What do we choose?

 My son was admitted to the children's hospital a few days ago, three days ago to be exact but it feels like it's been a lifetime. We had to come in because of some increasing breathing issues. These issues only present during sleep. We have come to the hospital before for the same issue, maybe a year and a half ago. During that admission things went from bad to worse as my son ended up in status epilepticus while his breathing struggles were being investigated. Things happened, he was given medications and sedated until his brain was slowed down enough that the seizures stopped. We were lucky, there appeared to be no permanent damage from the seizures. The neurologist adjusted some medications, and the vagus nerve stimulator and made sure we were recovered enough that in terms of a seizure perspective we were safe. We also saw a team of respiratory doctors, the ran tests and ordered a sleep study. The respiratory doctors saw evidence of apneas, hypopneas, and desaturations however they believed it was being caused by the vagus nerve stimulator and therefore it was up to neurology to fix things. Neurology did a few more adjusting, lowering medications, changing treatment plans, and watching. 

Meanwhile we tried to just keep going and adjust to our "new normal." This is something we have had to do a lot as a family, with a palliative condition there is no cure, only symptom management. So as our son goes through periods of decline we often are given a new baseline for him and a "new normal" way of life.

This time our new normal included trying to find a way to make sure our son survived each night while the we fought to be heard, fought to get help. My husband and I spent so many sleepless nights listening for our baby's breathing, watching for his chest to rise and repositioning him when he started gasping for air. We tried to find a monitor that would alarm if his oxygen levels dropped, we bought four, yep FOUR different monitors, the all advertised oxygen saturation monitoring and alarms and yet the alarms were for blood pressure or heart rate. We found two monitors that were approved for overnight use (as opposed to spot check monitoring), neither of them alarmed - they only vibrated.

This struggle went on and on, we talked to our doctors. Every single one of them suggested another sleep study and a consult with an ENT. Our neurologist could not put in these consults and our new paediatrician was nearly unreachable. I accepted this was just the way things were and that maybe eventually we would get our ENT consult. In the meantime my younger child was going through their own struggles and needed extra support too. We pushed through, we kept going. I spent hours researching both how to support my youngest child and how to get help for my oldest child. 

Things came to a head, my son seemed to be getting worse. He was doing so poorly I hadn't slept in a full 48 hours. Finally we decided it was time to come to the hospital and push for more help.

We have only been here for three days but in those three days all we have heard is more of the doctors passing it off to the other someone else. We have again heard those devastating words, "We don't know what to do, we have no idea how to help." We were told that the only answers they have is to turn the vagus nerve stimulator off and treat the breathing or leave the stimulator on so we still have some seizure control and do nothing about the breathing. I don't even know how to start to process that. It's devastating to hear that we are in this place again. What do we choose? How to we give our baby the best quality of life? How do we help him? 

Today I am not ok.

 Today I am not ok. I’m trying to be, I really am. I have to get up, to keep going, keep fighting. How can I though? How do I keep functioning when I had to put those awful words out there? 

Our oldest has been struggling, his health has declined. We had a big setback. I feel so guilty, like it was my fault, like I asked for it. He was doing so well, his seizures had become so minor that we didn’t even see them everyday anymore. He hadn’t needed ‘rescued’ with medication or his medical equipment in a long time. He was doing really well and I could see as he was feeling stronger and better, that he wanted to live! He wanted to be able to play and run, he wanted to be a kid, and I wanted that for him.

I asked the doctors to start backing off on some of the medications, just a tiny bit, one at a time, very slowly. Many of the medications my son is one basically slow down his brain, this has a sedating effect, meaning he was always tired. He couldn’t even get through a whole day at school, he slept with the pattern of an infant. 

I had big discussions with the doctors, my husband, my parents, I even tried to talk with my son about it. I spent hours on the internet reading and searching. Eventually we came to the decision that yes, perhaps it was time to rebalance the medication. With the seizures more controlled by his vagus nerve stimulator we could safely wean some medication and see if my son could spend more time awake! 

