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.

Leave The Bumper Sticker on The Car

I believe there is a bit of technology behind faith, years of study, training, surgeries that failed, trails of heartache, and tears.
Ultimately I know the hundreds of people praying.... Good Christians pouring their hearts out to God on behalf of Asher is why he blows raspberries like a pro today.

I watched Asher struggle, and fight, my heart hurt, and the tears would flow.
There would always be one person who either didn't care enough to actually think about the words coming out of their mouth, or didn't know how to show they cared.
It was inevitable someone would say..."you gotta have ENOUGH faith,,, if you believe ENOUGH God will heal he will, or pray hard ENOUGH."
These words at first glance are harmless, but if you really think about them, they bite.
It was as if I didn't pray hard enough, or have enough faith that my baby would be born healthy, so God stuck it to me by giving me a baby with HLHS.
I always wanted to set people straight, but really didn't feel like investing the energy into educating the thoughtless, or ignorant comments.

Months before I delivered Asher I actually had a lady tell me God wouldnt answer prayers to save my son because of my beliefs on heaven!
She said my beliefs were wrong, so God considered me a sinner, and would punish me by punishing my son??!! REALLY? It amazed me she actually thinks God has time for all that catty nonsense in the first place. Like I am some huge blob on his radar, and as soon as I screw up my little baby gets it!

Although it takes MASSIVE amounts of faith, and prayer to survive what my husband and I went through it also takes a walk with reality.
The reality is our son needed surgery ( surgeries). We couldn't just deliver him into this world, take him home, pray super hard, and if God answered we were high on the faith meter, and if he didnt we just didn't pray hard enough, and better luck next time.
God isn't the great big wish maker in the sky!
Our son's heart was, and is damaged.
I know several moms who have lost their babies to this horrible heart defect, babies very young, babies 5mnths old, babies 5years old.
You would be a fool to think these women didn't pray, and didn't have faith God would heal there children.
Yet they dont have their children on earth, Why?

Without getting into a huge theological debate, because that is definitely not what this blog is about.. I have to say this... the world is flawed just like Asher's heart, it is imperfect, people are damaged, it rains on both the good, and the evil.
These are good women that have suffered great loss, and we don't know why... but we know that those babies are in heaven, and wont have to endure another surgery, or complications that can arise from surgery,, and one day we can ask God, why?

I inwardly cringe when people say " Asher is alive because he is so strong",,, although I know this is NEVER said out of harm, or out of ignorance,, my mind goes to the women that have lost a child,, and I wonder how this comment would make them feel.
As a mother who has lost a little perfectly healthy baby girl to complications during labor,,, and knowing she fought hard, and still went to heaven, it hurts to think she wasnt "strong" enough.
Her circumstances were awful, and she was without oxygen for so long,, God spared her pain, and took her home,, that was her plan.
Asher's next surgery could go as smooth as silk, or could be a complete disaster.
He could very easily have another stroke, there are a multitude of problems that can arise.
I feel safe knowing God has a plan for Asher whether it be in heaven, or on earth.
Do I want him to fight with all he has? Yes! Do I think he is strong?? You bet!
I also pray a prayer every night that hurts to pray,,, asking God to take him home if he is to suffer unspeakable pain, and not get better,, to spare my sweet boy extra hurt,, that prayer hurts.

The point of this entry is if you see someone that you care about struggling with grief especially over a sick child, loss of a child, or a loved one, think about what you say.
Don't say you know how they feel-even if you are going through the exact same form of struggle you don't know exactly how they feel,, you can relate, but we are not them, and their grief is their own, let them have it.
Let the person know you care, and are praying, tell them that God will never leave them.
I always knew someone really cared, and rather enjoyed it when they would skip talking all together, and would just give me a hug, and let me cry.
Sometime there is so much hurt, there is no room for words,,, that is the time to Leave the Bumper Sticker on the Car.

A Nerd Saved My World

Athletes save the weekends ( from boredom) and nerds save the world.

From the moment I found out I was pregnant I wanted a boy.
Not only did I want a boy I just KNEW I was having a boy.

Every since I can remember sports have been a major part of my life.
My Dad is a jock, and grew up playing football. When I was young he coached football, and wrestling for the local high school.
I think my dad probably would have liked having at least one boy, but he got three girls(: with me being the oldest.

