millions

If I had a million dollars - oh the things that I would do! I would just completely replace the a/c unit instead of buying a $1400 coil! I would donate to our Children's hospital. It would in no way, shape or form compensate the time and attention they have given us...but it would be a nice start. I would help my fellow kidney mommies that are getting short changed by the government, because why help the kids that can't live without medicines and surgeries in favor of helping able bodied lazy people?
I would pay for a trip to Disney for all of us too - a week of magic for our miracles. I would set up support and non-profit groups to help those facing a high risk pregnancy, families separated and/or out of work due to NICU stays, those working several jobs just to make ends meet for medicine co-pays, and a group solely to take care of the caretakers.
After living with a sick child and seeing other families dealing with this too, money seems so different now. Yes, I want more...we need more. Especially in 15 short months when medicare runs out - that's gonna hurt! But if I came into some money, I just could NOT spend it on us. I have a family out there that needs help too. Most of us want what money can't buy - health, normalcy, peace of mind. Fancy cars do not speed up your wait on a transplant list. Huge homes can not shelter your heart and mind from what may be lurking around the corner. Stylish clothes may cover up physical scars, but not emotional ones. A million dollars means nothing when you've lost your dream, your life, your soul, your child.
If I had a million dollars, I would buy back time. Time for my friends to have with their children: Aidan, Matthew, Vayden, Conner, Emelyn, Adam, Nels and SO many others...it's just unreal. I would give each of them just one more day. I know it would never be enough. You can't put a time limit on how long you could and should love your children. You can't put a price on it either.
Here's a poem I found that I think sums up a mother's love for her children near and far.The Cord
We are connected,My child and I,by an invisible cord. Not seen by the eye.
It's not like the cord that connects us 'til birth. This cord can't been seen by any on Earth.This cord does it's work right from the start.It binds us together attached to my heart.I know that it's there though no one can see the invisible cord from my child to me. The strength of this cord is hard to describe.It can't be destroyed. It can't be denied. It's stronger than any cord man could create. It withstands the test can hold any weight. And though you are gone, though you're not here with me, the cord is still there, but no one can see. It pulls at my heart. I am bruised...I am sore, but this cord is my lifeline as never before. I am thankful that God connects us this way. A mother and child death can't take it away!

I remember them! I talk about them. I love them. I miss them too. Here's a million wishes that no matter how long it has been, you always feel them near you. And a special shout out to sweet Aidan as he approaches his angel-versary. He outgrew his tired and sick little body to grow great beautiful wings.

Courage

"Often the real test of courage is not to die, but to live" - Conte Vittorio Alfieri. I see this courage everyday in Matthew. He has so much to be afraid of and anxious about, but he does his best and puts on a brave face when all is said and done. Even this afternoon, after being strapped down, so upset he threw up and covered in a sheen of sweat due to his screaming and thrashing about, when it was over he smiled, waved and said "thank you for the owie". My brave little boy.
I wish I was as strong as him, as brave.
I've been told that while it takes courage to achieve greatness, that it takes more courage to find fulfillment in being ordinary. Though I have no doubts that Matthew is extraordinary, I'd be thrilled for him to accomplish "ordinary" things. Matthew had a procedure today to find out how close we are to "ordinary"...we're not that close unfortunately. We still have a long way to go it seems. But (and without any intention of being a Miley Cyrus wanna-be) it's more rewarding to take the scenic route to your outcome than the direct approach.
We've take the scenic route SO many times before...actually...EVERY time before now that I think about it! Every time we had a surgery with one goal or outcome in mind, another one was thrown in our way that came out of left field. Everything "easy" was complicated, but because of that...it got easier. Does that make any sense? That even though it was hard, it was better to go through it that way; either to teach us a lesson in patience, compassion or that it really does all work out for the best in the end. I wonder what lesson we will learn out of this little detour?
I'll tell you what I know now: that it is ok to be angry at the way things are, as long as you have the courage to look ahead - knowing that they will not always be that way. We're holding on to hope and courage here; I'm lucky to have such a great teacher such as Matthew to guide me.

And then it snowed

If you couldn't tell by my previous post...I was having some hard times dealing with sweet Aubrey's passing. I just didn't see what purpose that could have served. But then realized the purpose wasn't for me to understand. I felt both the guilt of having a child that has defied death (let me count real quick) 9 times and the empathy of being a parent that has had to deal with the shock, confusion, fear and anger that their child was chosen to be so greatly tested.

If you have been reading my blog since the beginning (I think the whole three of you) then you might remember my feelings on snow. No, not the blizzard in the east...just some random snow flurries or a light dusting that makes a southerner look around and say "wow, that's beautiful". Every time I had doubts during my complicated pregnancy, namely before each of the fetal surgeries...God would send me snow...even in April. :)

It would cleanse me of my selfish wants and reaffirm my faith that God was in control of the situation. I just had a supporting role in all of this, no longer the lead actor. (Kind of crushing to my Leo ego too). I would pray that God would send me some sort of sign that all would be ok, that I could walk into that ultrasound room with my head held high KNOWING I would hear a heartbeat instead of silence. The bad thing about having a baby that was without amniotic fluid - risk of cord compression/suffocation...I was a major kick counter momma!!

