Monday, May 31, 2010

The little boy in a wheelchair

Asher goes to therapy of some sort Monday- Thursday.
Every morning we pack up, get in the car, and drive to therapy,, pull in unpack, and walk into therapy.
Every Tuesday we walk past a 13-15 year old boy, that just sits in his wheel chair,,, he sits on the curb with his nurse, and waits for the doctor transit bus to come get him
The lil guy appears to have endured severe brain damage, he is paralyzed, and his mouth hangs open, his head doesn't move,, and although his eyes so move, it is difficult to tell what lies behind them.
The first time I past him going in, in a huge hurry,, but noticed he was sweating, it is hot here in florida, and he was outside in the hot sun waiting,, i instantly thought about Asher in his car seat, and my constant quest to keep him cool.
The second time I past him going in,, I thought he made a sound,, so I stopped and smiled at him,, and said "hi",,, no sound,,, but i stood there anyway,, and carried on a conversation,, asked him how he was today?? ( no answer) Had Asher wave at him,, and tried to get asher to tell him "hi". No answer,, although I thought for sure I saw his blue eyes sparkle....
The little boy is someone who in the past I would probably walk past, and feel bad, or uncomfortable, or worry that i was staring so i wouldn't look over,,, don't lie you all do it.... you see someone so disabled it is shocking, and although your heart feels compassion,, you just don't know what exactly to do,, with your eyes, your voice, anything, it is foreign,, and a slight reminder to be thankful,, but also a slap saying this could be you, or your child,, life is brutal!

Now imagine those feelings, and multiply it by 50, there, now you have my feelings the first time I saw him,, I was looking directly at would could have, and in reality should have been my son in 13 years,, Asher was a breath away from being either dead, or confined to a wheelchair with little windows to the world being all he had to communicate....... My heart actually had a small seizure when i saw this little guy,,, and i felt so confused, and literally scared.... Asher has more surgeries to come,, and in reality there is a chance he could stroke, a good chance, and there is a chance he could be medically very similar to this little boy.... So here i am faced with two options,, ignore, and pretend, or confront, and love,,,, i chose to confront and love,, yes when i talk to him it scares me,, because i envision Asher sitting in the heat of his wheel chair, and i feel such pain thinking about it,,, but that very vision is what inspires me to love this little boy that I don't even know....
In a way he reminds me of Asher, and the fact he sits all alone makes me want to wheel him home and take care of him,, although not a reality it does make me feel connected to him to carry on my one person conversations, and to pray for him everyday,, and to be thankful for the path Asher is on,,.
It is interesting how an uncomfortable feeling once confronted, actually has meaning, and quite possibly a purpose,, it just takes a moment to stop, listen, and then say hi!

Thursday, May 13, 2010

A lil "Mercy" not so good for the Memories

I watch the show "Mercy" on NBC,, love it..... until the last episode.
For some reason,, they brought up the idea of doing a craniatomy on a patient,,, and it brought back a wave of emotion.
I have, and always have been afraid of Brain surgery,, the very thought of it terrifies me to the core,,, and then the ONLY way to save Asher after all he had been through is what,,? a craniatomy.

I have worked out in my head the "goings on" in the O.R during open heart surgery,, and can handle it,, my mind has never wandered, or probably ever will wander to what happened during Asher's brain surgery.
When he left for surgery i was under the impression they would tap in a tiny hole, and do something that way, kinda like a cath for the brain..... when he came back he had a slice going at an angle from the middle to just above the temple of his tiny bean head,, they had shaved off his hair in the front,, his head was so swollen I could barely recognize him,,, the thought of throwing up came to me,, but since i had done that for an hour while he was in surgery,,, there was nothing left.

I get the fact that without the surgery his brain would have swelled to the point that it pressed on the stem,, i get the point that the only reason he was alive and made it to the surgery is because he had a "baby" head and had "room" for the brain to swell,, but was out of room, and needed help.
I have had a difficult time forgiving the PA who first looked asher over ( on a saturday) and told us he would NOT call neurosurgery he thought the swelling would go down on its own,, lol,, yeah that would NOT have happened, basically he made a fast judgement and didnt think given asher's condition at the time and defect it was "worth" it.. He is a bit slimy,, dont think after all was said, and done he could ever really make eye contact with me,,, i hate that,, if you cant look a mom in the eyes and say you did your best,,, then well, slimy,,.lol

