Sight to See

 

 

When I returned to work after having my first child, a co-worker asked me how it was going, and I honestly said,“It’s a sweet time, but it’s areally hard time too. Med time feels impossible. Trying to get a newborn to take so much medicine twice a day feels impossible.” My coworker brushed off my response by saying,“oh my gosh! I know! My son has reflux and getting him to take his medicine is awful.”

 

That broke something between us. My coworker was comparing giving her son less than 1 ml a dose of meds for acid reflux, to me trying to give my child 30mls a dose to stop her seizing body. I had never felt so un-seen. So unheard.

 

I am the mother to a child with medical and special needs. Her genetics are a bit wonky and so she grows tumors without pause in her body. She has heart, eye, brain, kidney, and skin tumors. As she grows she will likely grow tumors in her lungs that will kill her. Genetics aren’t fair but they are what they are. And so we make the best of the life that we have with her, knowing it will never be fair, but aiming to live a REALLY GOOD life.  I am also the mother to two neurotypical, healthy children so I also understand that having neurotypical, healthy children isn’t exactly a walk in the park. Being a mom is hard. HARD.

 

Now I am sure my coworker meant no harm, but she wasn’t able to hold in tension that my hard and her hard were different. They are BOTH hard. But they aren’t the same.

 

A couple years later my daughter had brain surgery. A surgeon cut open the bones on her skull, and entered her brain to remove a tumor that was causing 90% of her seizures. It was a last-ditch effort after multiple failed meds to try to gain seizure control.  I don’t feel like I have to go into the fear and pain that surrounds your 17-month-old having brain surgery. I think all mothers and fathers can comprehend that reality.

 

A few months later my best friend’s daughter got tubes. My friend handled that situation beautifully, stating, “I’m scared, but I know it isn’t quite like brain surgery.” And the truth is, handing your child to any surgeon for any reason is SCARY. But she was correct, tubes aren’t like brain surgery. They are both scary, both hard, but they aren’t the same.

 

A few years after brain surgery, my daughter almost died of the common cold. She got a horrible pneumonia and it damn near killed her. But her life was spared. This experience has left a mark on us.  When my other two neuro-typical, healthy girls get a cold and a fever I am concerned. It SUCKS when your kids are sick. You sleep less, you worry more, and it’s HARD. But when my oldest gets sick, a new level of fear enters my heart. A fever shows up and I wonder, does she have pneumonia? Will this be the cold that takes her from us? I don’t think those things about my other children.

 

I didn’t fully understand these things until I had a child with special needs. I didn’t have this perspective until she was part of my reality.

 

When she was sick and dying, if my friends, or even people I knew had said, “Well, my kid is home with a cold, so what about them,” people would think those people were insane.

When she had brain surgery if someone commented saying, “My kid just got tubes. I get it,” people would roll their eyes, comment and suggest those things aren’t the same.

 

Yet, when we swap this story and involve the Black Lives Matter movement, white Americans feel it appropriate to say All lives matter.

 

OF COURSE THEY DO.

 

But that misses the point. It fails to hold perspective. It fails to hold the pain.

 

There are times when it is appropriate to hold in tension and with perspective what people are going through. There are times it is important to stand with people going through hard times. And NOW is one of those times.

 

 

 

 

Growing up I knew a family who had three girls. Their mother was relentless about promoting good relationships between them. She spent endless time encouraging their friendships, and weaving in the values of sisterhood. Of standing for each other, encouraging each other, of assuming generously,  of loving each other well and protecting one another.  I knew when we had Emmaus more than anything she needed siblings. And in my heart I knew she needed a sister. And she got lucky enough to have TWO! It is both such a wonderful joy and deep responsibility to sew these values into my girls.

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Lately as Shiloh and Lennon grow more into their own (very different) little personalities a value we we have really had to work on is kindness.  And like all things I know it starts with me modeling kindness.  By nature I am a very direct person. And often time my directness combined with the stress of the moment doesn’t come off in the most kind way.  This is most evident to me when I hear my girls interact with each other when they are frustrated.

WOOF. Excuse me while I go eat a peace of humble pie.

I know the best thing I can do is redirect their interaction and work to correct mine, which often involves me apologizing and asking for forgiveness for being what my husband likes to call “snippy”.  Whoops.

So here’s to the mamas out there constantly growing while we try to raise these little people.  Keep up the good work!

This is not my story

I have learned to roll with the punches. Having a child with a completely unpredictable, highly complex genetic disease has taught me my plans are not my own. That what I thought my life would be is not even close. And that I truly have almost no control.  This lesson has come at a high price. Lot’s of grieving, counseling and a really good anti-depressant. And I feel for the first time since hearing the words Tuberous Sclerosis Complex I have come to terms with the reality of my life. However, 7 years in and we are tired.

