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. 


Wednesday, March 25, 2015

Well Hello!

It is in my nature to want to connect with people. To build relationship. to encourage. At the base of who I am these things are very deeply rooted.
I think that is why I started to blog in the first place. I have a profound belief that as humans we are more alike than different. Sure we have differences, but at the base of humanity we are all very similar.
I am to live my life out loud, to live it honestly. My life isn’t perfect. In fact, it is messy,  really messy. But it’s beautiful. And in the mess of it all is truly where the beauty is found.  In the moments of grace that surround our busy schedule, my tired reactions, and that horrid “Witching hour” those are the moments where joy peaks through.

So as I find myself in the midst of chaos generally and don’t use my spare moments to blog- come follow me on Instagram at @laballew  I frequently post picks and share “mini blog thoughts” on my post.  I will still be around here.  I am going to try to post weekly. But I DEFINITELY am there more frequently.

A little update just for the books.

I truly haven’t wrapped my mind around adding a third little girl to our family. Apparently it takes me a LONG time to get on-board with surprises.  In fact, despite this pregnancy zooming by- and the fact I am already 22weeks, I sometimes still forget I am pregnant. I am wondering at this point if I will be totally shocked following her delivery.

Emmaus is frequently saying more words, and throwing more temper-tantrums. And she is really developing a little sense of humor, which keeps us laughing.  

Shiloh is a typical sassy 19month old. She knows what she wants and when she wants it, and her vocabulary is rapidly expanding.  She climbs everything, and has graduated to sleeping in a big girl bed in Emmaus’ room.  She also is good for a tantrum frequently.

I am growing rapidly- (both personally and physically).  I am known to be seen shedding a tear or two completely overwhelmed with my tantrum throwing toddlers and then in the same breath completely overwhelmed in a good way- blessed and thankful for those girls.

And Dan. Well he is the anchor like always.  I married a good one. Seriously lucky.


Thursday, January 1, 2015

2014 Review

As a new year is ushered in the inevitable reflection that comes with endings is upon me. I haven’t blogged much lately and I’m not really sure why. Maybe there isn’t much to tell? Maybe things have finally settled a bit?
As I reflect on 2014 I realize I truly have no attachment to it. We have had some particularly crazy years lately. 2011 Emmaus was born and we dove deeply into being new parents and raising a child with complex medical needs. In 2012 we made the emotional decision to battle seizures with brain surgery. In 2013 we welcomed Shiloh to our family and adjusted to becoming a family of 4. And in 2014, while it had its challenges, seizures reoccurring, lots of work on Dan and I’s marriage, family living with us for 6 months. It also was kind of a neutral year. No huge changes. No major life events.   Looking back on it- even in the chaotic parts, it almost seemed restful.
The girls are growing and changing super quickly. Shiloh is really loving pretend play, feeding her ‘baby’, dressing up, and is eager to be a little helper. She also has a crazy temperament.  She can go from happy to melt down in about 1 second- with tears and all. She is an emotional little girl. Her current favorite word is “nooooooo” said quietly with a scrunched up face, nasal sound and shake of the head. It really is pretty funny because Emmaus’ new work is “Yah”. We ask her all sorts of questions just to hear her sweet “Yah”. Every time you ask a question you can see her process the question and excitedly respond. This is huge progress. And for the most part her Yah, truly means she wants something. Emmaus started a ketogenic diet which has overhauled our families diet. She also started Depakote- the best drug we have used yet (amazing mood control benefits as well as sleeping benefits!) Not to mention between that and the diet we almost have seizure control again! 
We look forward to 2015. Knowing it will be a year full of change, growth and development.  Besides Dan and I setting some financial goals for our family in 2015, I am basically resolution free. No pressing matters to “work on” or huge goals to accomplish.

I started the year by saying goodbye to New Birth Company and solely working at Children's Mercy
We traveled to Destin Florida with the Girls for our first true family vacation. 
Dan and I went to Washington DC to attend the World TSC conference. 
We had fun sharing our home with Dan's brother his wife and their little man in their transition back to KC
Dan and I co-chaired the super hero themed TS walk in Kansas City
I got to take a quick solo trip to Colorado to see my friend Laci

2014 you were good to us. We are excited for all 2015 has to bring!


Friday, October 31, 2014

Remembering the progress.

