Choosing the hard way

I chose the hard way. How much simpler life would be if I never had to worry about PD, hemo, surgeries, medicines and the like. We would have traveled, explored and spent more time together as a family. But something would have been missing. If I had agreed to terminate my pregnancy...if I had a do not resuscitate order in the NICU...if we didn't have someone step forward to donate her kidney - life would be different.
We chose the hard way, the parents of our renal warriors. Seeing our child in pain, waiting out numerous surgeries and procedures, staying vigilant by his hospital bedside and praying. We have fought for our child's right to take his first breath. The hard way comes with unbelievable pain, anxiety and fear.
The hard way also is lined with hope, love and trust, but sometimes it is hard to see.
When your spouse dies, you are referred to as a widow/widower. When both sets of parents die, a child is called an orphan. There is no name for parents when their child dies - there are no words that can describe it. A friend of mine has lost her son to a long battle of end stage kidney disease. I have no words.
She chose the hard way and has now falling on harder times. But in between she had many beautiful moments. Moments she will cherish her whole lifetime until she can be with him again. And when she is, he will be whole and perfect for the first time.
Sweet Aidan flies into heaven lifted by his mother's love and holding on to his father's kidney. Their love will grow for their son as he now becomes their protector, watching over them.
His way of saying thank you for believing in me, for fighting for me and for loving me SO much to let me go home.
Please take a moment and say a special prayer for this grieving family: pray that the hole in their hearts mend. Give them the strength to carry on these next few days and for the many years following. Bless them with the comfort of knowing they did ALL they could do and to NEVER doubt that. Help them to see happier times and to hold onto Aidan's love.

And the Earth keeps turning

Have you ever had one of those moments when life stands still? Perhaps as you exchange vows with your soulmate. Gaze at the flickering heartbeat during an ultrasound. Or raise your glass to toast your grandparents 60th wedding anniversary. What wonderful times, times we wish we could slow down and savor as they speed past us leaving an imprint in our souls.
Then comes the times that are slow, and sometimes quite painful. Where your world stops, but everyone else keeps going. I have felt that numerous times - I think we all have. Either experiencing a fear so great or a grief so pure. A time when you wonder as you look out of the hospital window, unto the street below, is anyone as sad or as frightened as I am? Is that couple arguing about a missed turn a few streets backs? Perhaps that family is on their way to drop by at a friend's house? Maybe that guy is heading home from a late shift at the office. Their world is still spinning. Life goes on.
When Matthew has been facing a rough patch, I log on to the computer to update my friends. Opening my email account I would see funny jokes that had been forwarded, the "gifts" sent to my facebook account for whichever game I was hooked on at the time, and all the newsletters/recaps from the forums I was a part of. I would sit in silence, knowing that the life was continuing for others while my son's life hung in the balance. I could see it enfolding in front of me...and yet I was numb to it.
I didn't give a damn about getting a can of fuel for my farm or what the priest and rabbi said upon entering the bar...I just wanted my son to be better and out of danger.
I guess if you have never been there, it is hard to put yourself in that place. It sucks to the point...that I just can't explain in words...only a weary sigh. But I am asking you to put yourself in that place right now.
A very special kidney warrior is fighting for his life tonight. He has been through so much and has always come out a champion. Now he needs us to rally behind him and lift him up. Pray for healing, strength, peace and wisdom for sweet Aidan, his family and his doctors. The power of pray can move mountains - we just need it to move a dialysis catheter into place to give this sweet boy a chance.
As the Earth turns, I ask you to turn your face towards heaven and pray.
http://aidansfight.com/

Overdue

Well, I can't title it update since it's been well over a month since the last time I put anything in here. Whoopsies! What can I say except my standard pathetic excuse of "it's been busy"! Just after I posted on here, Matthew had his 6 month biopsy. The results came back that he was in rejection. Needless to say, mommy had a wee bit of a melt down and we had to go to the hospital daily for IV steriod therapy. THAT made him pleasant let me tell you! Turning two (which is always a fun age) combined with "roid rage" - oh it was a blast! ;) But it did the trick! Our repeat biopsy was one day before my 31st (mumbling obscenities under my breath) birthday. I got a WONDERFUL present of knowing that for the first time, both of my boys were as healthy as they will ever be! Yes - a great birthday!!
Shortly after, Ian had to leave to go clean up BP's mistakes. He travels from New Orleans to Hopedale to Venice daily to oversee the clean up and make sure it is being done right and not just "swept under the rug" or sand dunes as it may be! We miss him, but as William says, someone has to help the sick fish. ;) Sweet little boy! At least this will be experience on his resume. He would love to get into the EPA next, once promotion in the GA DNR becomes stagnant. Daddy will be home just in time for Halloween - so that will make trick or treating much sweeter. :) Especially since Matthew didn't get to go last year when his blood pressure was acting up and he was in patient for a new hemo line.
We just got word that Ian's grandfather's cancer has returned. He will be going to Emory next week for a consult and see what (if anything) can be done. At least he will be at Emory. I do trust them better than most hospitals. I'm praying that Ian gets home in time to see his grandfather before he gets too sick. Ian idolizes him. So, we are asking for prayers that he pulls through once again.
Well, my alarm (Matthew) just went off - so back on duty I go. Sorry for the short re-cap. Like I said - always busy.
I'll get better - promise. Have a wonderful weekend!

