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.


Sunday, September 27, 2015

Back to work I go!

I have no idea how eight weeks have passed since Lennon arrived.  I officially start back to work tomorrow and I would be lying if I said I wasn’t a little sad about it.  This is the first time I am returning to work after having a baby and am truly excited about my job, and not longing to stay home like I have after the last two babies. But it is still bitter sweet.
I know I am entering a season of work, where the wide open space in our schedule that came with me being on maternity leave will disappear.  I will be forced to buckle down, be super organized and our schedule will have to be as planned as ever to pull off having three very young children, two different work schedules, Emmaus’ school and therapy schedule, meals to plan, not to mention church and social schedules.  I am excited about the opportunity to meet some of the financial goals we have set for ourselves. To get back on our feet a little after a self-funded maternity leave. All while doing a job that I am really loving!
I know I/We can do it. But there is a little fear that this transition from 2-3 that has gone so smoothly is about to get hectic, and hard.  I know my capacity to handle things gracefully will get thinner just because I will be working. 
Last year Dan and I had one of the harder years of our marriage. We went to A LOT of counseling to get things figured out, to learn to communicate again, to grieve the loss of a typical life- the type of life we had planned before Tuberous Sclerosis became part of our reality.  And I am just kinda fearful that things will get shaky and unstable again.  
I think even being aware of these fears is good.  Finding ways to safeguard against them, ways to plan a head and take some of the stress off of things when I can- simply by not waiting till the last minute to get things done.
 Planning ahead doesn’t come naturally to me. So here goes nothing!
But, seriously. 8 weeks already?  How is that possible? Please slow your roll baby girl. Things are going by too quickly! 


Friday, September 11, 2015

Lennon Jean: A Birth Story

Lennon. From the start you were a surprise. You were outside of our timeline- but in God's perfect way, your existence, your entrance was just as it was meant to be.  This is the story of your birth.

Pregnancy number three. This was a hard one for me. I wasn't in the best shape at the beginning, I wasn't planning on adding a new member to our family so both physically and emotionally this pregnancy was hard. Your body naturally remembers pregnancy oh so well. So with each life growing, your body is a little more stretched, your muscles a little less strong and this was no different.  I slept amazing this pregnancy. The whole time. And that may have kept me sane.
Mentally I didn't really let it settle in that we were going to have a new baby until about mid June soooo around 34 weeks? We had some pretty intense stuff happening in our lives, job change, insurance change, autism diagnosis, large medical cost, new school and therapy regiment for Emmaus, and I just couldn't deal with pregnancy too- so once all of that was settled I let it sink in that in a few short (except for the last 9 days) weeks I would welcome a new little one.

I had gone 9 days late with Shiloh and it was pretty mentally hard for me. So this time I was determined to make the best of things even if I was late. And for the most part I think I took the waiting in stride. But waiting is hard. Always.

I had a few days where I thought I was in labor, in fact enough of them that I was beginning to feel like the woman who cried labor. I mean this WAS my THIRD baby, and I had waited for labor each time, so you would think I would know what was fake vs real... but no. More than once I got everyone excited for nothing. I had a feeling it would be a fast labor so the last few weeks I wasn't super willing to be far from home. I just knew I would need to be close to the birth center when things picked up.

August 3 (9days overdue) I was showing more signs that maybe this would be the day. When I would have contractions- which wasn't very often they were hard and hurt, which was a change from the previous days.
By the evening I decided to go ahead and get checked, I still wasn't having super consistent contractions, maybe every 20 minutes, but they hurt. I just truly wanted to make sure I wasn't 8cm or something, really just wanted to gauge how quickly I needed to get to the birth center after things picked up.  I was a "stretchy" 5 but baby wasn't super low. I had been a 4-5 at 39weeks.