This is an EXPENSIVE life and having a child that still is in the “can’t be left alone, needs to have eyes on them 24/7” phase is exhausting.

We realized about 2 years ago we were going to need some help. 

I have spent 18months fighting to get Emmaus state services. You see most state services are based on income, however, it is possible, but extremely hard to get a child with disabilities onto medicaid only looking at THEIR income- which is usually zero.  We finally got her onto medicaid, which I felt like was a huge win in our fight. You have to keep in mind every single step of the way the people who are “helping” with this process are overworked, and truly not invested, and so it basically fell on me to make sure people are doing their jobs and our process is moving along. 

If I did my job as poorly as most of these people all my patients would be dead and I would be in jail.

However, they are our only hope of getting these services in place and so choosing kindness, working with them, trying to encourage them, and let them know what this means to your family, it is all part of the process. 

Once on the waiver it is time to apply for supports, which happens to be part of the deal, if you don’t use the supports you lose the waiver, but wouldn’t you know it- it is almost impossible to actually get the supports. We finally did, and then two weeks later, during our annual review the review board decided we actually weren’t able to get them for a long list of ridiculous reasons. And then magically after my total meltdown and call to action with our case manager we were granted them again.

UHHHHH WHAT?! 

I have come to terms with Emmaus’ disease. With flexing my career, where we live, our finances around her having TS. I can deal with the unpredictable, because SHE is precious to me. These challenges, how we have adapted, the incredible joy she brings, and more than that- how we have chosen to live with reckless hope, All of that is our story. 

However, I will not be a slave to this broken system. I am so thankful for the resources we currently have, don’t get me wrong. They are giving us freedom we have never had. However, they do not come without a cost- an emotional cost, the unpredictability and fear they might at any time go away leaving us suddenly without help, or a plan. That is not how you should have to live life. And it is not how I plan to do so.

THIS WILL NOT BE MY STORY. 

And so once again I must evolve, I must grow and shape something that gives us freedom to live differently.  These are the things that change us. That drive mankind to be more, to do more, to live lives of freedom. 

Everyone has a breaking point. And this is mine. 

For Good

I went to counseling today. Like every week. YEP… hear the money zooming out of my bank account. And yet, it’s the best money I have probably ever spent. 

I have had some really challenging relational issues this year. LIKE WOW. And I am not even meaning primarily between Dan and I, although those have been sprinkled in here and there.

I don’t like it when things don’t end in a place of resolution. I am a dig deep kinda girl. I want to talk it out, fight for the precious relationships in my life, because if I chose you as a friend in the first place I believe YOU are worth fighting for.

If you know me personally you know I am a verbal processor.  I will tell you all about the stuff that feels safe, I will work it out in front of you and while it seems vulnerable the real hard, painful stuff I don’t share a whole lot. My places of feeling like a failure, or of shame, they don’t get shared. I am guessing I am not terribly alone in that. 

That being said, I know the importance and power in living a vulnerable life. And I don’t mean vulnerable as weak, but as in open, honest, real. There is beauty in us sitting in discomfort with one another and not rushing over the painful spots. 

The loss of hope within relationship is really hard. And I literally have paid my counselor weekly mainly to walk me through that for the last several months.  Today he got somewhat uncomfortable as I shared the feelings I had this week. The sadness and loss I have begun to process. The grieving that comes with the loss of hope. And in his discomfort he challenged me to try again.  I really needed that.  The challenge from him came with me sitting up a little straighter and telling him No. Of me reminding him that I had strongly shared my desire for reconciliation, for a chance to walk through the hard places and Lord willing come out still kicking. And that just wasn’t a mutual desire. And so for me to step back and be okay with that is where the growth is happening.  He recanted his urging and backed me up, and also commiserated with me on how awkward the discomfort in this situation is. 

It is uncomfortable. It is a refining fire. 

I will surely remember this season as one of hard relationships, but I think more than that I will remember it as a time of huge growth. Of more fully stepping into who I am, and resisting the urge to put the 100 foot wall up when I get hurt.

In my last blog I mentioned speaking at a conference this fall, and the talk is titled “Grieving the life you planned, in order to step fully into the life you have”. I love the idea of that, and it has been a real things for me.  And had no idea exactly how to speak to that.  And today I got a little clarity. 