I don't get it...

Why is God mean? I know He is fair and just and loving...but yesterday, I didn't see that. My friend's daughter, whose 2nd birthday is on the 15th, passed away in the wee hours of the morning yesterday. A nearly two year old...seriously...that for an entire year of her life had to battle cancer. She was "cured" of it through a liver transplant, only to relapse 6 months later. Yet the drunks, rapists, murderers and just plain jerks are feeling fine and living fancy free!! It's a crock of crap God - just so You know.
I don't understand why children die, why children suffer. I went to Sunday school. I sang "Jesus loves the little children". It completely stunk that Aubrey had to suffer for months, but I think what is worse is the suffering her four year old sister will endure now. How do you explain death to a child that can't understand that fact that a cold will not kill her. Daddy is going to work, he will not be gone forever like Aubrey. You will see Aubrey again one day. No, not tomorrow sweetie. Yes, we want you play together too, but please don't talk about leaving mommy and daddy anymore - it makes us sad.
I just can't imagine!
I know God's purpose is better than our own. I know God knows more than us. I know God is watching over his children of all ages. But it doesn't mean it doesn't suck. It does - big time.
I have NO sympathy for those people that drink and smoke themselves into cancer. Well, that's too bad - guess you shouldn't have been a chimney for five decades huh?? I'm a firm believer in what goes around comes around. If you are stupid and put crap in your body, your body will get even with you - whether from a heart attach with too many Whoppers or emphysema from too many cigarettes (which is what killed one of grandfathers). But a child hasn't been around to do anything wrong! I know God doesn't work that way - punishing those that speed or lie or cheat on their spouses (I would LOVE if He gave everyone that commits adultery a scorching case of the clap - again...I'm mean like that). But He's not. I just don't get how He picks and chooses. I hate how He picks and chooses. Why this child and not some other child? Why that child and not that child there? I guess if I had the answers I would be a millionaire and that is not the case!
I will see how God unfolds His plans with their family and with our family. I'm SO happy He placed us together earlier last spring. I hope I am able to provide any means of comfort and support that I can to them at this time. Please keep them in your prayers. Pray for the parents that teeter back and forth between shock and despair. Pray for Aubrey's older sister that she will get through this with as little long term effects as possible. I hope Aubrey visits her sister in her dreams often. Pray for the grandparents and extended family, for they lost a loved one too but are often overlooked during the funeral and weeks following. Pray that Aubrey is finally at peace and feels no pain. I pray she is happy, healthy and running wild.
I will miss that twinkle in her eyes.
The last time I saw her, I was leaving with Matthew from dialysis and she was coming in for transplant labs. Her mom and I stopped our strollers a minute to talk to one another while the babies talked to each other. I looked down and they were holding hands. I think they would have been great playmates. One day...one day. Rest sweet Aubrey, you deserve it little angel.

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

The one I keep starting over

I've been trying to type this post for about two weeks now. And MY...how the weeks have changed things around here! In the course of 11 days I've gone through fear, anger, relief, elation and doubt. Two Wednesday's ago (Dec 2nd) my son was rushed to emergency surgery when his hemo-catheter was pulled loose. Yes, the catheter that runs straight THROUGH his heart. And yes, the same catheter that was replaced on Nov 3rd the previous month. Needless to say, I didn't take this well...at all. Luckily, for Matthew's one year hemodialysis anniversary, Matthew's new catheter worked much better than the tiny one placed in his little 5.6 kilo body the previous year. I was still a mess that we had made it to his one year anniversary. Yet another milestone most babies under the age of one never see on hemo...Matthew has fought his way through. With congestive heart failure, fluid build up EVERYwhere, two bouts with sepsis, numerous clots and catheter issues and three surgeries for perma-catheter placements... I think he's pulled his load enough this year (without even touching all the stuff he went through before hemo!). Time to go after the transplant team! I called for a team meeting immediately to make sure everyone was on the same page.