Growing up I enjoyed being active, although coordination wasn't my friend. Tried out for softball in elementary school, could hit, run fast, but couldn't catch,, should rephrase that WOULD NOT CATCH the ball, would run, or duck down - very afraid of getting hit in the face.

My freshman year of high school I ran track, ran fast, and running fast was very easy it took no special coordination, or bravery, and kept my attention because the race would be over in a few seconds. Track was MY sport.
My husband grew up playing baseball, very good pitcher, and as an adult is a very, very good golfer.
We love sports, and we love watching sports together, football,, basketball, and when I have lost full control of the remote, golf. (:

You better believe when we found out we were having a boy his athletic future was mapped out!
Genetically this boy would be unstoppable ( like a little superman) tall, fast, and thanks to wallace coordinated.
I couldn't stop talking about the runs we would go on, baseball camp, golf lessons it was just so exciting!
Then came the news HLHS???? Missing left ventricle????
Wallace asked the question,,,, I already knew...
The Dr. explained no football, maybe baseball, but def wont play at any level higher then high school, if he made it to high school.
It became obvious really fast that sports were the last thing this Dr. was thinking about, and really living was going to be the real challenge for our son.
Months later sports were the last thing on our mind, and making it to tomorrow was all that mattered.

The day after Asher's first open heart surgery ( norwood stage ) he went into cardiac arrest, his heart stopped.
Wallace, and I were bedside, cheerful that he had made it through the night with no issues, the first night after surgery is the test,,, bad stuff usually happens during that time, meds adjusted the body gets used to its new circulation.
The code happened fast alarms went off the nurse moved fast, the DR. happened to be in the hall, and came running.
I backed away from the isolette,, trying to make room there were so many people running in, and moving like lightening.
My eyes locked on my son,,, Asher for a moment opened his eyes,,, I saw fear, and panic, it was a look I will never in my life forget.
I screamed, and ran,, ran fast down the hall. I screamed out of hurt, and ran because I didn't want my emotion to disrupt the Dr. he needed to concentrate on saving Asher.
I thought Asher was going to die.
I sat crying,,, the left side of my body numb, couldn't breathe, couldn't do anything but look at wallace, my jaw clenched,,, we waited.
The nurse came to find us,, i fully expected to hear the worst.
Then she said, " he is ok, he just got a bit dry, and crashed." WOW!!
Then the Dr. came in,, he sat down and explained what happened.
As he talked he took his wire rimmed glasses off, and wiped them with his shirt, he was a bit out of breath, and his cheeks were pink.
He told us we could come see Asher, we followed him back to the room, and stood over Asher as he explained what was going on, and what they would be watching for in the next few hours.

Over the months we were at the hospital I got to know this Dr... in fact Wallace helped him out at a golf tournament ( apparently this Dr is not the best golfer (: )
He is however one of the smartest people I have ever known. He considers himself to be a nerd, and told me he has never been good at sports.
He told me he thinks Asher will be a nerd, maybe a doctor, and when he said this he seemed proud, like they were little comrades, and had this bond, like Asher could be part of his group.

I don't know what Asher will, or will not be physically capable of, but I know I will love and support him in whatever adventure he chooses, whether he chose to compete in chess, play for the NFL, or be a Dr. like the one that saved him that day.

That Dr is a total nerd, but he the amazing nerd that saved my world. He is, and will always be a hero to my family,, he is known at the hospital as the King of the Code, the one you want if your child is trying to die.. he is the man with the wire rimmed glasses, horrible golf game, and a memory like that i have never before seen,,he is the man that saved my son.

The Face of Fear

Fear= an emotion experienced in anticipation of some specific pain, or damage.

To say I have no fear of losing my son would be a lie.
When i read stories of children with the same diagnosis as Asher, and the child does not do well, my mind sneaks off to a dangerous place.
Like vapors of poison seeking a victim my fear begins to smother me, and panic ensues.

I become sick at the thought of not holding Asher again, seeing his crooked smile, or hearing his seagull shriek.
I wonder if I would, or will survive life is Asher passes away.
I worry that the pain of that event would be to much of a burden, and I will just give up on things that matter,, like my marriage, health, finances, GOD.