We slowly, so slowly, with strict instructions from our neurologist, stopped one medication. It went well! Really well, but he was still so sleepy. We waited a few weeks and tried another. We saw some things that concerned us. My son started to regress, he was more awake but he also couldn’t focus on anything, he was getting more and more uncoordinated, he was slurring his speech and sometimes becoming nonverbal. We slowed the medication wean. We started seeing more seizures again. We started having to use more emergency interventions. There was so much going wrong so quickly. We reached out, we asked for help. Our neurology team agreed to order an EEG but it wouldn’t happen for at least a month. Our paediatrician stopped the medication wean and asked for more help from neurology. We were told to restart another medication. 

We did, we restarted the medications immediately. We stopped even considering any other possibility than getting our son stable again. As suddenly as the hope and thoughts had appeared, the visions of my baby running free, being a kid, they disappeared and I again found myself in the dark hold of despair and terror. I was back to the horrible place of not knowing if my child would survive. I found myself terrified to be away from him. I felt like he was slipping away and if I could just cling to him, watch him every second like I could maybe hold off that moment. I again reached out for help. Our neurologist said the paediatrician needed to manage it. The paediatrician thought it should be the family doctor who managed things. Our family doctor has not managed our son’s care in years! Our son is medically complex and fragile, hence the paediatrician and numerous specialists.

We have no answers. We don’t know for sure it was the medications that did this, for now it hasn’t actually solved it. We don’t know what to do. For now we have two choices, we can go to the hospital or we can stay home and try to manage. The hospital sounds ok, safe, like maybe we would get some help! Being admitted would mean someone else has to check his vitals, he would be hooked up to all the machines that alarm if anything goes wrong, there would be teams of people running to fight for him if he got into danger. The hospital also mean we would be risking a covid exposure, we would be unable to see my husband or our youngest child. Being in the hospital would mean being poked and prodded and tested. More medications, more sedation, more interventions and tests and hurt. Being in the hospital might get us some immediate help but some of the tests would still require additional visits and being booked by our doctors at separate appointments anyway. Being home means no sleep, it means I sit by my baby and watch and pray and hold my breath that he doesn’t slip away while I shower or brush my teeth. Being home means he can be comfortable, he can play, he can go outside, he can see his daddy and his little sibling. Being home means he can go to school when he feels ok, he has some normalcy and routine. 

Today I am not ok. Today I am being forced to choose for my child. Today I have the devastating task the unbearable burden of truly looking at my child as palliative, of measuring quality of life.

Today we won.

 Today I did something. Today was really big. Today I was brave. Today I won. 

Anyone who knows me knows, my kids come first. My kids drive me up the wall and there are days all I want to do is hide in the closet eating chocolate but my kids are the most important thing in my life. I will sit and watch the same episode of transformer 900 times if that is what it takes to comfort my oldest. I will buy all the poop toys if that is what it takes for my youngest to smile. My babies are my life and they always come first.

Today I had a big moment where I overcame severe anxiety and talked to a stranger. I do this pretty much every day in the medical world, but this was different. This had nothing to do with nurses, doctors, tests, results, appointments, or therapies. This was just to help my sweet little boy feel less lonely. His best friend moved to a different school last year. Making friends is hard for my baby, he has some developmental delays that make recognizing social cues really difficult for him. Anyway these two little boys had become inseparable at school, they held hands and told each other they loved each other and it was very sad when we learned they wouldn’t be going to the same school anymore and we actually lived quite far away from each other. 

I ached for my baby as he the days and weeks went on and he continued to miss his friend. I thought it would be like most early childhood friendships and my son would miss his friend less and eventually forget about his first friend as he made new friends and besides he still had one very close friend at school.

Those days and weeks turned to months and my son was still desperately missing his friend. He would talk about his friend and tell everyone all about “my best friend, E.” despite having not seen him for three months. My mama heart just couldn’t take that sad little soul, crying out for its kindred spirit. I took an Ativan and called the other boys mom to arrange a play date.

That was a pretty big moment for me but what was even better was that I went to the play date! I wracked up all my courage and spent the next week planning what I would say to the other mom, what I would wear, what my kids would wear, and made sure I told my son we were going to see “E” so that I couldn’t back out.