At 850 dan put the kids to bed and I was laying on the couch thinking "THESE CONTRACTIONS ARE SPACING OUT!! THIS BABY WILL NEVER COME." I was wondering if we should go walk up and down our street to see if I could get them going or if I should just go to bed.
Dan came and sat with me on the couch, and put his hand on my belly. We chatted for a minute about how much she was moving, I wondered if she would be our last, if these movements of a baby in my belly would be some of our last to experience together. Then she really MOVED. I think the word is engaged. I had a hard contraction. Decided to get up and go to the bathroom- which was difficult, and by the time I stood I had another hard contraction. After it passed I walked the 20 feet to the bathroom and was dry heaving by the time I got there, shaking, my teeth chattering, and I had another contraction. My labor literally went from "is this peetering out" to "woah, I'm in transition". Dan's mom was called, our midwife (who was at home 25+ minutes from the birth center) and our dear photographer- all of which jumped into action to get where they needed to be so this baby could come.
I had been praying for time, for time in labor, to adjust, to have the communion with the Lord that I have experienced the last two times. That it wouldn't go so fast that I couldn't cope. My labors in the past have been very peaceful. They truly are some of the most beautiful experiences of my life. So I really wanted to have a similar experience this time as well.
We got to the birth center before the midwife and waited in the parking lot.
I had texted her at 9:15 while we were driving to the birth center requesting she drive fast.
I had lost the feeling in my hands at some point on the way to the birth center. I could fist my hands, but not relax them, they were totally numb, and so was part of my face. This of course freaked me out. I mentally did an assessment on myself (Yes I am a nurse even in labor). And of course told Dan if I passed out to call 911- I'm sure thats exactly what he wanted to hear while we are alone with our photographer in the parking lot- (Although I'm thinking okay- at least he isn't truly alone if I do pass out!)
Okay, I can feel my feet, my contractions, my hands and arms are numb, but I still have some strength in them, my blood pressure doesn't feel high. I feel calm and not panicked, so this isn't anxiety related.... I don't think I'm having a seizures or a stroke, I feel really mentally sharp, surely in these situations I wouldn't feel mentally sharp? (Yes hilarious I know)

The midwife arrived and we got into the birth room at 9:38. I hollered for them to start the tub as we were walking back. (I'm bossy what can I say).
I pretty quickly got in the tub, had a few contractions, listened to some worship songs. Around 10 I asked dan what time it was- I felt it was going so fast. It was, but my timeline was off so it calmed me down thinking I had been there longer than I truly had.  At 1011 my water broke, and immediately the sensation in my hands and face returned. I guess the pressure from my amniotic sac was compressing something in my spine? The midwife checked me I was at 8cm. But felt like I needed to push.
A few minutes later I started pushing and two or three pushes later her head was out. (If you are into natural birth and ever get the chance I highly suggest a water birth- SOOO much gentler than a land birth- sorry for those of you who are reading this thinking TMI- you may want to skip the next few lines)
Head was born no problem, and then the midwife had a little trouble delivering her shoulders and I couldn't move enough in the tub to help- so I "hauled ass" as I like to say- out of the tub so I could get into a better position for her to be delivered. Her shoulders were very easily born after I moved. I know it sounds a bit chaotic, but it truly was a beautiful birth.
Lennon Jean Ballew
Aug 3, 2015
8lbs 8oz, 21.25 inches long 14" head

(A whopping 1hour 32mins from "Is this actually labor to birth" )

She is a relaxed little one. She is by far my easiest and most content baby. I will be interested to see how this plays out in her little personality. She has been a seamless addition to our family, so far a much easier adjustment than when we went from 1 to 2. Her sisters are in love. We are in love. Mothering her feels so natural to me.

I don't have enough space on our old ghetto computer to download the birth pics and post them on here, but if you are interested I am linking to the incredible video and photos that were done by Allison Corrin Photography.  This is the second birth she has captured for us, the images are beyond beautiful and priceless to us.

Link to her blog with the photos
Link to the amazing video she put together


Sunday, June 7, 2015

A few thoughts about vulnerability and needing help.

We had some friends over this evening and were talking about vulnerability. Being vulnerable, needing help is often seen as weakness. How many of us are guilty of running to the grocery store when we need an egg, a tsp of vanilla or some other ingredient mid-batch of cookies instead of asking a neighbor for help.
Dan and I were both raised to be fiercely independent. We learned early to take care of ourselves- (Not that we didn't have parents also taking care of us, we did, but we also had parents who valued raising independent children). To work hard, and honestly, it is very humbling to need and ask for help.
I remember when Emmaus was pretty little feeling super overwhelmed. How could I manage to work, care for her and meet her medical, developmental needs, and manage all of the doctors, insurance info, ect. A friend who is the mom of 8 came along side me and told me mothering even one is hard (THIS IS A WOMAN WHO HAS 8 KIDS!!) and that its okay to need help. I remember feeling so relieved that it was okay to need help. So my long journey to break my pride started and the first little bit fell away.
I don't see it as weakness when other people need help. In fact I love to help people. I am a fixer, a do-er. Yet, in myself, for our family I struggle with it.  I kinda laugh now thinking about that time. And have all sorts of grace for myself! Of course I was overwhelmed! I had a new baby with a medical complexity who was ALWAYS seizing. She rarely slept between eating at night and seizing. I had never been a mom before, which is a hard transition anyway, and we were pretty financially stressed. In that time we had to buy a new car and we moved. UMMMMMMM sounds like a lot to me!

