely mis-managed until we got to the ICU. And this year I shared our experience, my expertise of my daughter, and her medical team has been amazing. Pro-active. Kind.

And in other ways it feels hard. Heavy. It makes me realize this might be our new normal. Today I cried thankful tears we unexpectantly got pregnant with Lennon when we did. Because shortly after she was born these hospitalizing illnesses started. And I’m confident we wouldn’t be trying to grow our family in the midst of this.  I cried because Friday is Emmaus’ preschool graduation and she will be in the hospital.  I cried because we spent mothers’ day here.  I cried because trying to wrap my mind about fluxing in and out of this type of acute crisis, on top of our day chronic mini-crisis is TEAR WORTHY. 

I find myself waiting to settle into this being my life. To be content with this reality.  In some ways I have found peace with a lot of things. And in so many other ways the core of my being opposes these struggles head on. It makes me feel conflicted.  I want to walk this out peacefully. To find Joy in the crevices of my broken heart. To let life and love and experience pour out of its cracked places. AND IT IS SOOOO HARD TO ACTUALLY DO THAT!!

Time and time again I come back to this. If God cares about me even half as much as I care about Emmaus. If he feels the pain of the deep wounds like I feel hers. If he mourns with me like I mourn with her. I am not even slightly alone in my pain.  Today standing in the middle of a radiology room, after a failed swallow study, I just bawled for my girl. For the losses in her life. For the struggle. Holding her chest to chest, her lanky legs passing my knees. Her still crying from the swallow study, me crying from it’s result. But neither one of us alone. Tears falling from my face I gently set her in her chair, buckled her up, wiped her face, and kissed her tear stained cheek. Still crying  I stood tall to talk to the radiologist and therapist about “whats next”.  And the nurse with us (that I knew, but not super well-) pulled me in so tight. Giving space for my grief by acknowledging it. Not trying to comfort it, just stepping in and being present in the midst of the pain.

There is no shame in broken places. Brokenness is the thread that connects us all. There is holiness in standing with each other in these moments. 

Recently a friend shared with me a Japanese art from called Kintsugi. It is where value is still seen in brokenness. And broken pottery is fixed with a gold lacquer. kintsugi-crack-method-1

The bowl is not useless because of it’s brokenness. Instead it’s brokenness is highlighted. Seen as a part of it’s history, part of it’s beauty.

Today I was pitiful. My thoughts were full of “this isn’t fair” and I spent time stacking all the things in my head that have been taken from Emmaus, taken from me, from our family because of this disease.  And while I must have grace for myself in this space, I also cannot remain here. Because for me I feel the bitterness rise quickly.

May these broken places in my life not shatter me. Or render me useless. But instead become a golden bond of character. Of strength. And beauty.

Peace and love to you dear friends.

Love, La

The Jungle

Pulled from my blogger site written August 2016 

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.