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.
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!
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.
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.
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?
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.
The slow pace of summer days isn’t lost on me. In this “chronic life” we live “slow” is not something our schedule usually allows for. And still my “slow” probably would be super overwhelming to most. The TS walk planning, fundraising, appointment follow ups, seizures action plans, IEP meetings, those are just a part of my typical life. So while they are still present, opening up my schedule, intentionally saying no, planning ahead, leaving space for downtime all of those things have allowed for a bit of room to do fun things.
I never went berry picking as a child. I don’t even love blueberries. But it is one of my summer-must do activities with my girls. The drive to The Berry Patch is enough to let my soul relax. It gets me dreaming of country life.
Yesterday morning we finally made it out. I have to admit, it felt a little weird not to be EXTREMELY pregnant or have a crawling babe picking berries off the ground, peaking in and out of the bushes. And at the same time it was so fun to have my girls flit around from bush to bush.
Shiloh hastily picking, getting as many green as blue, spending her time comparing who had the most in their bucket, while congratulating the winner, and praising her sister and herself for a job well done.
Lennon patiently looking and picking only the true blue ones. She maybe only picked 25 total, but I guarantee her’s were the sweetest, most ripe of them all.
No trip anywhere is complete without an almost-two-year-old meltdown.
But even that wasn’t rushed, or hushed, but just gotten over in time and with the promise of THE BEST cinnamon blueberry muffins ever to be had.
A morning spent with zero expectations, no rush, and just sweet time with these two- it was what summer dreams are made of.
I feel the squeeze of summer’s end, new routines, and my ever growing girls pressing in. So I’m taking time to savor summer’s relaxed approach, their littleness, the fading baby chubb and toddler sentence structure while I have it here.
*It may seem like Shiloh is bothered by the sun, however- after I snapped this, she asked to see it so she could see the “HEWARIOUS” face she made. Kid cracks me up*
The American Dream is a national ethos of the United States, the set of ideals (democracy, rights, liberty, opportunity and equality) in which freedom includes the opportunity for prosperity and success, as well as an upward social mobility for the family and children, achieved through hard work in a society with few barriers. In the definition of the American Dream by James Truslow Adams in 1931, “life should be better and richer and fuller for everyone, with opportunity for each according to ability or achievement” regardless of social class or circumstances of birth.
I made my husband come home from work. I am not in a good place. I mentally feel unstable to care for our children and provide what they need in a loving, calm way.
For months I have been reaching out for help. And for months we have been jumping through hoops. Both with state supports and private supports.
I’m not quite sure how we got here. But I think I can honestly call it the “American Nightmare”.
My husband and I are hardworking, well educated middle class citizens. I am not saying that out of a place of pride, just to set up the reality of our circumstance. We both work outside our homes. We have taken the step to be extremely financially prepared and responsible. We have no debt besides our home, which is minimal, we buy cars in cash, and that isn’t because we just are so wealthy, but because we have worked extra shifts, and live on tight budgets and saved to get there.
Our first of three daughters was born with a rare, randomly occurring genetic disease. Nothing we could have prevented, predicted, or caused. In her six years of life we have paid around 45,000 on medical deductibles/out of pocket max costs all of which were primarily for her (This does not include our estimated 36,000 in monthly premiums in that time).
We have had some help along the way from friends and family who had extra and gave to us generously, especially in times of need. We have never been in need. We have never been hungry. And that is a great gift in our life.
In the last 18 months our daughter’s health has declined. A disease that isn’t necessarily progressive, has very much been progressive for her. 15 months ago a pneumonia almost took her life. The year following she had illness, upon illness, never with the same severity, but also with lots of complications, missed work, and sick days. This May another fierce pneumonia developed and luckily due to extremely aggressive and proactive medical care she was able to avoid an intubation. However, we came home with a huge process to care for her daily. Quickly upon returning home I realized we need help.
Never in her six years have I felt like we needed help at home. My husband and I are very capable. I am as luck would have it a pediatric nurse by trade. But after this illness I realized it is just too much. I should not have to be her private nurse. I am her mom. And while all mothering requires some nursing care, it shouldn’t require SKILLED nursing care.