So much has changed since I wrote my last blog. Honestly- it has been a head spinning few days.
So here is what's happening. We found out that the school Emmaus went to from age 2-3 has an opening. (She still goes to therapies there once a week) We didn't love the public preschool she attended last year- although it was free, so that was a perk! However, they do not use ABA therapy so we would have to do both public preschool and the in-home ABA for next year. Which, is just a lot for a 4 year old!
So we are planning to send her back to her the first developmental preschool she attended 3 days a week in which she will receive ABA, PT, OT & Speech all integrated into her preschool day.

We still are having to make some major changes. I will start working more hours so we can pick up insurance through my work. This is okay. It's not ideal while adding baby #3 and adjusting to that, however, it will provide us with a sustainable way to provide for Emmaus' therapy needs.  My bosses at work are basically amazing and are working with me to make this happen before baby.

So instead of looking at a 12,000-15,000 cost for ABA therapy through October. We are now looking at about that for a year! It still is a lot of money, but much less than we originally were looking at.

Some friends of ours have set up a Go-fund-Me account to help us off set these costs.  Again- we are learning to chip away at our pride and be grateful for the help.  And be grateful for the opportunity to learn to ask for help, and accept it.

Sometimes I look at where we are in life. How different parenthood is than I imagined. The challenges, sorrow, loss and joy I have learned in being Emmaus' mom.  It is all so different from what I imagined. So much harder- but better.  I am better because of her.  Being Emmaus' mom has made me very weak,  it has taken a lot of help, (And she's not even 4!) but the community we have gained along the way, the humility we have learned in accepting help, and the joy we now have to be able to give to others when we can is pretty cool.

Here is the link to the go fund me site. Don't feel like you have to give. We feel very supported either way and know the money will work out. It always has before and we have faith that this time will be no different. Thank you in advance to those that can/want to give. We are very grateful.


Sunday, May 24, 2015

Where we are, and what the plan is...

Earlier this month Emmaus was diagnosed with autism. Tuberous sclerosis is the leading genetic cause of autism, so we have known from the start autism was a possibility. However, Emmaus has always been pretty social so I haven't really thought much about it. In the last six months we have become more concerned about some of her behaviors. She has become much more stressed in social situations and when we try to take her out of her regular routine. She also has developed a lot of repetitive behaviors.  Luckily she has remained an excellent snuggler and truly loves being with people, she just often has a hard time knowing how to engage with them- especially with peers.
We booked an appointment with our local children's hospital to have her evaluated and without a hesitation they said she has autism.
I knew the diagnosis was coming, but was kind of surprised by how hard I took it. When your child has a incurable genetic disease there is a lot of rolling with the punches.  As parents it is our job to protect our children, to "make things all better", to educate them, love them, teach them to become independent. And with TS so many things I cannot make better, I cannot heal her. I cannot stop the seizures from coming, or the tumors from growing.  I cannot figure out what is wrong in the middle of the night because she can't tell me why she is crying.  However- I felt we were being intentional about her education, her therapies. And then when you find out actually this whole time we haven't been speaking her education language.  So not only does she have a developmental delay, but we have been educating her in the wrong language? Yeah. That didn't sit well with this pregnant mama.

The recommended therapy for Emmaus is "Intensive ABA therapy". It is a therapy that has been proven to improve the social, functional and educational abilities of those with Autism. It is their language so to speak.
The great news is that there has been a huge push for insurances to cover ABA therapy. It is even government mandated in many instances. So I felt hopeful we would easily be able to get her the therapy she needs.
However- the insurance we have does not have to comply with this rule for a few reasons. I kinda feel bad for the sweet lady who had to tell me that on the phone when I called to check our benefits- cause I lost it. Full out 30+ week pregnant woman sobs.
We have done a lot of research on therapies. And have found a wonderful in-home therapy group. This group will address her speech and fine motor needs in an ABA approach and work with her (And us) to teach appropriate social skills, to educate her in a way to improve her independence, language, ect.
This therapy isn't cheap. The recommendation for Emmaus is a minimum of 10 hours per week. 2hrs per day.  We are hoping to start with 6 hours per week through the summer plus a 3 hour per week social skills play group. Which will run about $2,500 per month for June and July. Then when school starts back up in August we will just do the in home hours.  Starting in October when I go back to work after baby- the hope is that I can receive benefits through my work for our family since they cover this therapy.
I am not even stressed about the finances of all of this. 2000-2500/month? It's literally laughable. Because honestly- we are so far away from being able to afford this each month.
We have prayed a good amount about this whole things and feel peace in moving forward. We will be applying for several grants to help lower the cost. And literally the day after we decided to move forward a friend called with TWO $500 checks towards Emmaus' therapy.  If you are reading this and feel compelled to host some sort of therapy fundraiser for miss Emmaus let me know. We would welcome that.  We are open to ideas and options to get this funded through September.

