It’s the times when life gets the most hectic, the most chaotic that I have to remember “BE THOUGHTFUL.” It’s like being mindful but even more. You have to really take a moment and breathe. Take it all in- even the craziness of it all and remember- it’s going to be ok! Yes it truly is.
For us- our lives- my husband and myself- our lives have been chaotic since we got married. I suffered from PTSD and this guy- this nut of a guy- well he must have been a nut to have married me- but this guy- he took me into his life warts and all. I will always remember how he never rejected me (well there is that yogurt aisle incident when he dumped me 3 months into our relationship but I’ll tell you that story later).
Our married life began without much fan fare and we started to think about having a family. I went to therapy to ensure my PTSD was under control before considering having children and I worked. My husband pursued his software engineering career and life was good. It’s really always been good albeit it interesting. We got pregnant although not easily needing some testing and a very painful procedure for me but we managed and poof our 1st child arrived 3 weeks early in August of 2003. It was a typical birth- well not that any birth is typical. But it was wonderful to become parents. We sat in awe of this little human being we created. I was so worried to leave him. I knew that John’s family had a familial seizure history and that he had them as an infant. I knew the history, I had done copious amounts of research but I’d never seen a seizure and I wasn’t prepared to be a mother of a newborn who had seizures.
Day 2 of his life- and even though they’d encouraged me to shower before this- I was afraid and didn’t want to leave Quinn. I finally realized I was clearly over-thinking things so I hopped (well hobbled) into the shower and within a minute I knew something was terribly wrong. There was a lot of activity in the room. John had been holding Quinn so something bad must have happened. I finished up as quickly as I could and my baby was gone. GONE- Quinn had an seizure while I was in the shower- he had turned blue and they had rushed him off to do whatever one does when this sorta thing happens. Moments blurred into other moments- minutes seemed like hours and soon they came in to tell us they were doing a spinal tap on my baby. They wanted to make sure it wasn’t meningitis- a cause of seizures in infants. I told them that there was a genetic history before we even went into labor but nobody listened and honestly there is protocol to follow so I get it. They informed us that they’d be transferring him to Boston Children’s hospital and that was that. Here I was in a gown, in a hospital, without my baby. They agreed to discharge me although I had some pretty significant stitches from the huge headed, large chested baby (his abdomen got stuck on the way out- can you imagine? NO DON’T- it was painful!!!)
So without going thru the next 14 years I can tell you that that moment is when our medical dramatic life began. We have 3 children, all of whom have the same genetic seizure disorder and all of whom arrived early – although Meghan attempted to make her debut at week 28- and all of whom had seizures til age 6 or 7. My life was always on edge. In addition our youngest had terrible asthma and was hospitalized twice as a child and also had 4 surgeries before age 4 (tubes in his ears 3 times and tear duct surgery at 11 months). Add to that a hospitalization for me- one for John and the “normal” pediatrician visits- it was insane at best. But that is OK- but for me it really wasn’t.
All those years of stress took their toll on my body. I never drank coffee til Meghan arrived and since at the time we were in living in Seattle in 2004 I began to drink it there and strong coffee too. I lived on too much caffeine and too many scraps off the kids plates but I survived, they survived and we survived 2 cross country moves (Boston to Seattle, and back to Boston) and another half-cross-country move in 2013 which landed us in Illinois. We have survived a lot and it’s been great and wonderful and amazing and chaotic.
John had double jaw surgery in July to treat a longstanding sleep apnea issue. He’s fine- 9 weeks post op and although it was a surgery I’m sure he wouldn’t wish on his worst enemy he did it to ensure he’ll be with us for a long time. Did you know that people with severe sleep apnea die early? Sleep apnea taxes the body and all the organ systems and it shortens your lifetime. Nope- not my husband- if he’s going to die he’s going to do it with every ounce of prevention he can. And so he did the surgery and he’s good.
