Friends talking over coffee.

Parenting a child who is medically complex can be an isolating experience. I’ve noticed that many friends want to understand my life, but the rare times we see each other, I would rather talk about something other than the hard things. You may also have a friend in your life who has a medically complex child. I polled some of my friends parenting medically complex kids and these were the top 5 things I kept hearing over and over again. I hope this gives a small glimpse into our lives and the things we may not talk about.

1. I’m afraid that my child will die too soon. But I am more afraid for my child’s well-being after I’m gone.

This is a complex feeling that so many of us worry about. I am my child’s advocate; I know them better than anyone else. It’s hard to trust other people to care for my child, because I feel no one will love them as I do. I am afraid their fragile health will end their life before I am ready to say goodbye. But who will care for them, protect them, advocate for them when I am gone? Yes, it’s all complicated and if I think about it too much, I will feel incredibly anxious.

2. I will say no to most invites, but not because I don’t want to come. Please, keep inviting me.

I used to say yes to almost every invitation. I could get ready in 15 minutes (well, maybe 30), tell the kids to get their coats and we would load up in the car. Now, it takes lots of planning, arranging for care, researching accessibility and weighing if we can really do it. If we are brave enough to say yes, would everyone understand if we cancel at the last minute if things just don’t work out? I know it’s hard to have a friend like this, but just getting an invite means the world to me. It tells me you haven’t given up on us.

3. I may make this look easy, but it’s not.

When we go out, we often put on a brave, happy face and just do life. We appreciate the times we can do “regular” things so you won’t see how challenging the day may have been. Our life is far from miserable, but it can be hard.

4. I want to know about your life, too.

So often, my child is a topic of conversation and it’s good to be able to talk about the good, the hard and the everyday. But I also want to know about your life. I want to celebrate your children’s accomplishments, cry with you about the hard times you’re facing and lament about the daily grind. That’s the friendship I crave when we are in the hospital or stuck at home during flu season.

5. I wouldn’t trade this life for anything; my child is my world.

I’ve said that my life is hard, but please know I wouldn’t change a thing. Well, I wouldn’t want my child to be sick and in pain, but what I mean is that you don’t have to feel sorry for me. I may get angry at the unfairness of some things we have to deal with, but my child is amazing, resilient, brave and strong. That gives me strength and hope each day.

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As parents who have a child with complex needs, we go through stages after the realization that something is different with our child. We went through stages of grief, self-blame, depression. There were some dark times, which I now look back on as missed opportunities to see the fullness of what our son brought to our lives. There is no hand holding by anyone, no one telling you this is going to be a journey that teaches you something every day. No one tells you that each day will bring a gift, whether it’s in the form of a difficult barrier, or in the form of pure joy on your child’s face. Every. Single. Day. is a chance to learn more about yourself as a person and as a parent. No one tells us that this journey could wear you down, but only if you allow it to.

Our son has taught us many valuable lessons over the last eight years, too many to count. I can honestly say this young man, my boy, is the guide in our life’s journey. Without him, we would not be who we are. He is here to tell us how to be. How to be with ourselves, how to be to others, how to root ourselves in the moment and when to slow down. He is the strongest and most unique person we know.

He was born with a gift. The gift of teaching and professing to others about love, joy, strength and self-reflection, without speaking a single word.

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Stock photo by Keith Brofsky

I’ve been getting my share of lessons in acceptance lately. I choose to see it this way rather than as a run of bad luck because without fail I am more grateful, more clear-seeing, and more resourced on the other side of these stretches. When it’s happening I obviously just want it all to go away.

It started a few months ago when my daughter Lemon caught a stomach bug. It hit her hard, but I thought after a few days of gut rest she’d be back to her normal cheery self. Instead her entire system unravelled, and she lost the ability to digest anything. She survived on broth for another month while we waited for this monster to run its course. It was a lot of waiting in the dark.

When Lemon gets sick no one knows what’s happening. This time after lab work ruled out a few common bacteria and parasites, her pediatrician told me she would defer to me since I was the expert on my daughter’s health. I sat with these words for a minute unsure if that was actually a good thing in this case.

There really isn’t a net to catch this child when she falls. I hold her on the way down, and we fall together.

It has me thinking about how we all find ourselves in the depths at one time or another and have to find a way through. Holding healing for yourself or for someone you love is a commitment to staying present with fear, exhaustion, and every joyous gain. It’s allowing yourself to be right where you are with the tools you’ve got.

And rock bottom serves its purpose in that it’s a place to take inventory on what is and isn’t working and to resource for the next steps. The following ideas are some of my most tried-and-true methods for navigating the deep and making my way back home again. Hopefully they will help you too the next time life hits the fan in your house.

