Showing posts with label sibling. Show all posts
Showing posts with label sibling. Show all posts

Friday, May 29, 2015

For the Days you Think you Just Aren't Good Enough

th (1)I woke up at 7:30 just like every morning, placed my feet upon the ground, but I felt heavier somehow.  My first thought was it must have been the extra cookies I had indulged in the night before, but I ate them with my eyes closed, so clearly those calories didn’t count.  It was something else and I just couldn't put my finger on it.

I stepped over my four year old son, who had weaseled his way into our room somewhere in the middle of the night, just like all the nights before.  He was absolutely angelic, like a cherub, rounded cheeks, red luscious lips, long sloped eyelashes, blond wavy hair.  Let’s forget the fact that he was still covered in tinged dirt smudges from the night before, and somehow made it into bed still wearing his day clothes.  Let’s ignore that little factoid for now.  Obviously he put himself to bed while I had my eyes closed eating cookies.  Wait, no that would make me look worse.  Clearly there was some kind of break in the space time continuum, or something else that makes me not responsible for that

I tiptoed slowly out into the hall careful not to wake him, but still dragging this extra weight I could not yet identify.  The further I walked the heavier it got, a strange little invisible weight it was.  I opened my seven year old’s door.  She was sprawled face down on a sheet-less bed, surrounded by a mess that looked as though a tornado had hit.  A tornado that had only touched down in her room? Very strange indeed.  There were bits of paper, tissue, books, clothes, and dag nab it my cookies, all around her.  Her tiny body the eye of the storm, the signal of a sleepless night in the world of autism, one that had clearly wreaked havoc on her little mind, and on my poor little house, again.  The weight pulling me down increased again.  With a deep sigh I tried to wake her.

“Time for school.”

“I’m not going,” she huffed out the side of her toneless mouth.

“Dear child, you are, let’s go.” I picked her up over my shoulder like a floppy sack of potatoes, her outfit in my other hand.  The invisible weight now pulling me down from behind, and the weight of her decisions crushing me from above, each step painfully difficult.  I make my way quietly back through the hall trying so hard to not wake any “angelic cherubs” unintentionally because Lord knows, they only stay that way in their sleep.  I make it all the way to the top of the stairs, potato sack still in hand when BAM, there at the bottom of the stairs is the four year old staring back at me, now looking like he is in deep need of an exorcism.  Seriously, how do these kids get through the house without making a single noise?

“Jelly sandwich,” he says, no “hello”, no “I love you,” no inflection, no emotion, just demands.  So it begins.

I breathe deeply, trying my best to release some of the weight that now sits on my chest, a temporary solution at best.  I flop the sack of potatoes on the couch hoping by now she has enough life in her to begin dressing herself, apparently not.  I begin drawing up meds for three of our four children, intermittently calling out things like “come on we need to get going soon,” “are you getting your shirt on?” “Please tell Mommy when I come in there that you will at least have your underwear on? Right? Hello?” Another deep breath for now.

empty-lunch-tray-clipart-1145096-Cartoon-Of-A-Happy-Boy-With-A-Messy-Jam-Sandwich-Royalty-Free-Vector-Clipart “Jelly Sandwich,” says the four year old.

“You will have to wait.”

“My catheter leaked all over my bed,” says the eight year old.

(Wait… where did you come in??? ugh!)

“Ok, I promise I will be right there.” I check the clock, five minutes until bus, you have got to be kidding.  I do my best to pull all the weight I am now dragging.  I move back into the living room to find that sack of potatoes is happily reading a book in her underwear.  I move in.  She stands like the girl from The Secret Garden ready for her maid to dress her, legs straight, arms out, head up, dressed in seconds flat.  We move through the rest of the routine, I feel the weight getting a little lighter for the moment.  She gets on the bus, I wave goodbye.

“Mom, my bed is wet,” says the eight year old.

“Jelly sandwich,” says the four year old.

As quickly as the weight upon me lessened it returned again.  “Hang on,” I yelled, instantly feeling guilty for my reaction.  I moved my way into my eight year olds room working as quickly as possible to help her change and change her bed, not an easy task with all of the medical interventions she has to carefully work around.  None the less, she had a clean body and clean hospital bed.  One task down.  The weight lifted again, but only for a second.

“Can I get breakfast, and can you get my backpack so I can get out of bed,” she asks?

All reasonable requests, but I realized at that point I had not woken up ready to deal with the demands of our everyday life.  It wasn't anyone’s fault, not mine, not theirs, some days it is just too much for one person to bear.  Having realized this I took another deep breath, gently pushed the hair out of her face, and whispered gently “please give Mommy a few minutes.”

I felt good about this and finally thought I had reset my day.  I worked my way out of her room having identified what the weight was.  I was feeling the burden of being overwhelmed, and simply not feeling equip emotionally or physically to handle my responsibilities.  Feeling like that especially when it comes to your children can cause an immense amount of guilt.  Nothing in my experience weighs you down quicker than guilt.

I stepped out of her room and closed the door behind.  Confronting me immediately was that curly haired boy with a burning desire for a jelly sandwich.  I picked him up and headed for the couch so that I could take a quick breather and continue trying to reset my day before it really got off to the wrong start.  As I sunk into the couch and held the warmth of my little man tight to my chest.  I felt some of the intense weight of the pressure of the guilt I was feeling ease up.  Then a voice unexpectedly entered my peace.

