Friday, October 15, 2010

New update on Asher, and where my heart has been lately

I haven't posted for a while,,, um things have been crazy, will summarize it.
Asher had is 1st b-day, the day after I had severe pain in my tummy, the day after that I had emergency surgery to remove a leaking, and infected/rotten appendix,, so was in the hospital for a week.
Then my in-laws moved to SCarolina, then we moved, not easy, but thankful for all the God has blessed us with.
Then we took a road trip to Ohio state, went to Athens my home town, saw my family, and church family, that was a dream come true!
I truly never thought i would ever have the chance to introduce Asher to my Ohio family, and church family, we have come such a long way, it is amazing.
The trip was hard on Asher, but he held up well, and I learned a lot about myself, and my boy.
We are both pretty capable, and it gave me a new confidence as a Mom.
Asher is in therapy Mon-Thur, he has three therapies on Tue, and two on Thur, he is busy, busy.
He is a little slow hitting certain milestones, but his therapists are beyond thrilled with where he is at, and say he doesn't even act like he had a stroke ( minus his lack of movement in his right arm).

I haven't posted lately, mostly due to being very busy, but also I have been a bit off lately.
I have been struggling with Asher's heart defect, and sad/scared for the future, it sorta seems like my joy was smothered.
To be honest taking him to the park is hard,,, I see moms with healthy kids, and I am jealous, they don't even know the freedom they posses just enjoying, thinking about the future for them is planning for college, and saving to buy the kid a car, for me i am praying Asher makes it to Kindergarten,,, so I hate to be debbie downer, but that is where my heart has been, sorta ticked off.
Last week the heart community lost several kids/young adults/babies,,, and i was overcome with fear, and sadness, fear that we are next, and sadness for the families the loss they have endured is so painful to think about mentally, and spiritually it is hard to "go there".....
I am actively trying to overcome my fear of Asher not making it, and trying to live in the moment and enjoy today!

It is hard to watch him smile,make faces, laugh, work his butt of to stand, roll, and crawl, to know he has one more surgery to endure,,, I watch him, and on the outside I smile,,, on the inside i cry,, and ask for strength to endure the burden, to be a good mom, to teach him to be strong, to teach him to love himself for who he is, and not be upset for who he may not be,,, i have been given a hard task, and sometimes really doubt i am the one for the job,,, i doubt myself, and worry that i am messing up, or will fail,,, but for Asher I keep trying,,, and remember my promise to him,,,, I wont give up on him, ever.

It has been a very hard couple of months for me,,... I dont talk about it to often, and really try not to show it. In my opinion living in fear, and being sad does nothing for Asher,, in fact it could make is life a lot more difficult then it should be, so I DONT let on.
Also dwelling on it, and constantly thinking about the bad parts is not going to make me stronger,, Some people in their lifetime will only fall and pick themselves up a few times, lately i feel like it is a daily occurrence, but i pick myself up, and go on.
I have to say I am proud of myself for that, and thankful for that ability,, my prayer is I continue getting back up, for Asher, for those that love me, and for myself,,,, this is my life, my once chance, and i wont allow my entire life to be spent grieving.

Thursday, July 15, 2010

We Made It!!!

Tomorrow Asher turns ONE!!! One year on this earth and my blue eyed boy has fought tooth and nail, for each breath!
Think about that for a minute!

For anyone that is just watching life as if you are watching a movie, stuck, without hope, no inspiration,,, take a look at the little boy, and find a spark to embrace life, and love those around you,, for life is fleeting, tomorrow is not a promise.
I would never wish this heart defect, or the pain involved on anyone,,, but will say I have been blessed with NEVER taking my son, his life, my life, my family for granted,,, the pain of this year has been like a tiny pill of awareness that some may never know. Sure I am human, there are days my energy is LOW, but the feeling of pure gratitude for having Asher with me far out shines any sleepy mood.

Asher had a Cath to repair his Aortic Arch, and coil off some extra veins stealing blood flow,, making his heart work harder. He will need another cath in 5 mnths hopefully making him a good candidate for his third stage ( open heart ) surgery thus making him STRONGER!
His cath brought back memories,,, I was NOT in anyway ready for the surge of emotion I would feel when I saw him after the procedure..... I fought tears,, my chin quivered, my heart broke again,, funny, a heart breaks, and heals pretty fast in the CVICU,,.
The fact we had staff surrounding us that KNEW Asher's journey every detail by memory, helped, it was a much needed comfort to my wounded soul.
Asher's road has been paved with struggle, for a long there was more hurt then relief,,.
Then when he has his stroke, we went from struggle to despair.... Watching him my active, alert, feisty boy,, just lay, no eye contact, no real movement, no answers to his future was almost more then I could handle,,, I cried tears of anguish, my heart was being shredded to bits, to take his place I would have given anything.
Those few days we were minute to minute,, each minute Asher proved he was NOT giving up,, and God proved he had not left us,,, the nurses, and doctors that cared for him, and those that were just working,,, ( also those that came in when they heard) proved they had not left,,, they never gave up fighting to save Asher,, and if they ever thought he wouldn't recover it never showed.... He made it,!