The day of the play date came, I packed all the snacks (including extras for our friends that I would only offer if it was ok with the mom) and made sure to have sunscreen, bug spray, hats (all the normal kid stuff), plus all the extras that comes with a medical kiddo. The play date was so awkward! Like facepalm, awful, I said and did all the wrong things, and was thoroughly convinced this lady hated me. I wanted to crawl in a hole and never come back out, but my son was so happy! He was having a real childhood moment, an actual just be a kid, play with my best friend, run through the woods, slide down on your belly, eat all the ice cream, normal kid fun! That smile made it so worth every painful moment of that day. I felt like a really good mom.

As the school year went on we noticed that my son was still not really making connections with other kids, he was five years old and parallel playing but not actually engaging with the other kids. We started working really hard at helping him learn to connect with other people, we had help from an amazing team of therapists, psychologists, and teachers from his school. That’s when the pandemic hit and suddenly our lifeline was gone. 

With the pandemic happening my mental health (like a lot of other people’s) became a really big struggle for me. I was terrified of my son getting sick, he is already fragile and at a high risk of death, Covid is .... I don’t have words for my level of fear. My anxiety got way worse, to the point now where leaving the house is an actual really big struggle for me. I do everything I can to not leave the house but there are times I have no choice. With not leaving the house and locking down in a very tight quarantine to protect my high risk family members I found that I stopped talking to people. My anxiety got even worse. It got to the point that communicating with people outside of my immediate family was hard. I was hardcore struggling, more than I ever have in my life. As much as I was struggling I kept going, every day I pushed myself and did what I needed to keep my kids healthy and happy. We homeschooled, we crafted, we gardened, we painted bedrooms, we read more books, we played video games, we baked cupcakes from scratch. I found a way to have groceries delivered, I managed to have almost all of our appointments over the phone. What couldn’t happen over the phone was done by video chat when possible although that still left enough appointments that I was forced to leave the house at least once a week.

I actually started to feel ok and it seemed like I was managing pretty well, and that is when my son got sick. Something was happening he had new symptoms that couldn’t be explained by his underlying health condition. On top of it when I did leave the house I got rear ended - my car is ☠️ and I have some minor injuries but overall I’m ok, didn’t help the anxiety though. As I sorted through all of that and saw my son starting to feel better things seemed to be ok again. I started to find myself coming back to life. I started feeling less of a mombie and more like a person. I was able to actually focus on the deeper parts of my kids again and hear things that I maybe hadn’t been capable of hearing before. My youngest was learning to explore who they were and was actually letting us learn so much about being happy right along with them. My oldest was happy at home and was finally showing real signs of affection to not just me but our whole family! We were getting real “I love you!” and actual unprompted hugs and kisses for the first time in years! Our kids were thriving in so many ways! But our oldest was still talking about his friend and drawing pictures of him and trying to figure out how to send him letters. 

So today I did something. Today was really big. Today I was brave. Today I won. Today I picked up my phone and I texted that other mom, the mom I met once, the mom I had that super awkward play date with, that mom who probably was trying just as hard for her amazing little boy. I texted her and we let the boys talk. They sent videos and pictures and hearts. Today we won.

Mommy is sleeping

I'm sitting here in the darkness, exhausted, fuzzy, burnt out. It's late on a Friday morning and I can hear the world ticking by. I feel guilty, lazy, lonely, as I lay here, in the silence watching his tiny chest rise and fall, counting the seconds every time his breathing pauses, methodically repositioning him when he is gasping, timing the jerks and strange outbursts of laughter. I can see the sunlight, flooding every crevice it finds in the blackout blinds. I can hear the sounds off the morning birds, my husband taking conference calls and video meetings on the patio, the nanny and my baby playing in the living room. I start to get flashbacks of the loneliness I felt being a new mother, I remember endless nights being up to feed the baby. I remember coming near to the end of my maternity leave and wanting to soak up those late night moments of just me and the baby. I remember those lazy mornings when I could nap with the baby and feel no guilt, after all, everyone kept telling me to "sleep when the baby sleeps", but what I remember most of all was thinking it was ok because "one day you will miss this stage of life." I love my children more than anything in the world, they are my everything, but I am sooooo tired! I have a child who's at nearly six years old had the same sleep pattern he did as a newborn - 5 maybe 6 hours max and he wakes up, on a good night he goes back to sleep right away (like a dream feed) on a rough night he stays awake for hours and then crashes for another 5 hours sometime during the day. I still spend much of my time prepping formula, instead of bottles I wash bags, I sterilize soothers, I even still end up trapped under a sleeping child on a regular basis. I am grateful for all the amazing skills my son has, I am so ecstatic at the gains he has made and continues to make but just for one moment I want to complain about the exhaustion.