I guess I am thankful for the "Craniatomy",, but at the same time, hate it, and really hate hearing about it.
I hate what Asher had to endure, but love that he made it through.
I hate the idea that Neuro was at one point ready to give up, but I love that God put our Heart Docs,, Asher's protectors on the job, and nipped it in the bud.
Our speech therapist told me today, that when she first learned she was getting Asher a Hypoplastic left heart ( which in general are a bit slow due to long times in the ICU, and lower oxygen levels while developing) buuuuut a stroke victim as well,, she thought for sure she was getting a baby close to a veggie,, and then walks me, carrying Asher,,, today he ate his baby food while working the handle on a farm toy to make it spin, and oink, or spin, and moo, or spin, bark... the speech therapist looked at me and said "for a "normal" 9 month old he is a genius, but for what he has been through he is super genius,,, he is nothing like he looks on paper."
For a brief moment I was sad,,,, she never saw him before surgery at a 12 weeks old reaching for toys,,, she never heard one of our favorite ICU docs rave about how smart he was, and beam with pride,,,, he is really good, and i am thankful,, but a part of me hurts and has to grieve for what he was, and what now he has to overcome to get to.
Wallace has told me over and over, and said the day of his brain surgery " at least he is still with us, we will deal with the rest, whatever come."
I agree, at least he is with us, and we are ready to overcome!
Asher is not getting left behind,, if that means therapy every day with tue, and thur being two a days,,, then so be it,, we are fighting!

Friday, May 7, 2010

Home away From Home unless you are an armadillo

Home away from Home for many with sick children in the hospital is the Ronald Mcdonald House.
This idea works for some, but not for me.

My personality although outgoing, is somewhat like that of an armadillo,, i scurry around doing my thing, and as soon as danger, or an obstacle arrives, bam, into my shell.
Do I peek out and ask other armadillos for help? NO
This strange aspect of my personality has been present since I was a little girl, my parents would tell me I could go to them for help, and yet I seemed to take each one of my problems, and tuck them away in my shell.
Stewing away, trying to get a resolution, making myself sick with worry,, alone,, and yes, sometimes thinking my shell hid even God from seeing my issues.

I love people love to talk, love to listen, looooove to be social! I know many that probably at one point, or another have wished I would stop talking (:
However I am intensely private about certain things...
When Asher was in the hospital, is health was one of those "things"... i would update my friends on facebook, prayer warriors,, and discuss with family, and his health care workers the happenings of Asher's struggle,,, but never found the need to approach "strangers" with the plight of my son.
This was not the case of many living at the Ronald Mcdonald house. In fact they had a very opposite way of dealing, it seemed as if a majority of the folks residing at RMH would gather in the kitchen and trade war stories... I stopped taking the elevator for fear of being "cornered" and someone just dumping their childs health issues directly on my already heavily burdened lap.
There was always the people that I can only compare to cancer,,, like little evil cells spreading negativity to all who would listen.. Complaining about each doctor, or nurse that came in contact, just unloading all guilt for any misfortune onto anyone that had come into contact with their child.
The RMH was to be a place of rest for the weary,, close to the hospital, so the need to leave a sick child was no longer an issue.
Yet very few used it as such, it was like a "cheap" hotel, to gather, and socialize,,, with the random visits to the hospital, then back to their new "friends" for some poker in the RMH kitchen.

Wallace and I endured 5.5 loooooong months of living in the RMH house, and for it I am thankful. I could just walk around the block and see Asher, not drive an hour back and forth.
There were a few "emergencies" and living at RMH made it possible to be by Asher's side in minutes!
Wallace had a very difficult time with the lack of cable hook up to each room (: we brought a tv, and dvd player, and would watch season after season of you name it,, but he missed his shows.
Wallace showed amazing patience with all those living at RMH, he was able to listen, and even provide guidance to those around him, in the midst of his own pain,, for that i will always admire him.
I however really struggled living there, it felt like i lived entirely in my shell, would roll out of RMH to the hospital, and then tuck, and roll back into my room as fast as possible,, not making direct eye contact with anyone along the way.
Looking back, there are a few people I wish I had reached out to more, maybe I could have helped them, maybe not.
I dont feel guilty because I avoided the opportunity to help, in all honesty I truly believe I lacked the strength to take on extra burden.. no, the most I could do was lay in my lumpy sleep number bed,, that was broken, and pray for them,,, still tuck and roll, but prayed along the way.
I am making small steps in opening my shell, being married has "helped" there are certain things I can't tuck away.... but realized during our stay at RMH at the very least I let God in my shell, and that is a victory

Wednesday, May 5, 2010

The Fiasco called Mothers Day

Mothers Day has always been a bit of a sore spot in my heart.
With mothers day fast approaching,, it reminds me of the sore, and it itches, cant stand the itch.
I also think about several of my friends that have lost children, and have to wonder if they to feel the itch.
A lot of people don't know this, because a few years ago I gave up talking about it to often.. if found most of the time I didn't like the response I got when i brought it up, so it has been my very own cross to bear.

I have been a mother for a long time, actually gave birth to a little girl 9pounds 6ounces 22 inches long on March 12, 2001.
Her name is Jewel Elizabeth Couto, and she was delivered in the evening via emergency C-section.
I never got to hear her cry.. her lungs were never able to be cleared from blood that she had inhaled.
I was young 21, almost 22, and pretty much clueless up until the day I had that little girl.
I really hadn't known anyone that died, except my great granpa and he was old, so we all kinda expect that right??