When things suck. When hope dies. Instead of recoiling and shrinking back to the place of “I’m fine, I don’t need anyone anyway” or even “see, this is what hope and trust gets you!” Instead of stuffing it all inside- I HAVE to stand in a place of grieving and vulnerability. It does nothing for me to close up, self protect (which I happen to be a master at) or write people off.   I truly believe people are doing the very best they can (mostly- there are exceptions to every rule). And this is no different.  And that calls for love from me. A search for understanding. And when that wounding creeps up, and I feel my cheeks start to get hot, and my eyes begin to sting holding back the tears- it means stepping into a place of forgiveness over and over and over again. 

And when I fall into the lie that I am hopelessly flawed, that my strong personality, and intense self is somehow lesser I will remember this. 

God created me to be uniquely who I am. I am always working on self growth and to understand how I can be better, love better, and see things from the view point of others. I am a damn good friend. I will fight to the death for my people. I will send words of encouragement, and little gifts to make your day brighter. I will love the heck out of you. I will watch your kids  (even though that is totally not my jam) and I will ask you the hard questions. I will show up even when it is hard, or inconvenient. And more than that, I will fight to continually work things out for as long as you are willing. Even if at times in my own brokenness it is less than perfectly executed. And I HAVE to rest in that. Because I believe fiercely in this sisterhood I speak so frequently of.  

I am committed to walking out this grieving and not let it shut me down. It’s not easy, and it’s not fun. But it is “for good”.

And I will leave you with THIS- Broadway’s best outlook on this whole topic.

Love,  La

Well Hi there!

How about that for a writing hiatus? Just shy of one year. And what a year it has been!

This year I took time to get healthy. And I guess that involved not writing a whole lot. In the past writing has been a way to process for me, and well I did SO MUCH processing this year with my counselor and then on my own that writing just fell to the wayside.

I’ve learned a lot about myself via above mentioned counseling, as well as the enneagram, have you heard of it? It is an amazing tool and I would highly encourage you to go take a test and dive into it’s wisdom. Some of the tools I used were This free test. The book “The road back to you” as well as “The Path Between Us” and the Ennea-app (available from your app store).

This year I started a small business selling the Unicorn Tears face creams jk- it’s Rodan and Fields, but it has allowed me to dream a little bit. Don’t worry I’m not gonna turn this space into one big Rodan & Fields advertisement. However- I do want to share how it opened me up to dream a little bit.

For the last while  I have carried the insurance for my family. The hospital I work for has great benefits, so I knew I could not ever quit my job or even reduce my hours. However, in the last six months several things have happened. 1. I started my Rodan & Fields business and realized I might have a viable money making option that is a bit more flexible. 2. Emmaus qualified for a medicaid waiver which means due to the nature of her chronic disability we have been able to qualify for medicaid for her. Which is a HUGE win.  If you haven’t heard, having a child with complex medical needs is EXPENSIVE. So the fact that our state is willing to share the burden of that cost with us is a pretty big deal for our family.

When we had Emmaus I had planned to be a stay at home mom, and quickly we realized that likely was not in the cards for our family. As we definitely would need my income.  So now that those two things have changed, and I might actually have options it is let me dream a little. I actually love working, but this has just let me think creatively about what that work could be.

I have fallen in love with sharing our story. Credit it to too many hours of watching Ted talks, or listen to Brene’ Brown books and the fact I am a weirdo and love public speaking-  I have been sharing our story by speaking in front of large groups.  Sharing with others about living with reckless hope among the hardship of life has been AWESOME. Talk about thrilling (or terrifying if you like most of the world hate public speaking)! This world is a really broken place, and there are so many things we have to grieve along the way. And we have a choice to hold onto hope while we stand in, and endure our grief. I have realized that climbing the ranks at the hospital that I work in is not on my agenda. Instead, I want to do as much work with the TS alliance as I can. I want to speak frequently encouraging women, health care workers, and families of children with special needs. And while none of those arenas are jumping up and down offering to pay me (yet), working my Rodan & Fields business (while still doing a bit of nursing) might make that a possibility.

I actually just had to write a bio (I know, I’m big stuff now, huh?) and submit a headshot for a speaking engagement I have coming up this fall. Wanna see?

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Laurisa Ballew is a nurse by trade and mother to a special needs child by fate. She fiercely believes hope and grief walk hand in hand in life, and that storytelling is the universal language that connects us all.  Laurisa has three daughters and writes about the constant humility of parenting in her blog Raising A Sisterhood. Laurisa has spoken for organizations such as The United Way and Children’s Mercy Hospital. This year she won the volunteer of the year award from the Tuberous Sclerosis Alliance. 

BTW- incase you were wondering, it is weird to write your own bio. And I look much cooler in that paragraph than I am in real life.

One thing that hasn’t change is that these girls of mine still humble me everyday and mothering them is the single most challenging thing I have ever done. And they are kinda great too.

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Good to be back!

Love, La