Feel your feet connecting with the earth. This is the most immediate kind of grounding work and can be done anywhere, anytime. There is only so much freaking out you can do while your focus is on your feet.

Practice gratitude about anything and everything. Say it out loud. This is life-changing work because it makes acceptance of what is feel bigger.

Ask for what you need (or want) from your partner, spouse, friend, and extended family. Don’t expect them to know until you verbalize it.

Explore more forms of support than you think you need (support groups, therapy, friend time, exercise). 

Connect with resources that align with your values – make sure it’s a right fit. If it isn’t, allow yourself to explore other options.

Create a space to be with yourself. Choose a place where you feel connected with something bigger than you. Church, yoga, a meditation circle, standing in the forest, or immersing in water.

Some days collapse is a necessary and logical response to what life brings. Go there and find the gem of stillness buried inside. When you feel ready get up and start again.

“Sorrow prepares you for joy. It violently sweeps everything out of your house, so that new joy can find space to enter. It shakes the yellow leaves from the bough of your heart, so that fresh green leaves can grow in their place. It pulls up the rotten roots, so that new roots hidden beneath have room to grow. Whatever sorrow shakes from your heart, far better things will take their place.”  — Rumi

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Stock photo by m-imagephotography

A year ago, my life was very different than from what it has become, and it’s drastically different from two years ago. I never would have imagined I’d be where I am right now in my life. I foresaw my life being very different in 2016 than what it presently is. And yet I’m full of gratitude and amazement as I struggle to believe my present life is reality.

To fill you in, a lot has transpired in the last 24 months:

• I decided not to have any children because of my health and familial adenomatous polyposis (FAP).

• My husband was diagnosed and hospitalized with diabetes.

• My marriage began to fall apart.

• I entered a bout of extremely severe depression.

• I was hospitalized for the first time in seven years.

• I developed increased chronic pain and started having chronic nausea.

• I went on a dream family vacation to Alaska (highly recommended by the way).

• One of my very beloved great uncles died at 99 years old.

• Estrangement from some very dear friends and family members.

• Marital separation.

• Moved back home with my parents.

• Divorced.

• Bought a house.

• Became independent once again.

Not everything that has happened in the last two years has been a hardship. In spite of very difficult, trying situations throughout the last two years, every situation has held life lessons for me and has helped me grow as an individual.

I psychologically survived situations I never imagined I would face and wasn’t sure I would survive at the time of their occurrence. And yet, with each hurdle, I became stronger and fiercer. I never saw myself as a survivor or as a brave person before in spite of surviving seven surgeriesnear-death experiences and the cancer that was developing in my body. I’ve lived through PTSD, suicidal ideation and severe depression. I’ve survived the physical and emotional loss of many. I survived. I learned I am strong, and after facing physical and psychological challenges, I can survive anything.

It’s true we don’t realize how strong we are until we have no other choice. Feeling on the verge of a mental breakdown for months on end last year, my mind somehow held onto the smallest amounts of hope and strength to keep me alive to fight another day.

And now, I’m stronger than ever before. Now, I’m prepared to fight whatever future fights may be in store for me. I know I’ve survived the worst psychological challenges I’ve ever encountered, and it’s only up from here. Even my bad days aren’t my worst days because those are behind me.

I’ve harnessed my inner strength that for far too long I didn’t know existed. It’s easy to ignore our inner strength. We tend to minimize our feats of mental strength. We become accustomed to survival mode without acknowledgement of what it actually takes to survive. We get caught up in surviving day to day without relishing in the fact that we are surviving.

Let us stop cheating ourselves. Let us honor our strength and harness it. When we bear witness to our strength, we honor ourselves, our survival and our life.

Follow this journey on Life’s a Polyp.

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If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255. You can reach the Crisis Text Line by texting “START” to 741-741.

Lead photo source: Thinkstock Images

9 a.m. I call the hospital from work to get a morning update. Things are OK.

11:26 a.m. The nurse calls to let me know they are going to put in a femoral and arterial lines.

This is not a good update.

11:31 a.m. I tell my husband (who was planning to leave work at noon) to call me.

I leave work, speeding like a bat out of hell.

I get to the hospital, and the situation is quickly deteriorating. Alyssa is in a sterile environment, two attending cardiologists are working on her and I’m told her blood pressure is too low. She’s in a really bad spot.

I make eye contact with one of the cardiologists. We know everyone on this unit. His look tells me all I need to know.

I ask the cardiology fellow if Alyssa is the most critical case in the unit.