Today for the first time in physical therapy he sat up all on his own from a position flat ( very flat) on his back!
The therapists and I cheered, and clapped,, Asher looked over at me,, with his shiny blue eyes and smiled, a confident crooked smile,,, like " see I can do it Mama, no problem."
From the day Asher was born,, he has had a confidence,, this air of determination. I saw it in his eyes, from the moment I looked in them there is a spark there like he knew what he had to do,, and would do his part, and that spark is still there.... Thankful for that spark
There were moments I thought we would never take our boy home,, let alone be planning his one year birthday, so thankful for this chance.

I urge you to take a look at yourself,,, this little boy has overcome so much, and does it with a smile,, never giving up, always loving those around him... if you haven't been doing this what is your excuse?? I dare you to come up with one that rivals his,,, there isn't one....
I challenge you to live life with love!! Embrace it, take on new challenges both physically, and spiritually...

Thank you all for support, prayer, and love
Team Asher ROCKS

Tuesday, June 8, 2010

Country Girl, with a Top Coat of City

I strive to better myself in so many ways, but one thing I strive for is the ability to handle my life circumstances, and those around me with compassion, grace, and dignity.
These are attributes I see mostly in my Mother, and Grandmother, as well as my Mother's sisters,, it is something I admire, and greatly desire for my adult life.

I grew up in a small town, actually outside of a small town, really a no town in Ohio,, southeastern Ohio, which is very different then north eastern ohio,, very, for one thing we grow up extremely close to ( like went shopping, and my mom worked) to Parkersburg West Virginia,, need I say more,, nope.
I lived on a road that was basically a dirt road with asphalt rock stuff smushed on top, no white, or yellow lines, and really mostly potholes, it ran parallel to the Ohio River.
My house when I was little was really tiny, and old, it was the house owned by the church my dad preached at, which was also somewhat tiny, and old.
Our nearest neighbors lived over the holler, they also went to our church, our parents were best of friend, and the kids were my best of friends.... we played together almost everyday during the summer, and enjoyed our fun times before, and after church services.
We all rode the bus together, went to school together, played sports together, our fathers coached the same highschool football team,, we would christmas carol together, sled together, get in trouble together, our lives were so intertwined when we moved away ( at age 16) it was truly a devastating blow.
My Dad decided the summer heading into my Junior year of highschool to move to Portland Oregon,,,, clear across the country to the CITY!!!
Anyone that knows me knows,, i definitely do not need any extra moms,, the term "second mom" is foreign to me,, because really my mom is enough for 5 more kids, she is a very dedicated woman who loves me, and my sisters more then life itself,,, but I had two actually three women who my mom trusted to take care of us, and take on motherly duties, that was a big deal,,, I really loved them, and it was really very hard to say goodbye.
Moving to Portland was scary, starting a new school my junior year was very scary, my new highschool was literally the size of 6 of my old highschools put together,,,! I slowly adapted, slowly, made friends more towards the end of my junior year when i started training for track,,, my friends were the "jock" girls that really didnt party, we just played sports,,.
Living in the country I always felt so small, and like I was missing out on so much going on in the big city,,, I used to tell my mom I wished the trees were buildings, and that I was going to one day move to the City,,, then moving to the city,, i longed for the trees and the quite,, fresh air, and the ability to walk to your mailbox with your pj's on and not worry bout being seen.
The beauty of the move is that i met glorious people that left a huge imprint on my life,,, that are sooooo very different,.
My parents to this day still feel bad about moving us,,, not sure but I think if someone hit rewind we would have stayed,, cant even begin to speculate how different my life would be if that were the case.

My Mom: Can be a very quite individual, some have taken that the wrong way, she just really is a humble sort, who likes to take things in, analyze then speak,,... Usually ( actually mostly all the time) the words that she speaks are very wise.
My mom is very much a genius, literally her IQ is higher then most you will meet,,, and she has talents that are unique... I have not seen to many that are so good at the various, and odd things she excels at.
First she is an artist, her painting if you are lucky enough to see them ( she is shy about them) are beautiful,,, yet she isnt like most artists in that they are absent minded and unorganized,, she is actually the opposite very detail orientated, organized, and that is what led her into nursing,,, actually at one point she was on the road to be a Dr. but decided to have ummm me lol.
She taught nursing, she worked as a bedside nurse, and her last position was one of management/case management... she was always very good because she pays attention to each and every detail.
She is fiercely loyal to my father, and her children, she is a Godly woman, who is truly a very compassionate soul,, she is also one to try to control every situation, and worries constantly about her family.