And here comes the American Nightmare.
We need help, but it seems are unable to get it. I applied for help from the state through the department of disabilities back in February. Our “promised” respite care for July still have not been approved. We are waiting for a medicaid denial, a “30 day process” which I am told actually takes months, so we can apply for a medicaid waiver. This was also started months ago.
I reached out to our private insurance to try to get home nursing care to be told we had been approved, and then to be sent through a incredibly ridiculous ring of hoops that today it looks like we won’t be approved. We will appeal.
I am at a loss.
When I type all of this it might sound like I resent the work and cost involved with being the mom to a child with the type of needs my daughter has. And that couldn’t be further from the truth. I love being her mom. She is fun. She is loving, and she is also challenging. She stretches and causes me to grow. However, I also love mothering my other girls. And I cannot be a healthy mother to them all, a full time private duty nurse for our medically complex daughter, a nurse who works at an actual hospital (to provide our private insurance), and take care of the “little details” of life.
Let me just give you a few “little details” of today.
I have talked to our case manager back and forth to provide a run down for exactly why she needs home nursing. (This is a process that started three weeks ago and I am still dealing with).
During the time I tried to write out our “daily needs” I also attended to three kids. One of which I pulled out of the bath tub twice, reclothed once, took potty twice, found playing in the sink twice, in the toilet once, pulling on her NG tube about 45 times, I got her down from the top of the table, took her sisters cups away from her three times, and provided a snack. This literally may have been a total of 45 minutes. And when I say all of this happened. I mean- I was watching her, fairly well. But she’s quick and she’s determined. ANY distraction provides her opportunity. I honestly have no idea what the other two were doing. They were safe, I was listening for them, but I was focused on the one who needs constant care and dealing with our insurance.
I then moved onto getting her meds that I reordered last Tuesday, that didn’t arrive in full when I picked them up last Friday, and then they still didn’t have in stock on Monday evening. This is completely unacceptable, and left us without this morning’s dose. So I woke up with a high priority issue. In calling around GUESS WHAT it still didn’t arrive. And the pharmacist did us a “solid” by transferring it, and reversing the fact we picked them up in june and making it look like we hadn’t. So our insurance plan starts over in July. Meaning a med that was “FREE” since we had met our $1600 medication deductible for her now cost us $150. I asked her to “undo the reversal” and she said it is illegal to back-date prescriptions. UHHHH ONES WE GOT IN JUNE?!?! HOW IS IT LEGAL FOR YOU TO REVERSE THE FACT WE DID PICK IT UP!!!!!!!!
You guys. This is real. All of this. And it isn’t uncommon. I spend hours and hours a week dealing with this stuff.
We have friends and family that want to help. But what do I divvy out? Oh, can you pick up fighting for this state program, harass medicaid a little bit more to get our denial so we can move on and wait on another list for services? Can you call our insurance and figure out the appeals process for when this gets officially denied? Can you mother my two healthy children? Can you provide nursing services for Emmaus? Can someone follow up on the unset IEP for next school year? Fix her talking device, which is broken AGAIN?
I consider myself a pretty high capacity person. Someone who tries to be healthy, to be prepared, and who has some support and is able to cope pretty well. It is alarming that I feel this broken, that my attempts to get help when we need it have been such a fight, and have so far gone unanswered. I know I am not the only mom of a medically complex child fighting this battle.
This post isn’t meant to be political, or pitiful. But to really say this system, both public and private is broken. It feels helpless to have almost no control, to be fully relying on these broken systems because of something that was just a chance happening in life. The funny thing is that that in asking for help, trying to be preventative, the systems fail, but I’m sure our insurance covers psychiatric care for when my caregiver fatigue/mental breakdown is just too much to handle. Welcome to my American Nightmare.
I missed the memo that becoming a parent would 1. be a fiery pit of imposed humility and deep self-reflection. And 2. I would become a servant. I thought it would be playing with my kids, fun activities, some cooking and cleaning, but that my kids would naturally have a healthy fear of me and thus pretty easily fall in line when I calmly corrected their behaviors. I also imagined a lot less sickness. And poop. There was definitely less poop in my naive scenario.
