Yes Dear, It Does Suck

While there was a time when I believed that it was very hard to raise an emotionally intact child with a chronic, degenerative disease…..and still do…..I am coming to the realization that it has never been harder than it is right now, when they are all teenagers.  So many things come into play….hormones, a higher level of understanding and recognition, thoughts of life AFTER being a kid living with their parents at home, AKA “what I want to be & do when I grow up”, and the list goes on. 

To further complicate matters, there is the ever-present DIFFERENT ways that all three deal with things.  It’s ALWAYS been there and it’s something I have pondered on more than one occasion….just how amazing it is that three children, all raised in the same home, with the same rules and parental involvement, with the same level of comfort, can somehow approach life so very differently.  It certainly goes to the whole “nature vs nurture” question, and proves, on some level, that our nature is just there and only partially influenced by the nurturing aspect.

That is NOT to diminish the effects of nurturing, don’t get me wrong, just shows that even nurtured the same, different people react differently to their situations.

In this house, I somehow have children that cover the entire range of possible reactions to the exceptional life we have been given.  And I mean, I have one on one extreme, one on the other extreme, and one who would likely fall somewhere right in the middle, at least most of the time.  The reality is it changes from time to time, or one moves into another’s position for a short time, but mostly, they do their own thing.  Mostly they make their mom seriously stay on her toes!!!

Madison is my extremely (almost abnormally) stoic child.  She tolerates it all, doesn’t stress about what’s going on (at least not outwardly and swears not inwardly either), responds to bad news with a total lack of surprise (I am Madi, what do we expect), and she has ALWAYS been like this, even as a small child.  We could dig for a vein, and poke her multiple times to place an IV and get little more than an occasional ouch.  In some ways, she rides this ride with absolute grace, and we could all hope to be as at peace as she seems to be.

Then there is my middle of the road child….at least most of the time….Chance.  Chance will complain and be unhappy about things, but has always very quickly come to peace with it, accepted it, and moved on.  There has always been too much going on in his head for something like medical crap to take up any of that precious space. He does though sometimes react emotionally to what’s going on, and generally speaking it’s when he comes to revelations about what something or another really means.  It’s rare, can be intense, but is generally short lived.

Then there is Abby.  My child who has done absolutely everything else opposite of how her siblings have, continues that tradition into adolescence.  Abby has always been an emotional child who wears it all on her sleeve.  You know immediately when she doesn’t like something being discussed…..she makes it clear that talking about anything medical, even when not involving her, upsets her…..she avoids watching medical shows on TV…..and not surprisingly, she deals with more anxiety, frustrations, and fears in general.  It is almost always intense with her, even when it’s something our crew considers rather minor with the perspective that we have.

What further makes this interesting to me is that this reaction each has is, in some ways, the opposite of what I would expect based on the level of intervention needed for each.  So while Madison is my most stoic, she is the one that endures the most regularly….while Abby is my most reactive, she endures the least.  And Chance is somewhere in the middle.  Of course, living it, I get that in some ways this is exactly the reaction I should expect from each based on their level of intervention.  Although, honestly, I am not sure we would have seen anything different had their roles been reversed.  It’s their personality, their make up, that lends itself to these responses.

Generally, just as I think I have some handle on it, the kids will change it up a bit and make me stop in my tracks.  A couple of weeks ago Madison came to me out of no where, wanting to know if she could take one more night a month off her BIPAP.  As it is, to maintain her sanity, we made the accommodation that she could take one night off a week.  She needed that night to look forward to…she needed a break.  While theoretically the BIPAP is helping her overnight, we have not been so fortunate to SEE a real difference, or for her to FEEL one.  There are multiple factors contributing to that, ones I have no control over (no one does), and when your 14 and HATE something, sometimes a compromise has to take place.  Looking back, I wish I had compromised initially with a night off a month, or every two weeks, but when faced with a stoic child that is absolutely distraught, you sometimes compromise more than you should. Anyway…..Madison had asked me about it one day and I told her I honestly did not have the time to discuss it at that time.  It was honest, but it was also so I had a chance to ponder the proposition. 

After a busy Saturday, a very worn out, tired Madison came to me Sunday evening to ask again.  I’d had some time to think and had come to the conclusion that I really could not, in good conscious, okay this latest compromise.  For one, she’s already off the vent 4 nights a month, which is likely more than is best.  Two, she rarely ever keeps it on all night long any way, taking it off in the dead of sleep completely unaware why or that she is doing it.  While she generally is at least getting 6 hours on, when we know she struggles the most in REM sleep, and we know that happens mostly in the early morning hours, that she is off the vent at that critical time is not good.  Finally, I really needed the doctors okay AND for Madison to not be in a tired, emotional place while making this decision.

Madison’s response was anything but expected.  My very stoic child who rarely complains and never cries, just sobbed.  And sobbed some more.  It was heart breaking, but I really couldn’t give in on this one.  Not at this time.  After a while of begging then sobbing, then begging again, she finally started to calm down.  She calmed down because, what little energy she had after a busy Saturday, was pretty much exhausted and you could see it in her face.  And just when I thought it was over (for the evening at least), she burst into tears again!!  When she finally calmed enough to speak, she explained that she had just realized it was Sunday night….our weekly Methotrexate shot night.