This was a shock to me,,, it hurt,. I felt alone, and scared, felt as though there was some huge reason this had happened, like maybe deep down God knew I was going to be a crap mom, so he took her,,, or because i wasnt done with college, unmarried, and poor that he took her,, I had all these inadequacies that i was sure God saw, and I was sure that is why he took her home.
I struggled with depression, started drinking, and pretty much tried to pretend like it hadnt happened at all.
Like I was a normal 21 turning 22 year old without a care in the world. For a month, or so after I lost Jewel I would tell people about her,,, and get either an I am sorry, or wow, how long did she live??.. i always wondered about that question... still to this day don't understand why people ask it??? Like because she only lived for a few minutes it would hurt less or something??
As I lived my life filling hurt with activity, partys, dating cute guys, having tons of friends, in the back of my mind lived Jewel, lived a hurt that I just wasnt sure I could face.
With the help of a few friends, and God slowly i managed to find my way back to him, slowly I was able to examine portions of that pain, and slowly began to heal, began to mend fences, and began using what I had learned from Jewel to better myself, and the way I treated those around me.

Every year on March 12th my heart hurts, it has never gotten easier, never, and doubt it ever will. Those that know what happened call, send cards, flowers, and pray... it is a day to remember the little girl I got to hold, but never got to know.
I must say mothers day has always been somewhat of a sham,,, i hated it,, sometimes I would get a card, or at church would get whatever gift they gave to all the mothers,, but I always felt like it was taunted me, a cruel and very unfunny joke.
The day I found about about Asher's heart defect, also felt like a cruel joke?? I mean really??? A freak birth incident took my perfectly healthy daughter, and now my son has a health issue unlike anything anyone in my family has ever seen?? WHAT?!?

I was shocked because up until that point I was sure that because of Jewel passing, and all the suffering I had endured meant that was it, no more, would get to be a mom the easy way like everyone else... yep, thought wrong.
I remember walking out of the Dr. office the day we found out about asher's hlhs crying,, waddling out and crying, wallace went to go get the car,, my mother in law stood with me, and honestly if she had not been there I probably would have screamed!!! Can you imagine walking past a chubby little blond pregnant girl screaming and crying,,? I totally wanted to walk over to the brick wall and start kicking it,, hard just kick it and scream!! I was totally for lack of a better word PISSED, not even at God, just one hundred percent pissed off!!
I did not deserve this,, i had earned an easy pregnancy and a healthy baby,, the entire way home I cried, with my hands clenched, just pissed.
Got home went to bed, and cried, wallace held me, we both cried, he called my mom and told her,, i was so upset I couldnt even talk to my own mother.
That mothers day I was pregnant with Asher... we went to church,, i got the gift,,, wallace gave me my gift, we had dinner with his family. The entire day was spent thinking Mothers Day was still a sham, now more so then ever, now I have a baby in heaven, and a baby soon to join her in heaven ( i was just sure of it),,, what cruel joke is that??? I just knew it was because I would be a bad mom,, there had to be some reason that I would never be a "real" mom.....
This mothers day is creeping up, and it is bringing with it new feelings,, still some hold hurt... but with that hurt comes a bit of shock, and happiness, very bitter sweet.
I made it, Asher made it, we made it,, I can get a mothers day gift, and feel like I earned it, but this time I DESERVE IT!!

I know for sure I am not a perfect mom, there are times that i forget the most simple of things, like if i ate lunch, or to make a phone call..also washing my hair seems to be a problem... there are times when my poor husband has no boxers because I forgot to do his laundry, or mail has piled up because i haven't gotten around to sorting it,,, but let me tell you something... Asher has never run out of clothes, his laundry basket is always empty, he always gets a bath,, his room is always clean not a speck of dust,, his toys get cleaned every night, his stroller sanitized, have never missed a dose of his meds, he has never missed a doctor appointment,, he has never sat and cried in his crib,, never sits alone without his mama,,,,, I love that little boy, so very much,, and I feel like I deserve my mothers day card this year.!!

It is a little bit harder now that i have had Asher, and know the joy of feeling his warm little arms around my neck, and being so tired for all the right reasons,, because I know now the wonderful things I missed with Jewel.
I only ever got to hold her, she wasn't even alive,, i never got to feed her, change her diaper, and be her mom,, until now i was totally unaware of all i missed,, i had speculations of what it would have been like, but now I know, and it does hurt a bit more, and makes me miss her just a bit more. She was a beautiful, little girl , with long fingers ( very similar to ashers) beautiful pudgy cupid lips, a tiny little snub nose, and TON of blond brown straight fuzz hair.
She was simply gorgeous,,, I miss her very much.

I am very thankful for the chance I have now to be a mom, and pray for my friends this holiday that have lost their child.