He says it’s never a good sign when there are two attending cardiologists at her bedside.

I tell him that doesn’t make me feel any better.

I ask, “Is blood pressure a heart thing or a lungs thing?”

She has issues with both, and the vascular system is so closely intertwined.

A nurse introduces herself to me. She is interdisciplinary.

She is here because Alyssa might not make it, and she would help facilitate the calls/business that comes at that point. She doesn’t say this to me, but this is fact.

12:08 p.m. I tell my husband things are not going well. “If you have to get a police escort, do it.”

I send him the sheriff department numbers for the two counties he’ll drive through.

12:20 p.m. I text my parents. “She is not trending in the right direction.”

Nurse: “Do you need a chair?”

“I’m fine. I sit all day.”

I’m standing in 4-inch heels perfectly still as close as I’m able to get. My feet hurt, but if I sit I can’t see everything that’s happening.

Nurses and doctors are shuffling around everywhere as they are struggling to get the IV access they need in her groin area.

They’re using an ultrasound to guide the needle, but it’s not a quick process. Alyssa is a notoriously difficult stick.

There’s blood everywhere, a heap of blood-soaked gauze on a table they collected while trying to get IV access.

She’s covered in white fabric so only the areas they are working on are exposed.

The interdisciplinary nurse provides a narrative for everything they are doing and what’s happening. This is extremely helpful. Any word I don’t know, or drug I am unfamiliar with is explained.

Nurse: “If you don’t want to watch this we can sit in another room.”

I have seen her intubated in an emergency situation twice.

I can’t leave her.

They keep giving her bolus injections of a drug that increases blood pressure.

Her pressure spikes, then drops.

Nurse: “Do you need to sit down?”

“I’m fine.”

They continue to repeat doses of the blood pressure med more times than I can count. We ask if there’s a limit on this medication. There doesn’t seem to be, but we also can’t do this forever.

I start considering who I would have this nurse call and in what order. Do I give her my phone?

They add high alert medications. She’s not responding to them.

They add steroids, they change up her antibiotics, they replace nutrients like calcium and potassium chloride. Pharmacy is consulting with the cardiologists as they continue to add medications.

I’m watching the numbers.

Heart rate, oxygen, blood pressure, temp.

She’s not going in the right direction.

There’s nothing I can do.

The attending cardiologist comes over to talk to us. They are actually really surprised at how well her heart is performing. It doesn’t reflect the blood pressure. It might be the only thing helping right now.

The interdisciplinary nurse tells me they’ve added all of the high alert blood pressure meds they can. There is nothing else.

Me: “Are you telling me we could lose her today?”

Nurse: “Yes.”

1:08 p.m. I text my parents. “We may lose her today. There is nothing after the meds she’s on if she can’t compensate on her own.”

The pediatric surgery comes to consult. Alyssa is exhibiting signs of septic shock and acidosis, and they are trying to determine the cause. Big, scary words are thrown around. She’s not stable enough to have a procedure that can’t happen at the bedside.

The attending cardiologist is putting the surgeon through the ringer. They are going through every possible option of diagnosing what the issue could be without causing additional risks for Alyssa.

There aren’t any options. If the acidity of her blood doesn’t come down we’re going to be in a really dangerous spot.

Other nurses from the unit are putting together a new pole and assembling all of her drips so it’s tidy.

They are preparing a blood transfusion. Her 16th or 17th. I’ve lost count.

At this point the interdisciplinary nurse makes it clear we need to start considering at what point we would like to stop intervention.

She gives us the explanation of what would happen. CPR compressions in 2-minute intervals and she would be shocked after that. If we chose an alternate route they would get her situated in our arms.

My husband and I have two different end points.

I’m still standing. My vision stars to turn black around the edges.

Me: “I think I’m going to throw up.”

(Or faint.)

Trash cans appear out of everywhere.

Nurse: “Do you want to sit down?”

Me: “I think I should.”

They bring me one of the pink buckets you bathe babies in.

I still feel like I’m going to throw up.

How do I make this decision?

I’m looking at Alyssa through all the chaos. I hope she’s not aware. I hope she won’t remember any of this.

A doctor comes over and also asks us to consider at what point we want to stop intervention.

It’s in the form of “Obviously we’re doing everything we can to get her stabilized, but…”

I can tell from the monitor that this is serious. All I can do is cry into a tissue.

I have to pee. I’ve had to pee since I got here. I can’t leave her. This has been the fastest and slowest few hours of my life.

I tell my husband we’ll go with his plan.

The interdisciplinary nurse tells us we can change our minds even after they’ve started something if it comes to that.

