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

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.

 “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)?

At 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.

My real blog post

This past weekend we went to my brother in law's 30th birthday party, and while standing in their kitchen I happened to notice their calendar.  It had two things on it for the entire month.  I stood in awe and amazement and perhaps a little bit of jealousy.  What I would give to only have two things on our calendar.  We have two calendars just to keep track of everything.  Our lives have become a hectic semi-organized litany of doctors appointments, OT/ST/PT therapy sessions, phone calls to medical equipment suppliers, coordination of services, driving to/from daycare and grandma's house, etc etc etc.  Throw on top of that doctor's appointments for me (with my own health issues), working full time, laundry, cleaning, cooking, dishes, grocery shopping, taking care of the house, picking up prescriptions, and trying to maintain a healthy relationship with my husband, and there are times that I don't stop moving until my head hits the pillow at night.  I do have to say that my husband helps out a TON with the housework, cooking, and cleaning, and I am very blessed to have him so I'm not doing it all alone.  Even so, I wake up in the morning completely tired, drained, and just plain exhausted.

I think sometimes its so easy for us to get caught up in the day to day activities of caring for our miracles that we forget to take care of ourselves.  We are so busy, crazy busy, that by the end of the day we are too tired to think about doing anything for us.  I think that's when the problems start to creep in.  We just go through the motions of daily life but don't really LIVE it.  Burnout, exhaustion, and functioning on auto-pilot.  Caregiver burnout is a very real thing, and should be taken as seriously as any other health issue.  Taking care of a miracle (depending on their medical situation) can be a full time job for several people put together.  Sometimes we try to take all of that on ourselves.  We have to remember we are human too, and can only do so much.  If we just go, go, go without a break, we will reach the point where someone needs to take care of us.   Sometimes, we need help.

 

And I think that's where I am.  My daughter is coming up on her 3rd birthday in December.  We have started the transition from Early Intervention over to the school district.  Meetings and paperwork abound.  We just switched formulas again, but she won't drink the new one either.  I count every calorie, every ounce she gains or loses.  Winter is coming upon us and I am nervous, will she be as sick as she was last year?  Will I miss as much work?  I am in a new job that is much more demanding of my time and energy, but we need the money so I have to do well.  My doctors are changing some of my medications around, and although I know that the end result will help me better, the change itself is always difficult.  My car is falling apart.  Money is tight.  Bills are everywhere.  My stress level is through the roof.  On top of all that, my husband and I started fighting.  A lot.  For years, 95% of our conversations have been about Elizabeth, and somewhere along the way we lost the ability to communicate about anything else without  a fight ensuing.  We have been so focused on our daughter that everything else went by the wayside.  We are now in couples therapy to work on our communication skills, and to try to learn healthy ways of dealing with the stress level in our lives.

 

So I guess the point of my rant is this:  so many times I read blog posts that are uplifting, encouraging, positive, optimistic.  Sometimes when I read those posts I feel like there's something wrong with me because I don't feel that way too.  Like, am I the only one who gets exhausted and discouraged and depressed?  Am I the only one who cries in the shower because that's where I can get 5 minutes alone?  I don't think I am ... so I wanted to do a different blog post and talk about how hard this can be sometimes.  How much other people just don't get it.  How stressed we are, how tired we are.  How overwhelming this journey can become.  How we acknowledge the strength it takes to be a MOM, but sometimes we just get so tired of having to be strong.  We want to relinquish our superhero status sometimes.  And how important I think it is that we acknowledge that.  The lives we live are not easy.

 

But at the same time, I want to stress how important it is to take care of yourself.  So often we put our children first and make sure their needs are met (as any MOM does). But in doing so, are we putting ourselves into burnout mode?  We need to occasionally take time for ourselves, and take time for our marriages/relationships.  What good am I to my daughter if I'm falling apart and exhausted?  What good are we to Elizabeth if we are fighting?  I have to put myself first sometimes so that I am able to be a better parent to her and a better wife to my husband.  We have to put our marriage first so that we can be loving, kind, attentive parents to Elizabeth.  Much easier said than done.  Although my husband and I are making a concerted effort to make time for just the two of us, and we are going to couples therapy, I have a much harder time taking care of me individually.  I am trying, though.  I go and get my nails done once a month.  A few weeks ago I got my haircut (first time in a year).  A little bit of "me" time.  I make sure I can make it to my own doctors appointments.  That's really it.  I know there is more to it than that, and I am working on taking care of me, so I can better take care of her.  I think we are all working on that.  But it's hard, it's really hard.

 

[caption id="attachment_6783" align="alignleft" width="224"] Me and my miracle, cuddling by the campfire one night when I was just terribly overwhelmed with it all, and burying my face in her hugs was all I could manage to do.[/caption]

 

So this blog post may not be uplifting, or optimistic, or enlightening.  It may not teach you anything new.  But this blog post is real, this is from my heart.  I want to acknowledge to all the MOMs out there how hard this journey is.  I have had a very rough couple of months, and I wanted to write this to let you know that you are not alone.  We all struggle, we all cry, we all are overwhelmed.  We all go through good phases and bad.  We get tired of being strong all the time, it's exhausting.  Never think you are alone.  You are surrounded by an army of MOMs who can relate to what you're going through.  Try to take some time for yourself, if you can, even if its 5 minutes a day.  Take some time for the relationships in your life so they don't disintegrate.  Recognize that its ok to have bad days, or bad weeks, but remember that it won't stay that way.  The one good thing about life is that it is always changing, so the bad we have today may be gone tomorrow.  Above all remember to take care of YOU, so that you can be the best possible MOM to your miracle.

 

And for all you MOMs having a rough time, I am sending love and hugs your way ...