My Dad: Also highly intelligent. My dad grew up playing football, and was good, he played for a team in Ohio, that produces players that move onto college, or the NFL,, he grew up in the town that is home to the football hall of fame.
He was a trouble maker in highschool, and somehow made it to Vietnam,,, where thankfully he listened to God, and made a 360,,, he finished college and is a pastor,, the reason for our move was so he could continue on in his education and entered a masters program.... he speaks different languages, and is well versed in theology.
He is mostly a very relaxed optimist,, ( at times)

My parents are both very unique, and very different people.... and my strength is something i believe they nurtured.
My mom has taught me to be compassionate and kind,, my father has taught me to search for answers on my own, and to always search for good... my mom has taught me to be humble,, my father has taught me to be confident and fight for what you believe in.
My mother taught me to be a lady,, my father taught me to play sports,,both taught me to be competitive (:
My father is a fighter, and as I grew up watched him learn to harness that determination and use it for the good causes he believes in.
My mother is a quite stealthy sort,, that is very stubborn, and determined......have watched her learn to trust and let go.

I have a lot to learn,,but thankfully I have great humans to look to for guidance... I have learned in a short time to let go of my selfish behavior and learn to look for the needs in others, to forgive quickly and truly.
In the past my biggest regret would be my quickness to anger, and my ability to use my words to hurt others,,, now ( although i am not perfect) i try to be patient and think before i speak..
I thank God everyday for giving me the parents I have, and for the wonderful childhood I was blessed with... I thank him for country folk I grew up with, and for learning the meaning of true friendship and love from them,, they are like my own family, and I owe so much to them... I am thankful for my city folk that taught me to have an open mind and not judge someone based on the outer appearance,, that beauty is found in very different things, and not to fear something just because it is unknown.... my first 30 years have been packed full of new and different experiences, good/bad, and each one has taught me,,, each one i take a bit of wisdom,,, these are the patches in my quilt,,, this is the quilt I use to embrace my son.... each patch makes us stronger, and for that I am so very thankful

Thursday, June 3, 2010

Round Three, or is it Four, wait, maybe it is Five,, ooh who knows

Terrified/stressed/nervous,,,,, to explain my feelings i use this analogy,,, have you ever played a competitive sport?? Have you ever made it to a final in that sport? Do you know the "game day jitters"? Ok, mulitply that by 1,000, and you have me,, 24/7....
Asher's Echo was not what we were expecting, really, he looks great, gaining weight, echo shows heart function is down...
So he has two issues right now, collaterals ( veins going in a big circle heading to no particular place) those are taking blood, and making the heart make/pump more blood,,,, also narrow aortic arch ( which was enlarged/made during 1st open heart) due to scar tissue more then likely.
The hope is that the collaterals/aortic arch are causing the heart to work harder, thus causing lower funtions, the right ventricle ( his only) is getting tired of supplying these crap collaterals for no reason.
The SMALL BUT SCARY possibility is that the collaterals, and aortic arch are not causing the low function that it is in itself his heart slowly getting tired of using 1/2 to do the work that a whole heart would that case things could get ugly.
Also the cath lab is where this surgical proceedure is going down,, it is a good thing, no open heart,,however they need to A. get to his heart B. make the balloon things work..... both especialy getting to the heart can be tricky since he has sooooo many clots in the areas that the cath usually gains entry.
Sooooo with all of those risks, and as if I were not enlightned to the suckiness of this defect the word Transplant was brought up...
My mind went right to that word, and FREAKED OUT, big time.
I also have a lot of work to do, not just being a mom, but coordinating this thing,, asher has serious health issue which include strokes,,, clots, and he has a lineup of docs,,, lately been very concerned with staying at our hospital, and keeping these doctors informed, so that if things head south they can nip it in the bud........Do I like this job, NOPE, but hey it is better then mistakes, or confusion,.
I am not looking forward to being admitted, to being taken from my home, to have Asher in a strange crib, strange room, strange dirt, strange smells, sounds, lights you name it,,,,again I enjoy my privacy, and def dont get that in a ICU.
I tend not to dwell on the INCONVIENANCE as my thoughts are swaying toward survival,, with both baby brain, and limbs intact,,, i say this because both were almost lost last surgery.
We had a small break, went home, revcovered, licked our wounds from what we saw, heard, and felt,,, Now going back seems harder, we got a taste of peace, love, comfort, and the beautiful sight of our son, not screaming, struggling, and fighting to survive,, this admission may be easy, this surgery may be a piece of cake, or it could really be just the opposite, we are used to the opposite, and that is where the fear comes from,,, it is not the unknown that we fear, it is what we already KNOW,,, it haunts us,,.

I walk around, go to therapy, pick up dinner, clean, play with asher, hug asher,, all the while mentally GEARING up, prepping myself, working on my "game face",, brushing up on my anatomy of the heart, going through the details of his medical history in my mind, preparing for yet another battle, gathering for a big one, and praying for a small one.
I wold looooove to dig a trench and hide in it,,, but i promised Asher before he was even born,, I am with him till the end, this Mama is not going anywhere, i am scared out of my mind and miserable just knowing that he will hurt, but i made a promise, and no matter what the outcome this is a War that we are fighting till the end TOGETHER,...
God has not left us,, he has not led us this far to take his foot of the brake, and say "see ya " not a chance,, so we march on,,, hand in hand, we will go forward scared, but willing to do what it takes for Asher,, all the while knowing he is important both in heaven and on earth.

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