Category Archives: change

change, children with heart disease, children's loss, chronically ill children, emotion, kid's medication, letter to my daughter, MS symptoms

"It’s Just Not Fair!"

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To my daughter,

I’m sure every parent feels like they hear “It’s just not fair!” from their kids a thousand times a year.  The hard part is when I find myself agreeing.

“Honey, you have no idea how much I agree.  No seven year old should have to take as many meds as you do first thing in the morning or in the evening before bed.  Then again, no young kid should ever have to live through all you’ve made it through or fear you will go through.  Try to remember you are the miracle.  What life gives is some times unfair, but what you do from that point on, is on you.  Take the meds.  I know it’s unfair, but do you want to be miserable?”

Saying all of this leaves unsaid your need to go through it all while in the process of  losing so much of the life you have known from visits with Blue a child you heard reunited with a biological family he feared… to your therapists with whom you took 4 months to open up… to your best friends (leaving for 2 years in a month)…With all of this on your shoulders, you begin a new school year.  Yes, life is unfair some times.

Maybe it’s because I had these thoughts, but for the life of me I just couldn’t get you to take your meds this morning.  Forty five minutes of silence (ah golden…if only the others complied too), stubborn refusal, deal making and finally deal breaking.

I get it, Dear.
Believe me!
I get it.

As much as anyone in the house, I get it.  Sadly the cocktail of meds is the best we have for your heart, emotional, and colon issues.  For what it is worth, I take my own cocktail of meds.  Your most common complaint is “You just don’t understand me!”  When you says this this, I almost always find myself wondering if you will mean it more or less as a teen.

Then I think how little I want my family to understand my symptoms and how different we are in this.  You long for understanding and seem to despair when nobody does.  I fear my family will understand because I don’t think they can without going through my ringer of symptoms in the worst moments on bad days.  I could never wish understanding on my family or any whom I love.

I do understand the original sentiment though.

It’s just not fair…and through it all, I am amazed at your will to give.  When you are down on days you have to take meds you just do not want, your biggest fit was reserved for not being able to give a gift to your friend leaving at the end of the month. When your biggest tantrum was a mere 20 minutes over having to wait a day to give her a gift you knew she would like, a gift to remember you for the next two years until back in America…that’s when I realized.

I have so much to learn from my kids.  Sometimes, there are things worth a good fuss.  Waiting till tomorrow seems an eternity to make happy someone about whom we care. After all, who knows what tomorrow may bring.

Love,
Dad

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change, father time, foster care, ugly bug ball, worries

All Time Undefeated


It seems I am so often writing about my experiences and how important I find the right perspective to be in dealing with the travails of the day.  As is so often the case, watching my kids and listening to them forced me to appreciate how hard maintaining perspective can be.  On Sat. O and A were playing out in the backyard on and around our swing set when I heard a scream followed by huge wracking sobs.  I ran outside to see what the problem was, and here is the discussion with O,
“What’s wrong?  What hurts?”
O: “It was a…it was a…It was a HUGE FLY!”
“I thought A was the only one scared of bugs”
O: “NO daddy!  You don’t understand it was a huge fly!”
“So if I stacked 100 of them on top of each other, would they reach your knee?”
O: “Daddy!  It was scary!  It was buzzing around me!”
(OK, this approach is not working)
“Ok, so it wasn’t biting or hurting you.  Was it like Buzz, the fly guy?  Could it have been talking to you?”
O, “NO!  It was scary and its eyes were ugly” with more sobs.
“Ah, so it was an ugly bug and a big one at that.  They can be scary, but you know what else they can be?  Do you remember the ugly bug ball?”
O, “No…”
A chimed in with a surprising smile on her face, “You mean the one in the song?”
“Yeah, that one.  Do you know with each dance party called an ugly bug ball, they name a king and queen for the ugliest bugs there?  Do you think the fly might get votes for king of the ugly bug ball?”  As they both looked excited, I suggested, “Why don’t you see if there are any other bugs out here that might get votes for king or queen of the ball?”
With that, terrified exasperation at the mere sight and buzz of a fly set off 6 hours over the remainder of the weekend flipping up paving stones to look underneath and combing though our flower beds looking for more to invite to the “Ugly Bug Ball.”
As good a part of the weekend as this was, there was a lot of difficulty as well.  I am not referring to the splitting headaches caused by 4 screaming kids.  I am not even talking about the long hours dealing with their worries, bumps and concerns of the moment.  All of the momentary issues, even the ones made worse with MS are but child’s play compared to the emotional gut shots.
We had to watch a kid we have loved and for whom we have done respite care for years go back with his birth mom despite being terrified of her.  I know we all have to learn as parents, but when her boyfriend isn’t taking care of him, we see her not talking with him as she drags him to the car and set him in the back seat (not buckling him to the car seat he needs).  We see him come back soaked in pee and terrified to go back because she will make him sit on the potty.  He even gets scared to see us holding underwear to give to the mom because she wants him potty trained ASAP.  He is not ready, and the fact he comes back to us each evening in different clothes than we sent him out in seems to argue in the same direction as his bad dreams and scared reaction to spending time with her.  When asked why he is scared, he never says.  When he comes back, it always seems to be in a euphoric state to be back in our home.  Our house is cool, and he is certainly loved as all of the kids compete for his attention, but why is our house so much better than where he has been the rest of the day?  In the end, all we can do is be thankful for the time we get to spend with him.  It is just sad that after tomorrow when he leaves our house, it is doubtful we will get to see him again.   At least as he goes, we can know all have benefited from the time he spent with us.  Let that be a salve against the hurt of seeing him go and the worries for his future well-being.   Our door will always open for him.
Thank you, Blue.
While Father Time sits undefeated upon his throne, all the conditions of today, good and bad, have the opposite record.  Therefore, if you are having a good day or have a chance for a good day like we had this weekend, make sure you enjoy it now. Conversely, if you are having a bad stretch full of misfortune, worry or sadness, take solace and bet on the undefeated champion to bring change.
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