On the way to memorial service, our car was hit with tiny snow flakes. Going into the church, flurries clung to my black dress coat. Waiting in the receiving line to pay our respects to the family, I noticed white dots swirling in the trees and bushes outside the windows. And again leaving the church, tiny flakes were flying into my red eyes making them sting all over again. Once I reached my parents house to collect my boys, it stopped.

God was telling that He was with Aubrey and Aubrey was just fine. Don't worry Karen, I've got this family well covered with family and friends and love. Just be there for them, share Aubrey's memory with others and love each moment you have with your family and children. Be extra thankful for the handcrafted snowflake I put into your life on January 14th when your son's blood was truly cleansed for the first time ever.

I will.

Music for my soul

I need music. Music is a form of prayer to me. It speaks to my soul when I'm too close minded, frustrated, hurt or checked out to listen to others. I kind of checked out this afternoon. Just went to my bad place of hugging my knees to my chest as sobs came freely. It is therapeutic...but I'm a mother and can't do it often. Matthew was taking a nap after we got home and William was decorating a gum drop Christmas tree with my father in law. I had a minute to myself...and lost myself. Lost my will. It's back. I'm back. I'm ready to fight for my son...for his rights. To move things along and take things as they fall. Just writing down some of my favorite lyrics for days like these:

Little Wonders - Rob Thomas

let it go,
let it roll right off your shoulder
don't you know
the hardest part is over
let it in,
let your clarity define you
in the end
we will only just remember how it feels


There can be Miracles - Prince of Egypt

In this time of fear,
When prayer so often proved in vain
Hope seemed like the summer birds
Too swiftly flown away
Yet now I'm standing here
With heart so full I can't explain
Seeking faith and speaking words
I never thought I'd say

There can be miracles
When you believe
All hope is frail
Its hard to kill
Who knows what miracles
You can achieve
When you believe
Somehow you will
You will when you believe


The Prayer - Celine Dion

I pray you'll be our eyes, and watch us where we go.
And help us to be wise in times when we don't know
Let this be our prayer, when we lose our way
Lead us to the place, guide us with your grace
To a place where we'll be safe

And of course the song I always go to when I think of Matthew. The song I included on his section of the Christmas video I did on my boys last year. Oh how I love my gift from above. :)

Winter snow is falling down
Children laughing all around
Lights are turning on
Like a fairy tale come true
Sitting by the fire we made
You're the answer when I prayed
I would find someone
And baby I found you
All I want is to hold you forever
All I need is you more every day
You saved my heart
From being broken apart
You gave your love away
And I'm thankful every day
For the gift
Watching as you softly sleep
What I'd give if I could keep
Just this moment
If only time stood still
But the colors fade away
And the years will make us grey
But baby in my eyes
You'll still be beautiful
All I want is to hold you forever
All I need is you more every day
You saved my heart
From being broken apart
You gave your love away
And I'm thankful every day
For the gift

Time

Oh, a mother is never happy with time are we? From February 08 thru February 09 (and most likely beyond), I've battled with time! Time to hurry up and get prelimary testing down on Matthew to see if he had any genetic disorders or other abnormalities...nope just a broken weeny...let's start fetal surgeries. Time to stretch and keep going. Gotta stay pregnant for as long as possible, at least I made it past two set goals...weeks 28 and 30. Unfortunately I didn't make it to my third goal of week 32, but Matthew's preemie issues just aren't even issues thankfully.
Once Matthew got here, it was a constant battle of me wanting him to stay tiny and small and wanting him to grow big quick to get to transplant. This has been a hard part. Matthew is our last baby (if I have any say and God agrees). I wanted to enjoy my last pregnancy, but was in a constant state of alertness and concern. Every movement was monitored by my brain...oh. he's just rolling...fluid is low...gotta contact Dr Gomez to work me in sooner. I wish I had been able to go full term. I see pregnant ladies waddling around Walmart and wish that could have been me. I hear pregnant ladies griping about being big and uncomfortable, wishing the baby would hurry and come. I wished mine had stayed in. I was uncomfortable from week 18 out, from that week...I never went longer than 7 days without at least one needle in my stomach/uterus and many times their were instruments much bigger than needles in there...without pain meds! But I didn't mind, and would gladly do it all again. Matthew has helped me take stock of what is important in life and my physical comfort takes a back seat to his. He has made me count my blessing and realize how truly grateful I am to have him in my life. What a role model he is...and he is only 8 months old.
But now I can't take the pain for him. He's going to have several surgeries before his transplant. If they don't work, then we don't get to transplant. And once again, time is not on my side. I will wait a week (that in retrospect will seem small, but now seems daunting) to hear how we will proceed. Which surgery will be first? How many total? How much off of our original timeline of a summer transplant are we going to be?
I have many wonderful friends that often say they don't know if they could do all of this, go through all of this...but I don't doubt it for a second. We are moms, we would do anything for our children. Yes, it breaks my heart, but my spirit is strong. My faith is strong. And I am human. I break down at night in my husband's arm and have my own "why us" moments. But I get back up, dry my eyes and go into both boy's rooms...and then I know. One look of my sleeping angels is enough for me.
Matthew is teaching me to be a better person, something I prayed to be. Thank you Matthew for giving me this gift of insight. I love you so much my little man. And for that, I will always be there for every surgery, every needle stick, every test, and every milestone...through out time.