A few weeks ago- someone asked me how the family was doing? We are good- finally in a good stretch of health. I had experienced some chronic fatigue and pain and itchy skin that wouldn’t quit since we moved here in 2013 and finally in May/June we got that diagnosed and resolved. Life has been fantastic.
We went from homeschooling our 3 kids to enrolling them back in school and we have a major life shift- but it’s good. All was going well til last Monday night. Innocently petting our dog (no this is not a dog bite story) and my youngest, Cole, went to get off the floor. Of course our couches are just large, soft, expensive dog beds – so Snickers was on the couch- Cole was on the floor and he complained that he couldn’t get up. “Really” I yelled- “Seriously Cole- It’s past your bed time. Love Snickers later and GET TO BED!” He mumbled a complaint and hobbled up the stairs. I didn’t think another thing about it. Nothing. Dropped him off at band early on Tuesday morning. You know the drill. Car line- drop and run. I didn’t even see him walk in although I do make eye contact with the teacher holding the door every band day so he was good. On my way to drop Meghan off to middle school and then back home. My “new normal” routine.
I am still a stay at home mom- figuring out what is next for me. It’s ok and I’m ok with it. So Tuesday and Thursday afternoons I am sure to walk and help Cole carry home his trumpet and chrome book while he manages his heavy backpack. I do it not because I have to but because I can. So this Tuesday I make it to our normal meet up spot and no Cole. Keep walking- NO COLE- keep walking and there is my baby barely able to walk crossing the cross walk near the school. I run to him and (that is a feat for me) with the dog and say “Did you hurt yourself at recess??” and he yells at me “MOM- I’ve been this way all day. I told YOU that I HURT myself LAST NIGHT!” I felt like the biggest jerk ever. I immediately called the doctor and that is where our story just gets more bizarre.
I guess it’s not bizarre at that doc appointment because the pediatrician assumes it’s a strain- FROM PETTING THE DOG??- and we are sent home with a note for school and heat and advil. Easy right? Well he makes it about 2 hrs the next day complaining of burning pain in his hip. So we call the doc and long story short- we wait and stay home til Friday. So he is now 4 days and is having difficulty walking. Limping and honestly preferring to be in the recliner on the couch or in his bed. This is NOT my child. He does NOT stop at any point – EVER- well unless you plunk down his computer or a video game but generally speaking this child is on the move.
So we are sent to Orthopedics- we get seen- hip muscle tear perhaps? (That was Friday night.) We get an MRI Monday and it was clear- we get sent to Infectious disease Tuesday to rule out Lyme. She doesn’t want to even test him. I’m annoyed and follow up with Orthopedics who is equally frustrated and he orders the tests himself. I feel like a rag-doll at this point having spent half the day at Advocate Lutheran General Hospital with no answers.
We get the bloodwork back last night and nothing- he’s fine. Lyme tests still pending. And now this morning- this THURSDAY- I am trying to be thoughtful. What I forgot to mention is that Cole has been complaining about his legs/ankles for months maybe even over a year. We always tell him it’s growing pains and we lovingly refer to him as “the 90-year-old-man” because he’s always complaining about aches and pains. It’s eerily familiar to my childhood though and so I acknowledge that something might be up. I also remember how a friend’s child- a few of them actually- have Ehlers Danlos Syndrome (EDS). In the summer I called and put both Meghan and Cole on Dr. Brad Tinkle’s waiting list- he’s the genetic doc whose specialty is EDS. I called yesterday by chance to see if the 2 yr wait list had shortened. I told our tale of woe and the secretary (always be nice to those people) put us in for an October 23rd appointment. Yippee!!
So- for those of you that think I can’t stop talking. I can- and only because I have to take Cole to the Orthopedic doc. My baby can’t walk- he can’t bear weight on his right leg. His MRI is clear, his blood work is clear- the Lyme test just came back negative- holy smokes (literally just got the call just now)- and so we go forth. We are thoughtful and breathing and trying not to panic because how will that benefit us? It won’t.
So I will leave you with this- be thoughtful- remember- EVERYTHING IS GOING TO BE OK!