Tuesday, November 6, 2018

Politics, not really.

Being brutally honest here, I am struggling right now.  This is my reality, and might not sound pretty. Here's just a small sample of what I have on my mind...

Political ads.  They have invaded my home more than any previous election year.  I've seen them play four ads in a row, going back and forth between candidates, making it feel as if they are arguing in my living room.  I have three kids between 14 and 10 years old. I don't need any more arguing in my house, thank you.

I am maxed out.  Some days, just getting through the day is a major accomplishment.  My priorities are as follows (in no particular order):

All things Harlie.
  • Keeping Harlie well. This isn't as simple as it sounds.
  • Trying to remember all of the appointments I have to schedule and then get her to.  She has four extra appointments this week alone (and it is only Monday). Her schedule is bonkers.  Every day is packed with appointments/school/therapies, etc. with NO fun stuff.  If I wanted to make her schedule less hectic (which I would love to do) she would have to go without something vital, which clearly isn't an option.  It feels cruel to make her do so much, but then it feels cruel to not give her speech therapy, physical therapy or her education. All the while I get to hear other families "complain" about how busy their kids are with fun stuff.  Fun stuff they willingly sign them up for, pay good money for and enjoy watching them do whatever it is they do. I would SO love to watch Harlie be able to enjoy something - like she did with her swimming lessons. I miss that wonderful feeling so much. 
  • Learning and then making the best decisions I can when it comes to her education.  We just had her second IEP of the school year and I had to decide if they should initiate a full testing thing on her (lots and lots of testing). My answer was yes. Now we'll see how it goes... Got home from work the other day to learn that her vision screening at school was abnormal on her left side. It is the same eye that had a hard time recovering after being on the paralytic in the hospital for like 25 days. Awesome.  So, I made the appointment for her to go to the same place she went years ago and they said her insurance doesn't pay for routine eye exams. How is this routine if it is based on a problem?!  Whatever, will do what I have to and go from there.
  • Ordering supplies (on time so we don't run out of anything).  Our local DME company recently sold to a larger company that is in several states.  Yes, this has affected us directly.  I think this will be fine once all of the kinks are worked out.  But, change is HARD in the special needs world (can't stress this enough) and the different product brands and the way things work vs. the way things used to work has been really, really difficult and very stressful. For example, the pulse ox probes we have to use on Harlie every night only lasts a few nights (the sticky stuff wears out and the readers get yucky). But, they only send us like six for the whole month.  They used to send a brand that came with little stickers to use so you can use them over and over again.  The new brand doesn't have those stickers.  So, making them last is very difficult.  Again, we use them every night and if they come undone in the middle of the night, then it sets off her alarm and I have to get up and solve the stupid problem.  Oh, and by the way, the purpose of the pulse ox is to alert us if her heart stops beating, she needs more oxygen or if she can't breathe, so no biggie. Will work on fixing this problem, of course.
  • Insurance issues. This was "okay" for many years.  However, Medicaid made some major changes a year or two ago and it is BRUTAL now.  They farmed us out to various insurance companies and Harlie's docs in DC are out of network.  And I don't have the option to stay in network, because her ENT is there and considering her number one problem has been airway based, that's where she needs to be. They deny seemingly everything anyway, even in network.  This pic is from ONE, 7-page EOB I just received, which has the dates of service as Feb. 21 (the date of her LTR surgery in DC) to Feb. 26.  To put it in perspective, she was discharged on April 14th. 