I am learning. Slowly learning to turn the brokenness of my life into beauty. To be less overwhelmed by the "what should have been" and more embracing of the "what is".
Today I remember where we were one short year ago. I was lost in the world of "newborns" all while navigating a non-verbal, barely walking 2 year old. I remember feeling fully confident and yet completely uncomfortable in my roll of mom to two.
I remember last year wearing shiloh, watching Emmaus parade around her school- holding the hand of her teacher to allow her to walk such a distance.
Today I watched her navigate sensory toys, say hello to many, laugh, enjoy her peers all without a meltdown, or a protest. THAT IS PROGRESS.
Sometimes I feel overwhelmed by how slow her progress is. How slow it seems. But truly- I need to remember the victories. See the progress.
I tend to label things. And recently I have found myself labeling Emmaus as "hard".
But truth is all children are "hard" parenting is hard.
And so in working on changing the way I view things I want to set it straight. Emmaus is beautiful. She is a miracle. She is complex, funny, and sweet. She melts my heart and ruins me in the best way. Her inability to communicate clearly is hard to me because I am so relational. However- the immense progress encourages me. All of this makes me so very proud of her.
And my little tiny baby that so quietly watched the parade last year?
Shiloh is such a funny little girl. And she is so much girl. She has taken to sleeping with not only her favorite bunny, but a Katerina kitty cat doll, and often a random toy. She loves to dance, she communicates her needs well. She has amazing recall, and talks...a lot.
Our life is busy, it is challenging and broken.
But it is so beautiful.
And today I stand remembering the beauty that surrounds us. The faithfulness and the goodness of the Lord to provide growth, progress.


Wednesday, October 8, 2014

More than Enough

About 6 months ago I realized I needed to stop being such a "Do-er" a "make it happen" kind of person. If we needed money, I just worked extra- and truly did this to the detriment of my family. If we had a need I thought, "Well I have a flexible job, I can just work more and make it happen".  And finally I realized I need to stop taking things into my own hands so much. I need to work hard, and yes provide where I can, but stop trying to force things.  And so as a result of me backing off things have been a bit tight.
I was complaining to my mom and she said, "Laurisa do you not have enough? Is there a bill you can't pay, or something you need you can't get?"
It made me realize that we have enough. Always enough. But rarely extra. And this, when things already seem so stressful feels uncomfortable. It would be nice in the midst of a hectic, hard, and overwhelming life to have some wiggle room.
We work hard, We are wise with our money. We save where we can, because emergencies always happen, cars break down, plumbing issues happen, you get mice (I MEAN SERIOUSLY? I THOUGHT WE SHOULD MOVE- LET THE MICE HAVE THE GARAGE, THE WHOLE HOUSE IF THEY WANT?!)

We as a family have some specific needs, and I have some specific desires.  And I have been praying for these things to be provided. After a bit of nothing happening I had this epiphany that while the Israelites were in the desert God provided ENOUGH for them. Not more than enough, not an overflowing amount but enough for each day. However- he did not make them wander in the desert forever- it was a temporary thing.
I started thinking about this after someone randomly send us $200 in the mail. I mean that was a GREAT mail day! And I was starting to feel like maybe it was our over abundance? A bit of wiggle? And then when I was reconciling our budget I realized that $200 perfectly paid for the tire that went flat and had to be replaced on my van.  I was thankful once again for the ENOUGH.

I was telling a friend this story and she said she feels differently, that she believes our story is not one of wandering in the desert, but a story similar to when God turned 5 fish and 2 loaves of bread into an entire meal for a huge crowd as well as extra baskets of food left over.

And then our fish began to multiply.

Dan applied for and received a grant from his work. This grant will give us some wiggle room as well as provide for the money to start the Ketogenic Diet (A diet used for seizure control) for our family.

We went to IKEA ready to buy a new couch with money earmarked for furniture that I had been saving, and the couch we wanted was discontinued in the color we had decided on. On the way home (without a couch) I started thinking about how I TRULY wanted the pottery barn couch- (It is about $1500 more than our budget) And so I asked the Lord for a pottery barn couch. That very day one moved into our living room in AMAZING condition thanks to craigslist.

After many many sleepless nights a friend sent a $25 Starbucks gift card in the mail.

And today may be the craziest. As some of you probably know I wear Emmaus a lot. And that girl and her long legs have outgrown our ERGO carrier. Being able to wear her allows us to go do things as a family. When she gets out of her comfort zone she often freaks out a bit,  and just the sensory input of being close to Dan or I by being worn helps her calm down and enjoy herself.

So today my bestie tagged me in a contest to win one. And as I went to like the picture and enter the contest I thought, "I will never win this thing! God just needs to provide one if we are gonna get one" And I'm not kidding you 20 minutes later a girl I went to nursing school with messaged me and said she saw the picture and wants to get me the one that would be best for us. This is not someone I know well,  she and I were not best friends in nursing school, she just has been the recipient of peoples generosity and wanted to pay that forward.  I am in awe.

So I figured I would just put out one of the other things I am hoping for/ desiring. Not to be greedy. Or ungrateful for what we have been given, but because I believe God is capable of delivering this.