Guess what? We got a pager. :) Guess what else? Our potential donor (remember St Marie - donor number 4) passed her kidney test screening (that no one else has so far)! OK...one more. Guess what again? Marie has been "rush ordered" for her next testing/screening. It will be THIS week. THIS Friday and Saturday!! Do you know what that means? We are almost DONE! That is the last part! We are fortunate to have a donor in GREAT health and she really takes care of herself and exercises regularly. The only possible "kink" could be the number of veins feeding her kidneys. We want ONE juicy big vein!! If there are more than that, the surgery is off. :( Nothing that can be controlled or manipulated...so fingers, toes and eyes are crossing in our family this week. We could actually KNOW if it will work out before Christmas! :)

I'm really not trying to let myself get too excited. It seems little Matthew has a knack for finding good fortunes only to be kicked in the kidney so to say. I don't know if we can take another hard knock. We will of course...but it won't be pretty. We are really hoping for a Christmas miracle. A true gift from God this year. He gave life to His Son, now I'm asking that he keep my son alive.

As we say in the kidney world, Matthew appears to be "fading" a little bit more each month. Yes, he is still happy and active, but the cost is more medicines and longer dialysis. We have been talking four days a week soon. I don't want it to come to that. I don't want my son plugged up to a machine more days than he is not. It gets to be the question of am I doing this for him or for me...

We do have an "out". If sweet Marie can not donate for some reason, Matthew gets listed for ALL matches. Remember that pager I mentioned. I'm honestly not expecting a page before Christmas since we are only listed for a perfect match...aka - his twin kidney! It happens, but it is rare. So placing him on the "anything" list, the docs think he will have a kidney by February. So January for a living donor, February for an angel donor.

This could be the end of our way of living...a way of living for over a year. I don't know any other way. It is both exciting and frightening. The trading of one set of problems for another. Trust me...I'd much rather have the transplant problems any day! :)I'm just nervous. I know what I'm doing now...pretty confident in my day and my knowledge. Soon, everything will change.

I'm getting ahead of myself and I'm rambling. I tend to do that when I'm nervous. I think this post has ended up being more for my mind than to keep my friends in "the loop". I do have a couple requests please:
Please keep our potential donor and her family in your prayers as she gears up for testing. Give them all peace, comfort and health during this time. It was SO much easier when I was the one to go under the knife for my son. That's what every mother should volunteer to do for their child. Take away the pain. But when someone else comes forward...it really leaves you speechless and grateful! (not to mention teary-eyed...often!) And please pray for Matthew. It is every mother's dream to see their son grow up healthy and strong. I don't want to bury a child. I can't imagine the pain. This surgery has the possibility of saving my family from that nightmare.

This surgery can give me the dreams of motherhood. A toddler that toddles without rickets holding him back, a child that has the option to be a picky eater because nothing is restricted, the freedom to stay home on rainy/cold days instead of fighting traffic to get to dialysis. I can be mommy more than nurse. Yes, I will still play nurse...I will always play nurse. I don't mind that. I just don't want him to play the "sick" boy anymore. I want a healthy boy for Christmas...please God...give me a healthy boy. Give him a kidney.

Meet Aubrey

I was working on an entry about premature awareness month for November, but then something happened. Something bigger than me, bigger than my small "platform" on prematurity (it will be coming later this week). Little Aubrey. Aubrey is an angel on Earth and if the insurance companies wouldn't spin out into oblivion by looking at how costly it would be...I'd promise Matthew off to her. :) Look at this face and just try to deny how cute she is!

I had the great joy of meeting sweet Aubrey this spring at Egleston. I was dear friends with her father in high school, but like with most friends...with the passing of time and the building of our families...will lost track of each other. I never dreamed I would meet Jeremy once again on the transplant floor of all places. It was both wonderful and awful to see him. We caught up 8 years in the thirty minutes before Matthew's dialysis run. And Matthew and Aubrey waved to each other in their respective strollers. I know God brought Jeremy's beautiful family back into my life for a reason, though I wish it could have been the fact that our kids were on the same soccer team instead. I know the doctors, I know the nurses, I know transplants...maybe I could give them some knowledge...in anyway possible. However, I don't know pediatric cancers.
You see little Aubrey is a big fighter. Late last year she was diagnosed with a very rare tumor called a Rhabdoid tumor. Her poor body endured numerous months of chemo before she was finally given the sweetest gift - the gift of life from an angel with a signed donor card. This summer, Aubrey was finally declared cancer free with the help of a liver transplant and God's healing grace. I shared Aubrey's miracle with my friends and family and all rejoiced for her and with us!
Last week, Aubrey's parents noticed some sort of mass in her abdomen, and after calling the transplant team, thought it was likely to be a hernia. After transplant clinic a few days later, it was determined NOT to be a hernia. It is "something", believed to be the Rhabdoid returning. Tests, biopsies and surgeries will follow this week with an official diagnosis.
As most of my friends know, I rarely ask for prayers (especially for myself or my family), but I humbly ask you know to pray for this family.