We are the Fast Four!

I'm working really hard to keep myself mentally healthy right now, I can't lie it's been a really big struggle. Mental health has never been something I've managed very well. As a child I was incredibly anxious, I bit my nails, chewed on necklaces/hair/sweater strings/sleeves, I spent many nights wide awake terrified of any small sound. I was so anxious, my mother used to fondly refer to me as her "little worry wart" and she gifted me with worry dolls (tiny little people shaped dolls that you would whisper your anxieties too, right before bed, stick them under the pillow and sleep on top of them, watch your worries disappear)! Into my teenage years, I would replay every conversation I'd had during the day, over and over, on a loop in my head. I would plan every inch of my outfits from socks to hair elastics and definitely my underwear (God forbid what my grandma said came true and I "got into a horrible car accident so the paramedics had to cut my clothes off.") Early adulthood found me constantly crying because I was suffering from horrible separation anxiety; I'd moved in with my now husband and out of my childhood home.

In more recent years, I've suffered from postpartum anxiety and depression. This is when things got really bad. This is when I for the first time couldn't get better, at least not without some medical intervention. I saw a doctor and started medication, we talked about therapy. I even went to my first therapy appointment; I got a babysitter; I drove to the office; and... my therapist wasn't there (she had apparently called in sick and they had missed my number on the call list). Right after this my son got sick, my life spiralled. Things were out of control and it didn't matter what I did or how hard I tried I couldn't get control. We went through hell, our whole family - like our WHOLE family went through it with us; my parents, aunts, uncles, cousins, my grandmas. We had an amazing community holding us up and helping us. We wouldn't have survived without so much help. We had people gift us money, bring us groceries, clean our house, do our laundry, house our pets, and so much more. Our children were showered with love, gifts, and prayers. I had friends and cousins that stayed up all hours of the night researching every new term or medication the doctors threw at us. I had friends and family that literally let our daughter stay with them for days and even weeks. But the person who held me together, the one who held me up, the one that let me scream and cry and wipe my snotty face on his shirt, that was Shane. He was having a hard time too but there has never been a moment when he hasn't been there for me. He has brought me meals in bed when I just can't get out from under my blanket, he has helped to make sure I take my meds every day (yes I am a nurse but I am also a terrible patient, I hate taking meds), he has worked so many hours to run a very successful company so that when our son needs me, we can handle me not working.

So obviously, I definitely struggle with mental health. It's always been a struggle and now with the pandemic, I've been doing everything I can to keep myself from falling into the deep, dark, lonely, hole. I've been trying really hard to make our house feel like the safest, warmest, most comforting place in the world. I've been keeping busy painting, and wallpapering, restoring furniture, learning to garden, and organizing closets. This is my way to feel safe, to be ok. I was driving Shane crazy with my weekly resolutions and the millions of projects I was asking him to do but he did them. We were doing ok, and then, or daughter decided to show that she was struggling a little. She was acting out, regressing, and we couldn't figure out why. We spent extra time with her, bought her presents, disciplined her, even took her to the doctor. Finally one morning she woke up and declared,  "I am a boy, a boy named Jax." This actually wasn't all that surprising to us, they had always been a very fluid child, and for the past few months they had been playing "big brother" with her dolls instead of "mommy" and randomly proclaiming "I'm a boy!" We decided to go ahead and let our child explore who they were. We slowly broke it to family and friends and we started using the pronoun "they" as Jax was in their own word "sometimes I'm a girl and sometimes I'm a boy." 