2:01 p.m. I text my parents. We’re not at that point yet, but we have made the decision for when we would like to stop intervention.

X-rays and echocardiograms are done and read in real time.

The two attending cardiologist are finally done working on her. They move us to different chairs closer to her bed.

A nurse tells us we can touch her/kiss her, etc.

They are going to draw a blood gas in 10 minutes. If I want to get near her semi-uninterrupted, this is my opportunity.

I’ve had this feeling before. It’s the I-don’t-want-to-go-near-her feeling. She has something attached to every appendage it seems. I can’t hold her.

We’ve spent more than six non-consecutive months in the hospital. She’s been airlifted three times. She’s been on a ventilator multiple times. But today is the first time they’ve told me she might not make it. So yes, I’ll make my way over, but in my own time.

I cry as I try to compose myself enough to get to that point.

I grab her hand. She has so many poke marks from needles from days of getting labs. Her wrist is bleeding.

I wipe fresh blood on her sheets, which just adds to a few spots already there.

Me: “She’s bleeding out of one of her poke holes.”

A nurse promptly comes over with gauze and tape.

There is no privacy in an ICU.

I want to be alone.

I want to sing a song she likes to her.

I really just want to be home watching a cartoon with her.

I assumed death would be a quick and painless thing. A flatline. Like TV shows I guess. Instead we’re waiting on numbers to change, which will take hours to determine.

Her blood pressure is not going up. The interdisciplinary nurse tells me eventually her heart will not be able to maintain the way it has been if she can’t get it up.

I ask what the timetable will be. They are telling me about additional tests we will be running at 9 p.m. That’s seven hours from now.

I don’t want to feel a false sense of security.

And then, a glimmer of hope: the attending cardiologist says, “Is it my imagination or is she maintaining blood pressure for longer periods of time after each bolus?”

A nurse says, “It’s not your imagination” and gives her the timetable.

We wait.

Her liver and kidneys have taken a huge hit due to the amount of intervention required to get her stable.

Her lactate is coming down by tenths. But, it is coming down.

Alyssa doesn’t like to be rushed. Which makes emergencies that much more stressful.

Twenty-two hours later it’s morning rounds. Alyssa is stable but critical.

I ask if we’re first. We’re not, which means we are no longer the most critical.

The same cardiologist I made eye contact with yesterday morning says, “I’m glad we’re talking about all this today, and not what we thought we may have been talking about yesterday.”

I couldn’t agree more.

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On Monday, the Obama administration confirmed reports that premiums for plans purchased under the Affordable Care Act, or, as it’s more commonly known, Obamacare, would increase by double digits in 2017.

Data provided by the administration shows midlevel plans will increase by an average of 25 percent in most states. And, with insurers like UnitedHealth, Humana and Aetna leaving the marketplace or scaling back their offerings, around one in five people using the marketplaces will have only one insurer to choose from. This limited choice of insurers could force those who manage chronic conditions and utilize marketplace plans to have to choose new doctors or try new medications.

Since the Affordable Care Act went into effect, more than 20 million Americans have been able to get health insurance. Of those using the health insurance marketplaces, many will not feel the effect of these price increases due to subsidies given out by the federal government to make premiums more affordable.

“Administration officials are stressing that subsidies provided under the law, which are designed to rise alongside premiums, will insulate most customers from sticker shock,” the Associated Press reported. “They add that consumers who are willing to switch to cheaper plans will still be able to find bargains.”

Though healthcare has not been discussed much this election, the next president will likely decide the fate of the Affordable Care Act. Should the election result in a Donald Trump presidency or a Republican majority in Congress, it could spell the end for Obamacare. Both Trump and the Republican party are calling for a full repeal of Obamacare. Democrats support keeping Obamacare, with Hillary Clinton proposing lowering the requirements for financial assistance and improving subsidies.

When the Affordable Care Act was passed in 2010, it did more than set up a marketplace for uninsured people to buy health insurance, it also created a number of healthcare provisions meant to protect Americans. Before Obamacare, insurers could deny you coverage based on any pre-existing conditions you may have, making it difficult for people with chronic illnesses to get insurance if their plans lapsed in between employers. Given that most people will experience a health problem during their lives, ensuring everyone has access to health insurance means more.

The act also allows young people, those under the age of 26, to stay on their parent’s insurance plan. Before that, children were only able to stay on their parent’s health insurance until they were 19 or 23, if they were a full-time student. Obamacare also makes it easier for millions of people to qualify for and enroll in Medicaid, allowing people who haven’t been able to afford their own coverage to enroll in a government-based program.

Image via Thinkstock.

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