This loving, Christian family that has already received one miracle desperately needs another one right now. Please pray that the tumors are benign or that the tumors are a less agressive type, an type that responds to medicine and chemo quickly. Please pray that God will keep this family enfolded in His strong arms. Pray that both Michelle and Jeremy find wisdom, hope and comfort in the days and years to come. Pray that older sister Maddie finds security and happiness as her family is once again torn between two places. And pray for complete healing for Aubrey...here in her earthly home.
God, I know You have this all mapped out already...but please allow us a selfish request to keep an angel on Earth with her family. Help her story and her fight unite people to better love and serve You as You perform yet another miracle through her. Please God, encourage others to give their time and money to various children's hospitals through out the country this holiday season in honor of Aubrey and her past battle, her current fight. A big request, for a small person. Lord, hear our prayer.

Trust in the Lord with all your heart, and lean not on your own understanding; in all your ways acknowledge Him, and He shall direct your paths. (Prov 3.5-6)

Candles

2 Corinthians 4:6
For God, who said, "Let light shine out of darkness," made his light shine in our hearts to give us the light of the knowledge of the glory of God in the face of Christ.

Today is Pregnancy and Infant Loss Remembrance Day. Today people throughout the US and Canada will unite and light candles at 7pm to honor the tiniest and sweetest of lives. It's a day I grieve for my friends' children, the children I will wait to meet in my next home. It's a day I never knew existed until last year when a friend sent me grief support group information when we were told our son "was not compatible with life". My son is here, their child is not. It doesn't seem fair...

I'm an outsider looking in on a courageous group of women. I see the grace and strength in these women that I can not hold a candle to...but I will hold a candle for. I will light candles for their children - for what was and what will be one day. A light shines in the hearts of all of moms and dads and grandparents and siblings, a light to cover up the hole that is missing. But one day, that hole will be made whole again...just as their child was made whole and healed in heaven.

Personally, I felt like I was dealt a trick deck of cards in life. If two moms where told their child was not to make it, how come one is still here. Believe me, I'm grateful and delighted in the fact that Matthew is here, and I wouldn't change that for the world! Yes, he has had a hard life, but he has also known love, laughter and family. I feel, for lack of better word, guilty...especially to my PUV friends. Same diagnosis - different outcome. All because of a doctor? Doubt it. All because of a depth of love? HARDLY! All because of our faith in God? Maybe...

Perhaps our path to God was different...we needed to learn different things...be tested different ways. Like how someone endures a house fire and someone else is faced with life in a wheelchair. Each trial is hard, but each will teach different things. Ask a professional athlete which s/he would rather endure...then ask a millionaire. I bet answers might be different.

God's lessons are different for each of us too. And even though I've been through the grief of "loosing" my child, I've never buried a child. And even though their hearts hurt SO much for missing milestones, they rejoice their child missed the pain of living with his/her disease.

Please, at 7pm tonight, light a candle for all of the parents of angels. I will be lighting candles for Baby Nels, Baby Matthew and Baby Vayden - all PUV babies. Such beautiful boys, such beautiful mothers. Help remember them.