Are you laughing yet?
You guys. I am bossy. I like to be in charge. And yet, that is just not the reality I find myself in.
I spend most of my days reminding my tiny humans to say “please” before they make their next demand.
And you know what? My kids do NOT respond well to me just telling them what they should and shouldn’t do all the time. They listen, kind of, but I just don’t see the type of change I want. It’s basically “in one ear and out the other”. But you know what they do pick up on? ANYTHING I do wrong. When I lose my temper. When I am angry, or gasp- when I cuss.
Recently Shiloh, mid meltdown, stomped down the hall yelling “I don’t even care dammit”. YEP. I am killing it with this whole parenting gig.
So I’ve decided to change things up a bit. If they pick up so easily on my bad behavior, could the same be true for my good?
I keep thinking about how Jesus, at the last supper, cleans his disciples feet. He is GOD. mmmkay. GOD. And He served them by doing the lowliest task. I hate feet, so the yucky servitude of this task isn’t lost on me.
{Even if you don’t believe in God- Even if Jesus’ isn’t your Jam. Historically speaking, He was a guy who did relationship pretty darn well and was a natural leader. And anyone who impressively executes a skill set, I feel like it is worth looking into how they accomplish their success. So maybe just hang with me a fewmore minutes if you aren’t bored.}
From John 13. When he had finished washing their feet, he put on his clothes and returned to his place. “Do you understand what I have done for you?” he asked them. “You call me ‘Teacher’ and ‘Lord,’ and rightly so, for that is what I am. Now that I, your Lord and Teacher, have washed your feet, you also should wash one another’s feet. I have set you an example that you should do as I have done for you. Very truly I tell you, no servant is greater than his master, nor is a messenger greater than the one who sent him. Now that you know these things, you will be blessed if you do them.
How transformational might my mothering journey become if I follow this model of serving my children, of believing just because I am older, more experienced I am not necessarily “greater”? How might it change if I take the time to model thankfulness, patience, and apologizing to them when I royally mess up (cause that happens daily)
Jesus had high standards. But he didn’t go around chastising his disciples because they were doing it all wrong. And man did they get it wrong. He didn’t micro-manage his was into leadership of them. He didn’t yell at them when they didn’t listen.
He met them where they were. And invited them to follow him.
Gently guiding them He assertively, but lovingly invited them deeper into relationship with him. He didn’t demand their respect to validate his authority in their lives.
Patiently He invited them to step into relationship, over and over again.
Gospel parenting y’all.
(or maybe just intentionally leading by example)
Instability, fear, shame come between people when the relationship is broken. And when you are parenting tiny humans the breaking of relationship comes about 100 times a day! We live in a society where shame is such a motivating factor. Where trust has been lost, and fear rules. I refuse to let those things be the prominent experiences for my girls, at least in my interactions with them.
With broken relationship, I have found it vitally importance to reach out to the “guilty party” to invite them back into the relationship. Jesus Modeled this well too. When Peter his nearest and dearest totally bailed on him during a crucial time- claimed to not even know him! And guess what- Jesus didn’t wait around for Peter to come and make things right, Jesus took the LEAD and invited him into relationship once again.
It is so easy for me as their mom to just see the fit being thrown, the bitter words escaping their lips, or the disobedience and punish/correct those things. But they aren’t the PROBLEM!!! They are a symptom of the problem. The root problems I have too- but just react too differently.
What would happen if instead I can have the ability to see their disapointment in a situation, recognize when they are tired, hungry, jealous, their lives feel out of rhythm, or they had too much freedom. And then give them tools to better handle those things.
*I’m not saying the tool won’t be alone time in their room to figure it out (or another punishment). But isn’t that a valuable lesson in itself? To learn to retreat when you feel out of control, step back and figure out what is happening to your emotions?
What if I took on the role of serving my children willingly, dying to my natural tendencies of trying to run the show?
Humbling. Parenting is Humbling. These tiny human sponge children repeat what is modeled to them. And there will be so many things influencing them before they are on their own. I want to make sure what I am modeling speaks loudly.
Anyway- I’m gonna give Gospel Parenting try. I’m sure it will be a humbling try at best.