“Um, Mom, I overslept and missed my bus,” said the twelve year old.

(Seriously where do you guys keep coming from)?

36fc0f1c7237a533b2667c4f00422926At this point it was inevitable no matter how hard I tried I personally was not going to win at this day.  If on any level it had been allowed I just would have gone back to bed and ended the day right there, status; failed.  Clearly with; one, two, three, four children, three of which have special needs that was not going to happen.  I really had to pull myself together regardless of the fact that I wanted to let the weight of my stress pull me straight to the ground and throw a big stinking toddler tantrum at that point.  With a huge deep breath and a solid reminder that; my four year old jelly loving child had not thrown a tantrum, my seven year old with autism who had not slept all night had not thrown a tantrum, my eight year old who had to wait for a bed change had not thrown a tantrum, and the half grown boy running ramped to get ready waiting on his crazy mother who was considering having a tantrum had not himself had a tantrum, then how could I?

The fact is this life is hard, but this life is also beautiful.  We have children with special needs, children with typical needs, but we have amazing children no matter which way you look at it.  There are going to be really awful days amongst days that are really wonderful, and we can’t let the weight of those awful days drag us back from experiencing what could be waiting for us, if we just believe enough in ourselves to keep taking one more step.  There are so many days that I don't feel good enough, or strong enough for this life, but I am.  I know I am, because I did it yesterday and the day before that.  I can do it tomorrow too.

On all those days you don't feel good enough, just believe, and just take one more step.

Friday, December 12, 2014

Dear sibling to a child with "specialties": Let me tell you why you're amazing....

Hey there little friend,

I heard you are the sibling to a child with "specialties" and I wanted to write you a letter explaining why you have a one up on life.  I know your life might seem hard or different from your friends, but trust me you most definitely will be more prepared for this life than anyone else walking around this big ole Earth.  Let me explain...

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I heard that you deal with more than any child should, like having your parents spend a lot of time away from you.  You know they are taking care of your sibling, possibly bringing him or her to the doctor, maybe your sibling is admitted in the hospital often, they might be on the phone taking care of insurance business, or even physically caring for your sibling constantly.  I know my friend.  You see these happenings more often than not.  You see the love that your parents have for your special sibling and it is being embedded into your heart.  You see the patience they exhibit when caring for him or her and it is being buried into your soul.  You see that your parents never stop trying to get what your sibling needs and it is being ingrained into your mind.  You see your parents exhaust themselves making sure that your sibling and you are well taken care of and loved and you are learning from this.  You may not know it, but all of these "little" things are teaching you traits of how to be an amazing person.

I'm certain that being the sibling to a child with different needs than most is a struggle.  I know you have those moments where your heart stings with jealousy, where you are worried sick over your sibling, or when you get mad because you can't go to all the birthday parties you want to.  All of those times are totally understandable.  You have a right to be upset every now and then, but I can bet that you can think of some pretty cool things that you have in your household that your friends don't.  How about all the cool equipment your sibling has? Huh?  I know you've climbed into that wheelchair or played with his super cool assistive technology toys!  How about getting to see your sibling reach a milestone and that proud feeling that overcomes your body?   You get to experience a friendship that is like no other.  Your sibling completely and utterly trusts and loves you with a love that can penetrate the coldest heart.  They look at you with those beautiful eyes and know that you are there for them no matter what.  The bond you have is indescribable.  You are their sibling, their friend, and their protector.  Your sibling might not be able to speak verbally, but we both know that your hearts together carry on conversations that us adults could never possibly understand.  And I tell you what, we are so extremely jealous.

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Did you know that your parents watch you and your siblings interactions on a daily basis and their heart literally wants to burst out of their body with pride and love?  They see everything you do for your brother or sister.  They notice when you walk by and give them a quick kiss, stroke their hair, or give them a hello.  Your mom and dad love to witness you sticking up for your special sibling, or when you go out of your way to make sure he or she is included in everything. They quietly observe you as you help with therapies, put oxygen masks back in place, hold their hand during tests or doctor visits, or wipe their innocent little face.  Your parents recognize every time you perch yourself on the counter to help make medicines or bring them a diaper, a syringe, or whatever else they are calling out to you!  You do such a crazy amazing job helping your parents.  It surely takes a wonderful little boy or girl to do what you do on a daily basis.  I'm sure they tell you thank you, but sometimes if they don't just know THEY ARE BEYOND THANKFUL FOR YOU!

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But most important of all, my dear one, the reason you are going to ROCK this life- you know true love, you know true heart ache, and you know what is truly important.  You have lived a life that takes a strong heart and a strong mind.  You will mature much faster than your schoolmates (don't be too hard on them), you'll exhibit compassion that astounds others, you'll know more about healthcare than 95% of adults you pass on the street, and you will most definitely have a wicked sense of humor that will enable you to keep life joyful no matter what!  When you were introduced to your sibling with complex needs for the very first time, that moment in time is pinned in the stars, for it was then that your destiny was determined.  You will be an awesome human being and you are going to change lives for the better....all because you were the sibling of a child with specialties.  Rock on my brave friend!

All my love,

the momma of a child like you and your special sibling