That was the point when everything else in my life stopped being important, that was the moment in my life where all I cared about was protecting my whole family, as they were, for who they were. We were facing a whole new ugly side of humanity - homophobia directed at a CHILD! Now not only were we facing the pandemic with a medically fragile child but we were also fighting for our other child to simply be allowed to be their true self. On top of it the world seemed to literally be crashing around me. Headlines of death, hate and destruction were every where. Racism, homophobia, transphobia, just pure hatred seemed to be spewing from every direction. That was it, I couldn't handle it, I stopped reading the news, I deleted my social media apps from my phone (I could still use them I just had to make the effort of going through the computer), I drowned myself in crafts and binge watching tv shows. I needed an escape. I needed to find safety again. These last couple of days I've been feeling like I've found solid ground or maybe at least a sturdy cliff that will hold me for a while. The free fall was really scary but I feel like I came out transformed. I've become stronger and braver; I've learned to stop caring what other think of my life and just live my life. I actually don't care if people think my dog is too big, my yard has too many weeds, my kids are too wild, I'm lazy, my husband is a workaholic, my house is too dirty, or whatever other hateful things I've heard over the years. Take me as I am, love us for who we are; or fuck off. We are the Fast Four!

The Never Ending Story

And so begins the never ending story of moving. I’ve pulled some boxes up from the basement. I’ve Found the tape and sharpies, unbundled the bubble wrap and found the packing peanuts. I’ve talked to the kids and got them on board (at least as on board as two toddlers can be with any plan). So here we go, deep breath, big stretch, and here we go. One box down, then another, and another. Soon I’ve got a whole wall stacked high with boxes. Two large bags full of donations stand guard by the door. I feel like I’ve made some good progress, maybe this will be easier than I anticipated... that’s when I notice the chaos around me. Everything is a mess, between my packing and the kids playing every space on the floor is covered in toys, blankets, pillows, and cushions. Time for a break, quiet time! Off to bed for Zoey. Isaac doesn’t like to nap so much anymore but he will lay quietly with me on the bed while he tube feeds and he usually falls asleep during that time. I’ll just lay down for a minute, close my eyes for a second. I’m so tired. I drift of to sleep dreaming of the new house, the fresh start it offers us. Yet it’s familiar and safe, a haven for us. If I can just get past the packing part I know the next destination is home.

What do you need?

The floor is so full of toys you can’t move without stepping on something. The counters are covered in piles of dirty dishes. The mountain of laundry is so steep and high you can’t even open the door to the laundry room. I can’t remember the last time I showered. There is so much to do but I am stuck. Paralyzed by a crushing desire to sleep. I am so exhausted, so overwhelmed, so overextended.

People ask me how they can help. They tell me just to call if I need anything. The truth is I am not going to ever call someone up and ask for the things I need. Maybe some people would be able to muster the guts to do that but I don’t have it in me. So here, this is what I need. I need someone to send in a fairy godmother who will make my house spotless, have the toys organized, and sort through all the unpacked boxes in the basement. I need a feeezer full of good, healthy, hearty, home cooked meals that I didn’t have to make and that my children would enjoy. I need a millionaire to send money to pay for the bills that are piling up and the medical expenses that won’t quit. I need someone to watch my kids, so I can breathe, sleep, shower, eat a hot meal, take care of myself. I need to not worry about my kids the second they are out of sight. I need my son to get better. I need the fight for funding to be over. I need my leave to not be over in 5 short months. I need to not have to shove a tube in my kids nose so he gets enough nutrients to survive each day. I need to not have a different appointment (sometimes multiple appointments) each day. I need to not feel like I am drowning.

It’s been a hard day and I’m feeling sorry for myself but it doesn’t erase any of what I said. I wish I could just go to bed and sleep for a few days or take a vacation for a while but I have to keep going, keep fighting, keep swimming. I have to do it. My babies need me and no one can take care of them how I can.