Dan and I are both really glad we can work hard and provide for our family. We have had some very generous help along our journey so far, don't get me wrong. But mostly we can work hard, provide for our girls even with the medical expenses and we do okay!  But this- we cannot do alone. If timing for all of this was different, maybe I could increase work ours now, switch insurances now, ect. But this just can't happen till after I am done with maternity leave. So I am excited to see God work. To see funds come in, therapies happening and growth for Emmaus!


Wednesday, May 13, 2015

Learning Grace

I will hold myself to a standard of grace. Not perfection. 

 Oh how I wish this came easily for me.  Tonight as I was bathing the girls I literally was thinking "If I don't have sometime to myself soon I am going to lose my mind."
Then I battled with my guilt in feeling that way. I had this morning to myself! A sitter came so I could go to a work meeting. And for those 3.5 hours I wasn't responsible for anyone but myself.
Except- that's just not true.
In that time I called the pharmacy- to have them call NORD (who pays for one of Emmaus' meds cause its hella expensive) so I could pick up her med this afternoon.
Then I called our insurance company to see if ABA therapy is something they cover. (Looking into options for Emmaus)
Then I got to the meeting.
Then after the meeting I went to costco, the bank, and called Emmaus' current therapy place to see if they offer ABA and to see if they had any other in-home resources for us.

And somehow I think that was "time to myself?"

I feel confident in my ability to mother. I have always wanted to be a mother. I have always had an innate desire to love- and love well. To encourage and speak life and truth and confidence into my children. I feel truly honored to get to mother three girls.

However- I often lack the confidence to mother Emmaus. To provide what she needs, while not making our whole life about her. I struggle with her routine, her appointments, and the administrative duties that come with all her special considerations.

Yesterday I took Emmaus to her autism evaluation. I knew she likely would be diagnosed- clearly she isn't socially appropriate, yet I was surprised when the diagnosis stung. I was surprised how much it tasted like vinegar as the words level two autism were spoken over my girl.
I was unprepared for some of the observations of the doctors. Things I was feeling pretty good about, were explained away in two seconds.  It honestly felt like starting over. Like hearing about TS for the first time.

I don't generally feel much guilt about things- especially in mothering. But yesterday thinking about the sacrifices my other girls will have to make on account of Emmaus. I felt guilty.  Was it fair for us to subject them to this road?
Of course I come back to the reality- that Emmaus is a blessing, and they truly have the reward of a sister like her.  She will always love them, she will teach them, and find simple joy in them.  She will give them perspective and love.
I so wish we could wake up and she could be whole. That I could hear her sweet voice, and know her thoughts.  That she could tell me how she sees the world, what she did at school, what she wants for dinner.
But then- I guess she wouldn't be my Emmaus. Her tender hugs, and wanting to be rocked would end. Surely she wouldn't be immediately calmed by my singing, or holding her tight.  The simplicity that comes with her complexity wouldn't be there.
And though I might have more "me time",  less administrative work and definitely less appointments and therapies, I also wouldn't have this simply beautiful girl slowing me down, teaching me about the reality of life.
So for now I will just work on having grace for myself. In not feeling guilty for running away from home to aimlessly wander hobby lobby and target by myself at night. In allowing myself to be sad, cause gosh darn it I am freaking almost 30 weeks pregnant and the Dr just confirmed Emmaus has Autism. I will work on letting the dishes pile up in the sink (Dan is laughing- cause this comes naturally and doesn't need any work) and holding the girls when they want to be held. When Emmaus comes and finds me in the kitchen, grabs my hand to come to the couch so she can sit in my lap and watch her show, I will join her. Because for now- we need each other. And to have the grace to sit and be still and unproductive must be learned.