 “For the record Mom, I hate my shots too!!”

Very thankfully, this was something I could give in on…..it could wait till the next morning if need be.  She took the offer quickly and started calming down again.  My heart hurt so badly during it all, and all night long.  Yes Dear, it does suck.  Really, really sucks.

True to form, the following morning I asked Madison how she was.  She said she was “tired” which prompted me to say I was asking more how she was EMOTIONALLY doing….”Oh….I’m fine.”  And she really was.

Sigh.  I’d be whining, complaining and sobbing ALL the time if I had half the stuff she deals with going on, particularly when she has generally felt cruddy for a LONG, LONG time now.  But, that wouldn’t be living life, so I am very grateful she mostly can handle it all so well.

Several things have come to light as of late when it comes to Abby.  The first is, in her zealous attempt to not even allow a medical thought to enter her mind, she is ignoring a lot that’s going on with her body.  Things I need to know so we can do something to help.  Things that left untreated could cause some serious problems down the road.  I love that she can ignore things so well from the LIVING standpoint, but know that ignoring things can sometimes just make everything worse.  She still needs some guidance on when it’s something okay to ignore, and when it’s just not.  But that requires a LOT more conversation between the two of us.  She’s working on it….trying….and that’s all I can ask.  Abby will NEVER be my one to tell me it all, and she will ALWAYS keep it all “out of sight, out of mind” as much as possible.  We just need to find a happy median.  Someday I won’t be there to tell the doctors what all has been going on, and at this point, she’d tell them all she’s perfect if she could get away with it.

While I have come to the realization the last year that Abby is a tad bit ignored medically, her desire to ignore it all has contributed and I am realizing that more and more.  We both just need some work on this.

Of a more pressing nature, Abby goes through some serious cranky periods on a pretty regular basis.  And she can be seriously CRANKY!!  She tends to get herself into trouble at these times, and it’s only once she’s being griped at/punished for unacceptable behavior that she shares how tired she is, or how bad she feels.  There are several issues with this scenario……once in trouble, to then say you feel like crap feels like an excuse.  The thing is, I rarely question that it is what’s going on, however, it’s at that point too late for me to really back down.  I always tell the kids, feeling bad or not, if you choose to behave badly, there will be a consequence.  Second, I WANT to comfort Abby when she is feeling cruddy.  I WOULD comfort her, but she has always been one to act out rather than ask for some loving.  It hurts my heart though because I so badly don’t want to be griping at my child when what she really needs is her mommy to take care of her.  Finally, as I told Abby, I can see it now….she will be in her early 20’s and will, likely in the heat of some argument, tell me that all I ever did was gripe at her when she was feeling bad.  That thought KILLS me.  But as I told her, in that moment I pray I can remember that the way it really plays out is…..

She never tells me she feels bad TILL I am griping at her.

I wish it was obvious….I wish I knew when it was Abby being a stink and when she doesn’t feel good.  I want to comfort her….I want to empathize with how cranky you feel when your feeling bad…..I want to tell her siblings to be extra nice to her that day….I want to offer some extra hugs and maybe some snuggles.  But I just cannot tell usually, and she’s not real forthcoming in this area.  I am glad she doesn’t dwell on it, but I need to know sometimes.  Just need to.

We are working on a plan for both.

Madison is patiently waiting for her upcoming appointment with the Sleep Doctor/Pulmonologist where I have told her she can talk with the doctor about taking another night off.  I really don’t know what the doctor will say under the circumstances.  At some point we will not be able to reduce her time any more, and there is a very real possibility she needs MORE time, especially with how much she is struggling right now.  I wish I had some way to make this better for her.  I am incredibly proud of how well she has tolerated it.

She and I are both praying her arthritis stays stable between now and August.  Our rheumatologist has said that if we can keep her stable, with no more joints involved, we can start trying to get her off the Methotrexate injections.  She cannot wait!!  And I just pray daily she is not disappointed if things don’t go like we would like for them to.

We will be getting Abby a small journal where she can make notes about how she is feeling, particularly at times when she doesn’t feel like letting me know.  If nothing else, at least then we’ll have a better resource for determining how much certain issues are occurring.  Her perception of how much something is happening is very off, most likely because she so badly just wants to ignore it.  I have told her that she can write it down and forget it till the time comes we need to discuss it, but at least this way we know we are accurately conveying the situation to the doctors.

Personally, I am working on new ways to work with Abby and meet her more where she is.  I HATE punishing her not knowing pain and/or exhaustion is playing a part.  There is still a consequence to our actions, but it does need to be tempered sometimes based on what all is going on.  Mostly though, I just want to love on her more when she is feeling cruddy.

We will, no doubt, make the best of it when all is said and done but, sometimes, it really does just suck.