My American Nightmare: A chronic illness healthcare tale

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.

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