  • If I could explain how this ONE EOB makes me feel, I would.  Keep in mind that I've probably received thousands of EOBs. She's had over 60 surgeries and has spent more nights than I can count in either a NICU, PICU or CICU.  She's been transported in several ambulances and a helicopter.  
  • Managing home health nursing and balancing those relationships with family and privacy.  Well, honestly, our nurses know way more than they probably want to - so I don't think it is possible to balance that, really.  Privacy went out the window 12 years ago.  Thank God I found some awesome nurses.  
  • Equipment issues.  We have been struggling with her wheelchair lately. it just seems like it doesn't really work for us. We have to carry a suction machine, supplies and an emergency go bag with extra trachs and stuff - all the time. There is no place to put such bag. And I have my own bag and this chair requires both hands to be on it. The other day I got coffee and had to push her and hold my cup at the same time. The struggle is real, people. And then I feel like we need two different kinds of chairs - one for smooth surfaces and one for grass and gravel.  For example, if we don't have a nurse to work during Murphy's cross country races, one of us can't go.  Taking her isn't really an option since you are on grass and gravel a lot. It is a terrible feeling to know you can't take your child somewhere because access just isn't possible. 
  • Her spinal issues - Kyphosis Scoliosis. It weighs heavy on my mind. I don't want her to have to have another spinal surgery! They are horrible and I don't want her to have any more horrible experiences. And I don't want her to have it before she's done growing. She's already so tiny as it is. But, it doesn't matter what I want.  I am going to try something crazy (because that's what you do when you love your kid and want to give her the best chance at avoiding something horrible) and take her to the National Scoliosis Center in Fairfax (which doesn't accept Medicaid at all) and see if there's anything they can do to buy us some time. That appointment is in a few weeks.
  • I could go on, but I'm sure you get the point. 
Our Boys.

Life has been a bit more challenging with the boys lately. I believe they are smart kiddos, but they don't seem to care to show it a lot of the time. They are not exactly highly motivated in their academics. I think this is especially difficult as parents when we appear to live in a bubble full of over achievers.  I mean, if you have a kid or kids with straight A's, who excel at every sport and extra curricular activity, congratulations!  

The other night, as we struggled with math with our 10-year old, I thought, why can't there be a balance here?  If we get Harlie, we should have freaking geniuses as our other kids.  Okay, fine, maybe that's over the top. At least give us self motivators!  Geez. 

And if I'm being REALLY honest, it isn't just math with Cooper. It is every.freaking.thing that he doesn't want to do that is a challenge.  So every time I turn around, I am in some sort of stupid battle.  I mean, showering?  When in the hell is this going to be a given??!?!  Eating?!?!?

And back to "fun stuff" for a minute, Harlie's crazy schedule affects the boys, too.  It means I am WAY less available to get them to their fun stuff.  So, they have been limited to one activity, each. It was swimming, but that became too difficult. So, now it is cross country through the Y for Cooper (fall and spring only) and running for Murphy, through his school. That's it.  They seem happy with that, so that's good. 


Yes, Mabel is making this list of things that are pushing me closer to the edge. I love her, don't get me wrong.  But she seems to have developed a sensitive stomach, or an allergy to her food.  Now that I think about it, I don't know why this should surprise me. Tom and I love food - all kinds of food. Of course we have three children who don't like to eat. And now one dog that has feeding issues, which so far, has required prescription food. UGH!  And she's super itchy. So, I'm going to have to take her back to the vet. Again.


So, back to politics, the thing that inspired this vent session. I don't have anything left to give to politics. I'm sorry.  Really, I am. My brain just can't learn what I feel like I would need to learn to make an informed decision on any kind of election.  My brain is full. I am an uneducated voter. So, why should I vote?  What kind of vote is it if you don't even know why you're voting for that person?  Seems wrong to me. So, I don't know what I'm going to do. I promise I will make sure to avoid Facebook on election day since everyone and their brother will be trying to tell me what to do.  Get out and vote!  

I don't care.  No, that's not true at all.  I can't care.  I just can't.  Which really sucks because what they do with health care (pre-existing conditions) and Medicaid is a big deal to us.  But, no one seems to know what the heck is going on with that. And just because you vote for one person who says they want what would be good for us, doesn't mean that good stuff will happen. 

And I have so little control over my life.  My daily existence is dictated by what Harlie needs, and what everyone else needs.  My needs are last (which is normal for moms, I suppose).  But, I am kind of tired of being told what to do all.the.time.  Especially by people who don't have any idea of what my life is like. 

So, go do what you want/can on election day.  Be happy you have the energy and ability to care. Just remember that not everyone is as lucky.  I'm going to focus on getting through the day as best I can and am going to try to forgive myself for forgetting about Cooper's parent teacher conference yesterday.  Such is life when you're pulled in too many directions all the time.

Thanks for the love,
Christy xo

Two weeks down, six to go.

Hi, I'm sorry it has been so long since my last post.  I have so much I want to say.  I've started to write this post several time...