1. Emmaus went to the most amazing preschool last year. It was a developmental preschool that was all day. 8-430 TUES/THURS.  She grew so much being there. This year we have be given the opportunity to send her to Shawnee Mission's Preschool. It also is for developmentally delayed kids.  I am thankful for the FREE education. But I think she is regressing. I think the school she is in now is less intentional with her, and they see so many kids that it isn't the best for her. I have been praying for a way for her to go back to her other school. However- it comes with a hefty price tag. And me working 4-6 shifts extra a month to make it happen isn't reasonable. It isn't good for my family. So I will just continue asking.

We also have had people live with us most of the time we have been in our house. It provides us a way to give back and just a way to tangibly meet a need for those around us. And we have been looking into finishing our basement (it has its own enterance) so better be able to do this. So that is another prayer.

Anyway- just wanted to share the way the Lord has been abundantly providing for us. Cause I for one am amazed.


Friday, September 26, 2014

Grieving Gracefully. Or not so gracefully.

“Grief is like the ocean; it comes on waves ebbing and flowing. Sometimes the water is calm, and sometimes it is overwhelming. All we can do is learn to swim.”

Lately I have been caught off guard by my grief. I thought I dealt with it. Ha.
Grieving is a funny thing. Okay lets be honest there is nothing funny about it. But it is odd. And gross and yucky- and I am trying to figure out how to do it as an adult. Because I have responsibilities. A job. Two kids. My kids have needs, and expectations, therapy sessions. And sometimes they need to eat. (Unless you are Shiloh, then ALWAYS you need to eat)
I digress.
So grieving. Yeah- I am trying to figure out how to do it gracefully. Is there a way? I find myself caught off guard by my grief often and it comes pouring over in the most untimely circumstances.
Our counselor suggested that I tend to wrap my grief up into a nice little package. (Yes We see a counselor- cause that's just good sense)
I wrap my grief up to end holding onto hope. However- he has challenged me to let go to Let God keep me afloat. To ride the waves of far enough to lose sight of the shore. And trust in the deep, that my faith, my Lord will carry me.
And I'm afraid.
I am afraid that in the deep I will be alone.
That the waves will pull me under and I will not be able to swim.
That when I cry out and the Lord will not redeem this huge mess. That he will not come to my rescue.

And I am trying to figure out how to do it in my daily life, without feeling so yucky. Because my grief is thick, it is sticky, and doesn't smell nice. It is heavy.

For a while we were extremely hopeful that she wouldn't have a "severe" case of TS. That brain surgery was her key- and she would be seizure free. That she would "catch up" or develop typically, or with just a minor delay. And as time progresses we are somehow surprised by the reality of where our 3.25 year old is developmentally. How our almost 14month old has passed her so quickly. And that with the return of seizures her development has haulted so quickly. And so we grieve.

So where do I even begin? Do I begin with her?

I should have a daughter who can talk, who can make up funny stories, and can sass me.
I should have a daughter who can articulate her needs. Who goes to preschool 2 days a week for 3 hours and then who can excitedly tell me she was the line leader, or that she made a friend. I should have to spank her butt for calling me a poop head- (I mean just just have heard this happens with 3 year olds).
She should want to dress up in a tutu, she should want to dance in the rain. She should be scared of the imaginary things living under her bed- and when she is scared of them, she should be able to tell me. My biggest concerns should be her bad attitude or how she treats those around her. I would worry about her having a runny nose, fever, and cough.

Or do I begin with Dan and I?
I shouldn't have to worry about missing med doses, and the consequences if I do. I shouldn't have to be sad we can't afford the school that is best for her. I shouldn't feel guilty that we don't have the resources that can give her the best. IE- Therapies, and classes that will help her learn to speak, use a fork, or pull up her pants.  I shouldn't have to feel bad for wishing she was typical. I should get to sleep with my husband more than once a week. And I should never have to say "We don't bite, hit or slap ourself" to my 3 year old.  I should get to enjoy sleeping in till 8am without fearing my child is dead. We shouldn't have to be awake more at night than asleep. We shouldn't have spent a nice downpayment on a house in the last 3.5 years on medical bills.

Because as our counselor pointed out this week, we not only grieve the disease Emmaus has. And the loss of the typical. But we grieve the life we do not have. And the loss of what "should have been".

I know this post seems yucky. And not so hopeful. But I think it is necessary to get through to the place of acceptance. And hope. And back to our reality- where pain & joy will always co-exist. They will always walk hand in hand. But I think this grieving is necessary to thrive there. And not just survive.

So for now please excuse  if this seems less than graceful. If it seems yucky. If it seems uncomfortably real or painfully raw. I assure you it is all of those things. And while our culture likes to sweep them under the rug. I will just continue to write honestly here.