Shoe Fall, Don’t Bother Me

The weight of always waiting for the other shoe to fall is exhausting. Waiting for the “what if” to happen and always being on edge knowing it IS coming…. an ER trip, an ambulance ride, a hospitalization that could possibly be the final curtain call on your child’s life. These are things “normal people” don’t have to contend with. For my family, we are always in fight or flight mode, whether we want to be or not. I literally carry an ambubag around with me waiting for the moment I have to use it in an attempt to save my son’s life [again]. For families like mine, this is just a typical, run of the mill day of the week. Nothing to see here…

I mourn the loss of enjoying my kids’ childhood. I miss it dearly. I see parents around me who are actually just enjoying their children. They’re taking them to ball games or amusement parks, staying up late watching movies, going to a skate park or a concert. Just enjoying life alongside their children.

My child is work. I’m working nursing shifts. My son’s existence requires 24/7 care. An actual nurse works here in my house and makes a full living and receives insurance benefits because my son exists. I don’t say that to complain; I say that to emphasize that keeping this particular human being alive is work. It’s a J-O-B. Well, more of a volunteer gig for me, but still.

The unfortunate thing of it all is, my other two kids feel the consequence. I can’t fully enjoy their childhoods either. I’m so preoccupied with wondering if I’ve given all of Hayden’s meds, if it’s time to cath him or time for a feed, time for his breathing treatments, time to administer the bowel program, remembering which phone calls I need to make for the day for refills, appointments, dealings with insurance companies.

Everyone has their own problems. I completely understand that. And though mine are so much more intense, I do recognize that no one’s life is perfect and no family is perfect and pleasant and fun all the time. But I would venture to say, for the typical family, the opportunity to have fun easily is more feasible. Our family does have fun, but it is work to master it all. Yet we do it. Because we want to enjoy life, no matter what it looks like. Life is a gift and we try and treasure each day we’ve been gifted and use it to the most of our ability.

“Many are they who say of me, ‘There is no help for him in God.’ But You, O Lord, are a shield for me, my glory and the One who lifts up my head. I cried to the Lord with my voice, and He heard me from His holy hill.” Psalm 3:2-4

Looking at the Bright Side is Causing Me to Go Blind

I am not a self proclaimed pessimist. I feel more like a sincere realist who just leans toward the reality of how hard life is. For the sake of your feelings, though, I do my best to comfort you. I don’t want you to worry. So when I share with a friend or acquaintance something difficult our family is enduring, I like to tie it up with a cute little bow like, “It’ll work out” or “It just is what it is” or “What can you do?” and then *insert cheesy smile here*. That’s just my M.O.

 

However, lately, it’s exhausting. I don’t think God meant for us to walk around polishing up crappy situations and faking like it’s ok. Sometimes, life is hard. Sometimes, circumstances suck. Sometimes, it’s just not fair. And it’s ok to say that. That’s what makes it life. I guess experiencing the bad and the good in life is what makes it beautiful. But that doesn’t make it any easier to endure. I believe the hope I have in Jesus is the only thing for me that makes it remotely bearable. Dare I say, Jesus can relate? I think He knows what it’s like to be in a circumstance that sucks. And I think He knows about something in life being unfair. He gets that living on this earth is hard. That’s what makes Him relatable. He already did this. For us! And thank God He provided us a way out and a hope and a future.

 

Our family’s Struggle Du Jour is related to Texas and the changes it is making to its Medicaid program. I realize that this sort of stuff is a snooze fest to people who aren’t directly affected. A decade ago that would’ve been me. I would have felt bad for someone dealing with it, of course, but then I would’ve gone on with my life and never thought twice about it. I don’t get that “privilege” any more. I am right smack in the middle of it. I find myself again in a battle I didn’t choose to fight. And it’s really, really easy to want to just wallow in it and get down in the dumps. But surely that’s not what God wants for me. I think that’s what the enemy wants. (But he already lost the battle so he’s pissy anyway.)