Closed?

I just got off the phone with my hubby as he was leaving from his visit with our son Matthew. We take turns visiting if we can't find a sitter for William, so I go tomorrow and we will both go on Tuesday together when Ian's dad watches William for us.
I asked him how our little tiny hiney munchkin was doing during his visit and he informed me he only visited with him for about 20 minutes! He had been there for an hour and a half...why only 20 minutes? They had closed the NICU temporarily. What on earth would make them close the NICU to parents of sick babies that need the loving touch of mommies and daddies? Well, Ian had an idea...though it wasn't confirmed...it made sense.
When they opened the NICU back up, Ian saw a nurse and the hospital chaplain following a couple holding a teeny tiny bundle in a blanket. Ian knew a baby that small could not make it off of monitors and iv's...so his conclusions is that the baby didn't make it. :(
The minute he said this, we both started crying on the phone together, me on the couch and him in his car. We realized how truly lucky we are and how strong our little fighter is. We knew going into the this that it was all in God's hand, but we are so happy to know that He still has plans for our little boy. Even going into the NICU and seeing all of the babies, some VERY sick, it just doesn't register that some may not make it. You just pass a kind, knowing smile to the fellow parents and rush to your baby's bedside. You never talk about why a baby is there, you just rejoice that they are getting help.
I pray for heaven's newest little angel that has floated up into Jesus's arms tonight. Rest in peace little one. Your fight is over. Visit your parents in their dreams...I'm sure they'd love to see you. I also pray for the parents and family of this little baby. Help them get through this tough time. Give them the support and love that they need. And thank you God for letting Ian be there instead of me...You knew I would have fallen apart. Please continue to rest Your hand on Matthew.

Snow fall

Yesterday morning we woke up to a beautiful scene...snow flurries in March. For metro Atlanta...this is unheard of sometimes even in January, so we appreciate it whenever we can get it. As a child I would stay up late when the weatherman predicted so much as a dusting...in hopes that schools would be closed. I would wake up in my bed every hour and peer out the curtains to see if the "magic show" had started. Most of the time I woke up tired and in a very grumpy manner...made my way out to the bus stop. But sometimes, my wishes came true and I woke up to a winter wonderland (at least in the eyes of a southerner where 2 inches was beyond our wildest dreams!). Snow always brought out the child in people...including my parents...and the innocence that comes with being young at heart.

On this "snow day" (it never actually stuck to the ground - just dusted our deck and roof) I was able to enjoy it with my son and husband. I saw my little boy spin like a spiraling snowflake in avid delight. When a gust of wind would take the flurries high over his head, he would squeal and clap as if he were in the front row of the most sought after play in New York. I can't wait to see what he would do if it actually accumulated enough to make a snowman!

It has amazingly enough snowed twice in two weeks, the morning of my son's birthday and then again yesterday morning. I am now viewing snow in a different way...a cleansing way. As if God decides he needs to purify our lives from the hardships of being adults sometimes. Whenever I have felt myself over the past two weeks start to come undone with stress or pressure...God has given me snow! On my son's birthday morning, I was up at the crack of dawn heading to a prenatal specialist appointment for my other son that is on his way. We had done a procedure the previous afternoon and I was nervous that we were not going to have favorable results...but we did and I relaxed and enjoyed my son's birthday as I had prayed I would be able to. We were scheduled to have our little baby's surgery to help him out on Friday afternoon, but were unable to do so when the doctor called saying he was too short of staff and needed a room full to monitor both the baby and myself. I was very frustrated at even having to wait another 48hours, but at the sight of snow Saturday morning...I knew all things would be alright. God was giving me a wonderful opportunity to create memories with my son that is here with me now before I am restricted to bedrest. And I greatly appreciate the chance!

Back in high school, I was part of the church choir. This morning while in the shower I was reminded of verse of one of the songs we used to sing (we even made a cd to sale for a fundraiser for the church!). It said "by Your blood, I am made whiter than snow". Thank you God for wiping away my most stubborn doubts with a delicate snowflake.