Thursday, October 29, 2015

Chronic Crisis

For the last few months I have been thinking a lot about being a family that lives in “Chronic Crisis” if you will. 
We all will have “acute crisis” in our lives. You know, an unexpected illness, hospitalization, job loss, even a baby being born I think can fall into this category.  A time when as a family, or a person you just need a little more support from those around you.  But after a few days, weeks or months things return to normal.
I think as a society we generally are really good at attending to acute crisis around us.  We bring meals, send gift cards, offering to babysit, clean, do laundry, ect.  It only takes a few minutes/hours out of our lives and we can see the tangible benefit to those who need the help. So naturally it makes us feel good to help out! It’s rewarding!

But what about the family that due to any number of reasons lives in “chronic crisis”?
Four years ago I didn’t even know this was a thing.  And honestly sometimes I just feel like a wimp and wonder if I am just making this all up. But I don’t think I am.

We are a special breed- and we need extra help. Always. Now I am not talking about the level of extra help that those in acute crisis need.  But we need something that is harder I think- we need consistent help for years on end.  Lets be honest, there is nothing glamorous about helping this type of family. Its like choosing to loose weight with diet and exercise (the hard, long way) instead of with a fad diet (the quick, instant result way).

Having a child with significant special needs makes our life look a little different.

*Routine is important with kids, but when you add a special need it often is the most important.
*Sleep is rare. And I don’t mean we had to deal with the infant stage, the cry it out/ not wanting to go to sleep stage, ect. I mean for years now it is RARE for Dan and I to sleep through the night. We have had seasons of almost no sleep, but even at its best sleep isn’t a consistent thing.
*We are always on high alert, and high entertainment duty. Emmaus does not have the ability or attention span to give us 15 minutes of her being content. We are always watching for a seizure, catching her when she stumbles and desperately trying to avoid meltdowns. IT IS EXHAUSTING. 
*Do you remember the stage where your kid couldn’t communicate what they wanted? And they were super frustrated about that? They would have meltdowns over everything? Yeah- we are there. And have been there for years now.
*We deal with the normal illnesses kids get, but then on top of that we are constantly adjusting meds for seizures, and working on the things kids who develop typically just learn- so we do extra therapies, and lots of practice.
*We pay our normal bills, then spend time chasing down medical bills, resubmitting them to insurance, applying for financial assistance programs when insurance denies things, emailing doctors, therapists, and pharmacies- because inevitably we are almost out of meds and our shipment didn’t come….AGAIN. This administrative roll (I jokingly say I am Emmaus' administrative assistant) takes A LOT OF TIME!
*We work extra shifts to cover specialized preschool, couples counseling or even to pay for a vacation with our spouse.
Let me just speak to vacation (as it is kinda a sensitive subject for me). Living with chronic extreme stress makes our marriage fragile. So taking a few days away together isn’t a luxury. It is a necessity. We are committed to making our marriage work and so having a few days of rest, away from the stress of it all is important. So if you see us on a couples trip or family vacation, its not cause that is a luxury to us, its because it is a necessity. It’s because we realize a few days away, will make all the difference in our ability to be married and do it well, or to parent well.

So how can you help a family in chronic crisis?  I asked some families who also have kids with and live in chronic crisis. Here is what they said when I asked what they wished people understood/how they could help.

*I find people will often ask how they can help, but I cannot think of simple way to respond. I would like people to understand, jumping in by just doing simple things is great- make a meal, offer to be around to help, clean my house, or if they are brave and capable offering to do bigger things like watch my kiddos? I have a hard time knowing what ways to ask for help and I always tend to take everything on myself even though I am drowning. I think I am so focused on the big crisis I feel I am wading through I can't see the simple practical ways people could help me, so I just do it myself. To help me, I need people to be pushy because I am always 'fine' and don't want to burden people, plus I am honestly blank when people ask me how they can help.

*The biggest realization I wish people would see is that while we still have our child, the grieving doesn't end, it is like an ocean. Sometimes we have calm periods, and without explanation, TSC reels its ugly face reminding us of diagnosis day all over again.
We’ve been most touched by an extended family we didn't even know we had. A coworker of my husband had been sharing my son’s journey with his church 2 hours away from us. Unbeknownst to us, they held a fund raising at their church for our family, raising $4,000 in a church congregation of 100

*Consider what you realistically can do for our family. And offer to do it. Consistently.  Let us decide if this thing is helpful to us at this point. If we decline let us know you love us and want to be a support us. If you think of something else at another time offer again.

*A Lot of states offer respite care- and a lot don’t or there is a huge waiting list. Ask if the family gets respite care! If they don’t ask if you could help. Let them go to the store (a task that can be nearly impossible with a special needs kiddo), do some yard work, go on a date. Because to just get a babysitter isn’t feasible. We don’t know when a seizure will start and not end, we have to trust someone capable of giving meds.

*I have a neighbor that texts me every week asking if I need anything from the grocery store.

Supporting a family, choosing to stand next to them, choosing to help long term isn't for the faint of heart, it isn't easy- and honestly, I don't know that I would be/am any good at it. But it is a pretty amazing gift. And those of us living in need of consistent help are forever indebted, we are amazingly grateful. 

Thursday, October 22, 2015

Survival of viral pneumonia and other thoughts.

Today as I arrived at the hospital to pack up miss Emmaus and bring her home after our week long stay for viral pneumonia there was a mom laying in the middle of the parking lot cradling her son. He was obviously delayed, non verbal, a husky seven year old, weighing close to what his mom weighed.  She was half trying to get him up, and half patiently waiting, cradling him. As I approached asking if she needed help, she calmly replied "He's just having a seizure. I just have to wait until he comes around and then we can get out of the way."
I sat with her as he became more alert. He looked at me intently and reached out to pat me. I told her he reminded me of my daughter. The mom confided his seizures scare her. I told her I truly understand.  It was just a few minutes, but to make a simple connection, in a moment of true helplessness for that mom who was watching her boy battle his own body- for her not to be alone in that moment- isn't that what this life is all about? I found myself asking how do I best support those I live with on a daily basis? For the strangers I meet?
I often wonder what it will be like as Emmaus gets older. Will I be that mom cradling my sweet baby as she has a seizure in the parking lot- other people totally freaked out, and that just being our normal? I sometimes fear her getting big, because I know it will be harder for Dan and I physically.  It is one of those things I try not to think about much, because I know I do not have the grace to handle those challenges yet, but will in time.

This has been a week of us needing help. Lots of help. We have had meals brought, so many people babysitting, people cleaning, grocery shopping. Our tribe stepped up. We were not alone.
Although it wasn't an ideal circumstance both Dan and I reflected on truly getting quality time with Emmaus this week. Since we have three girls we rarely are 1 on 1 with her for extended periods of time and to truly have that time was a blessing. Even though her words are few she has a great sense of humor and I truly think she's funny!
She would request things and then laugh and say "Nooooooo" if it was something she couldn't have. My mom taught her to fake snore- which truly is her making a "shooooooo" sound. And whenever she would lay down to sleep she would look at me out of the corner of her eye and do this.

This week thanks to our amazing support we truly smoothly sailed through the challenges of having an infant, a two year old and then Emmaus in the hospital.  It wasn't easy, and my mommy heart was definitely pulled in three as I felt each girl needed me in their own way. (Some being more vocal about their needs than others!) But we survived and I am so thankful that tonight we are all under the same roof.