 

Traditional Texas Medicaid is transitioning to a Managed Care Organization which, in a brief synopsis, means the state is privatizing health care coverage to a for-profit company (for us – our choices in our county are Children’s or Amerigroup). My son has TWENTY FIVE doctors, medical equipment companies, pharmacies, nursing agencies, and respite agencies. I am “blessed” with the joy of calling each one of them and asking them which MCO they’ll be accepting. Then I get to use math, or maybe it’s statistics?, and take an average of which MCO – either Children’s or Amerigroup –  has the majority of our specialists and then pick that plan. The rest of the doctors we need? I guess I’ll just have to choose new ones. (Great continuity of care, right!?) There are 5,000 sweet, precious children in Texas on a medical waiver, MDCP, just like Hayden who are doing the same thing. And we’re fighting like crazy and doing all we can to fight this change and feeling completely ignored by the state of Texas. At times like this, looking on the bright side of life is the last thing I’m interested in doing.

 

For me, I could easily lose myself in the fear of the possibility of having Hayden’s nursing hours taken away. The first thing that will happen when this switch is forced on us is a new assessment by the MCO and in that, the effort would be to “cut costs” – I mean, this is a for-profit company we’re talking about. I just can’t imagine their goal is offering us all of the coverage we’re used to using over the last nine years. The unfortunate thing is, we only have one nurse at this time working with Hayden. We are approved for 24/7 coverage. But we have one nurse, due to staffing issues and low recruitment by our staffing agency. That means every single night of the week, Ryan and I take care of Hayden while he’s on his ventilator. We administer his bowel program every morning at 5:40am. Every single night. Every single morning. And one day a week, during the day, I care for him and our other kids alone. And two days a week, during the weekend, Ryan and I take care of the kids as a team. Hayden needs a one on one nurse with him 24/7. A doctor said so. But there’s just no staff at this time, and so as parents, we step up and take care of our child, just like you would do, too. My biggest fear, though, is that the new MCO will come into our home and say, “Well, you’ve been fine since July without 24/7 nursing help so, you’re good without all these ‘unnecessary hours’. *DENIED*”

 

I know I’m not supposed to have a spirit of fear. God told me that in 2 Timothy 1:7 when He said, “For God has not given us a spirit of fear and timidity, but of power, love, and self-discipline.” I just want to be very honest in this moment, and maybe I’m the only one who will say it out loud, but do you know how HARD that is?? Maybe it’s just me. No? It is hard to trust God and just “know there’s a plan.” That is a very difficult path to walk. I’m not sure I have any answer for that except to just call out to the Lord. I have no other tips or advice. No special meditation mantra or some self-help book that will give you the strategies you need to “conquer fear and be brave!” Sometimes, the only the thing left to do is to hit your knees and cry. Literally. He is your Father. Your Dad. He’s so sad for you when you’re sad. He hurts when you hurt. He knows your heart is pounding in your chest and you’re feeling anxious. He understands. The good news is, He can see you on the other side of this valley. He can see you on the mountain top. And the thing is, He’s the One who can give you the boost to hoist you up the side of the mountain as you claw your way out of the valley. It may be that I spend the rest of my time on this earth in a valley. Truly. I may always have struggles and never feel I’ve reach my “mountaintop” of peace and freedom. But, beloved, if your trust is in Jesus, I assure you, He will take you to the mountaintop. And it will be for eternity. And these trials of this world will just make the view from the top of the mountain so much sweeter because you’ll appreciate the heck out of it!

 

So, if you’re tired of looking on the bright side that this life has to offer, I am with you. Thank God there’s a calm after this storm. Lauren Daigle has a song with lyrics that say, “When You don’t part the waters I wish I could walk through, When You don’t give the answers as I cry out to you, I will trust, I will trust, I will trust in you.” I’ve been through some waters I did NOT want to walk through and for the life of me I couldn’t figure out WHY God would want me to walk through such nasty, muddy, gross waters! But all we can do is trust in Him. And try to be honest with each other when we’re hurting and when life is hard. We can’t win ’em all. But we can love on each other when we’re in the valley.

 

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(If you want more information on the fragile children being affected by this Medicaid change and for ways YOU can help, visit protecttxfragilekids.org or follow @fragilechildTX on Twitter.)