The fact is Asher is basically an example of a living dead, a little ghost baby ( i dont really believe in ghosts if you were wondering).
I feel confident in saying 20 years ago, even 10 years ago if Asher had been born he would have most certainly died, and here he just turned 9 months old.
That fact should make me feel better, but it doesnt.

Fighting fear is a daily battle for me.
Each morning I wake up, go into Asher's room, and breathe a sigh of relief as I lift him all warm and cuddly from his crib, so thankful we made it one more night.

Today I feel discouraged, and scared, uncertain of our future.
The only verse that has given me comfort, and a sense of calm is
Lamentations 2:19 "Pour your Heart like water before the face of the Lord. Lift your hands toward him for the life of your young children."

The Hard Way

"Wouldn't it have been easier if you had terminated the pregnancy?"
These words came out of the mouth of a woman as she looked directly into the shiny, round, blue eyes of my son.
She had asked about his feeding tube, and i explained to her that he had a heart defect that made his appetite not what it should be, so the tube is how he eats.
Then she followed up with the doozy about wacking my son,, I said, " my life has never been easy, i don't do easy, and certainly wouldn't trade easy for my son".

If you know me then you know I do EVERYTHING the hardest way possible, not even on purpose , it just turns out that way.
I was born early weighing in at a little over 2 pounds and spent months in the NICU,, 30 years ago I wasn't expected to make it, and i did,, the hard way.

Math in elementary school,, a DISASTER always got to the solution everyone else did, it just took me 20 min longer, because i would make up a new way to get there that was unbelievable complicated.
Hiking-always took the longest hardest trails without even knowing it. (or took trails that required you to wear snow shoes,, and had no snow shoes,, melissa you were involved in that).
Losing about 60 pounds of pregnancy weight in record time because I slave away at the gym.
The list is long,,, always harder, not better, but harder.

Now my beautiful son Asher, the baby of my dreams without knowing it and through no fault of his own is following that trend.
He entered this world, and surgery after surgery finally made it home.
He uses his foot to hold his book, and his only good hand to turn pages.
He tries to crawl, and sometimes makes it but only if he drags his right arm.
He tries to sit up from a laying down position using only his left side.
He drinks from a bottle but never latches, just swirls his tongue around till formula comes out.

Asher and I have a lot in common.
We came into this world the hard way fighting to survive.
We learn and grow, the hard way, and most likely will both leave this earth the hard way.

I guess I should have speed dialed my mom, handed the lady my cell, and have her ask my mother..."wouldn't it have been easier if you had terminated the pregnancy?"

Car Seat ENVY

I dont think to many can understand how badly i wanted to use my car seat.

I had pondered at target over car seats, and stood in that section for what seemed like hours, it especially seemed like hours to my swollen over worked ankles.
Finally I picked it!!!
My choice was brave, and the car seat stayed in the box for a looooong time. The car seat was NOT in the car on the way to deliver Asher.

Over the weeks that turned into months I would watch patients come, go, and then come back again to visit the staff ,, always in a car seat.
I would see parents walking into the hospital with an empty car seat, and walking out with a baby cuddled up snug and safe-going home.
Every morning I would walk into the hospital-no car seat, at night walk out-no car seat.
My hand yearned to hold the handle of my beautiful car seat, with Asher safely strapped in.

The days ticked, and I grew more anxious for my turn... I wanted a tee shirt, that said I JUST HAD A BABY, BUT CANT KEEP HIM WITH ME!
It bothered me, I was fat, and for all anyone knew just needed to hit the gym-why??? NO CAR SEAT. I cried aloooot, for all anyone knew i was just an emotional lady-why?? NO CAR SEAT.
Unless someone knew me they had no idea I had a baby. I never carried my car seat with Asher in it, it was like I had no proof to show the world he was born, and I HATED THAT.

I started feeling sorry for myself, thinking I DESERVE THE FREAKIN CARSEAT!
I was pregnant for petes sake,,, i threw up for months, gained 55 pounds,got stretchmarks, stopped my running, slept all the time, was unable to work, gave myself lovenox shots ( well wallace actually enjoyed stabbing me daily (: lol), had a C-section.
I deserved it, Right???

Then one day, in a room close to Asher's the battle for life was lost, and a mom walked out the hospital doors for the last time with no car seat-no baby, and part of herself missing.
Her hands hung low, her eyes tired, her body weak, her daughter dead, no car seat.

My envy disappeared. I realized my day of taking Asher home in a car seat was still a possibility, there was still hope.
I needed to be patient to wait on God, to be thankful I hadn't been the one to make that last walk down the hall, but to have compassion, and pray for that woman that did, she never got to carry her car seat.

Being Asher's Mom

As many know Asher has hlhs, a severe heart defect, it is the most complex. He is essentially missing the left side of his heart.
My husband, and I found out Feb 2009 when I was 5 mnths pregnant.
Our lives changed that day.

Being Asher's mom meant the night we found out crying myself to sleep, waking up in the next morning with a gut wrenching fear for the life inside me. A life that would face hardships, unbelievable pain, and fight for every minute on this earth.
That was the hardest part of being Asher's mom knowing as soon as he was born I could no longer protect him.

Being Asher's mom meant listening to the lady at the grocery checkout say "well at least it is healthy" Really? I never wanted to explain that i already knew he wasnt healthy-did i love him less? NO
Explaining his defect was usually worse then answering questions about his health, or lack of.
It was painful making the mistake of telling people about his defect, so they could say something stupid like " oh well my neighbor had a kid with a hole in his heart, and he is fine now". WOW-yeah because that trip to the Cath lab wasnt exactly life threatning now was it??? Didnt make me feel better, ever, just annoyed. I never told people,, so they could compare him to a child with basically the equivalent of a scraped knee.
Also would cringe at the bumper sticker reply "everything will be ok, just have faith"... really? how do you know?? I guess since everything will be ok we wont need open heart surgeries, the vent, or intensive care now would we?? Being Asher's mom meant the need to bite my tounge, and screem at the foolish comments inside, not outside.

Being Asher's mom meant feeling so alone, like the only pregnant woman going through grief, searching the internet and finding friends with children that had the same heart defect. It meant crying as I typed my story, and crying as i read their stories.

Being Asher's mom meant not getting to hold him when he was born, it meant watching the baby of my dreams struggle to breath.
It meant watching the nurses do things like change diapers, and bathe him, things I so desperately wanted to do, but knew he was to sick.
Being Asher's mom meant packing up and moving to the Ronald Mcdonald house, so I could be close to him, but never close enough

Being Asher's mom meant learning more about the human heart then a person who is NOT a doctor should know. I say doctor because I know more about the heart especially the hypoplastic heart then most new nurses.
Being Asher's mom meant learning what all the monitors in the intensive care unit meant, it meant learning to tell the difference between heart failure, and feeding issues.

Being Asher's mom meant signing consent, and handing him over for open heart surgery, again, and again,,, knowing I will have to do it again.
Being Asher's mom meant watching the Dr do CPR on him the day after surgery, and nearly passing out.
It meant watching him struggle for weeks with heart failure, and now answers why, it meant the possibility of a heart transplant, and still in the future that possibility looms.

Being Asher's mom meant never getting to dress him in his cute Newborn Clothes.
It meant learning to find my voice, and make sure he was taken care of protecting him at all costs, knowing him well enough to assess him, and know if he was in painor not, and at time demand meds.
It mean learning to find my voice, and utilize all of my communication skills to defend him, without alienating, and hurting those that took care of him.

Being Asher's mom meant sitting in the corner of his room day and night because there was to many machines and pumps to close to his crib.
Being asher's mom meant finally getting to take him home after 5.5 long months in the hospital.
It meant struggling to get his feeding pump to work, and his sat monitor just right. It meant for the first time getting to spend the night in a actual bed, right down the hall from my son.

Being Asher's mom has been and will continue to be a special journey.
It means never taking anything for granted. I cherish every smile, laugh, and cry.
Being Asher's mom means never giving up, always having faith, and knowing Gold loves him more then I do. It takes tenacity, and patience. It means doing to best I can to take care of him today, not worrying about the future,, if he will need a transplant, if he will make it thru round three,, taking care of him today, loving him today,, i dont know if i will have him tomorrow, or the next day, but i know he is here today.
I KNOW GOD'S EYE IS ON THE SPARROW