blessings you never knew

God never gives us more than we can handle - HA! He obviously doesn't KNOW me very well, OR maybe He knows me more than I know myself. I can honestly say my son Matthew's first year of life has put me through the ringer. Everything from the mundane (like stomach viruses) to the unheard (there is no urethra in your son). I'm thinking if things keep happening, then we (I) obviously missed the point the first time (or the 10th time) around. God wants me to learn something or reach a deeper level in my understanding.
Sometimes things happen after we have prayed for something else. We think God has forsaken us. Why is He doing this to me? What have I done to deserve this punishment? God can't possibly be the loving God I thought He was to put me through this! But He is!! Every hardship comes with a blessing. We may not see it right now, but it will show itself soon. Just because what we prayed for would be the "easy way", that doesn't mean it is the only way. God will see us through everything. His purpose is higher than ours, but it is for our own good.
I know I have hated everything that has had to happen to my son. I hated his past week when he was hospitalized again for blood pressure spikes and a high heart rate after hemodialysis. I KNOW the resident hated having to talk me (yes, I made my first resident cry). :P He deserved it though!! All of this happened for a reason for our family. This newest hospitalization helped me to realize that I will have to take a stand for my son, I'm not there to make friends or play nice. I need to play fair and be a watch dog over everything. My son is not there for them to "tweak" to their liking. I know he is unusual, but he is not a guinea pig! I HOPE the resident learned that no matter how much he thinks he knows, sometimes a momma really does know more. Book knowledge that he has retained has to be thrown out in respect to special circumstances that are individually linked to a certain individual.
If God hands you an unanswered prayer, just open your heart to the gift He is really bestowing. I'm sure it will be worth it in the end...even if it wasn't quite what WE wanted...it's what HE saw for us. And as the old saying goes - Father knows best.

A purpose

I feel so restless. I need to do something. Yes, my house is in shambles and the clean dishes in the dish washer are calling out to me...but that's not what I'm talking about. I need to fight, hug, cry and shout from the rooftops. I want to be an advocate for sick babies, both born and unborn...but I'm stumped on how to do it! I want to be an advocate to all of those, from day one to year one hundred, awaiting organ transplants...but just feel overwhelmed. I want to be a voice for those that can't find their's, but I can't find my way to them. My heart is leading me down a road to forget everything I had originally planned for my life, but my head is simply saying you are crazy and can't do it alone.
AARRRGGHHH! (No, I'm not a pirate...YES, I'm so frustrated). I think I will have a nice long chat with our social worker at Egleston on Friday. I wonder if I could start a support group of some kind...but for which group? Pregnant women with poor prognosis? Babies in danger? People awaiting the gift of life? It's a pickle I tell you, but I'm praying for answers and will post when I find them. Please pray and see how you factor into this...how you can help others in need. It only takes one person to start a chain reaction. I hope you can become a link and not a kink in this chain. :)

No fooling!

Happy April Fool's day...the day all 7 year old boys look forward to with great expectation...as well as a few "grown" men too. My mother used to always fool me and my brother every April Fool's day by waking us up a little bit early saying "it snowed last night!". And dumb as we were (snow in Atlanta...in APRIL??) we always jumped out of bed and ran to our respective windows. I'm sure I'll do the same to mine. ;) Carry on the tradition sort of thing.

But I also want to let everyone know something about April that you might not know about already: April is Donate Life month. I was never aware of it myself until December when Matthew went on hemo. This month is highly celebrated at the transplant center with guest speakers, support groups and prayers/memorials for those that didn't make it to get their gift of life.

Donation, both living and nonliving, is the single most precious gift you can give to someone. It is your choice! Yes, we believe it is our choice to have children and give life in that way, but God makes that ultimate decision. This gift of life is by our own free will...and trust me, that persons ENTIRE family will be forever grateful and humbled. The transplantation process is the "success story" of the medical world. To take out a failed or failing organ and give that person a second chance to do anything...remarkable! Giving hope, memories and time...you just can't buy that with a gift card!

We are less than 2 kilos away from starting up the testing process for Matthew. I pray every night that my bout with kidney stones back in 2000 will not hinder me from giving Matthew one of my kidneys!! Whenever my little one has a bad day, I think ahead to the promise of so much more for him...a normal life. A renewed life. LIFE!

Here are some donation facts I would like to share with you:
Despite continuing efforts at public education, misconceptions and inaccuracies about donation persist. Learn these facts to help you better understand organ, eye and tissue donation:

Fact: Anyone can be a potential donor regardless of age, race, or medical history.

Fact: All major religions in the United States support organ, eye and tissue donation and see it as the final act of love and generosity toward others.

Fact: If you are sick or injured and admitted to the hospital, the number one priority is to save your life. Organ, eye and tissue donation can only be considered after you are deceased.

Fact: When you are on the waiting list for an organ, what really counts is the severity of your illness, time spent waiting, blood type, and other important medical information, not your financial status or celebrity status.

Fact: An open casket funeral is possible for organ, eye and tissue donors. Through the entire donation process the body is treated with care, respect and dignity.

Fact: There is no cost to the donor or their family for organ or tissue donation.

Fact: Signing a donor card and a driver's license with an "organ donor" designation may not satisfy your state's requirements to become a donor. Be certain to take the necessary steps to be a donor and ensure that your family understands your wishes.

Please, consider donation and talk to your families. Many people are not aware of the possibility or do not want to talk to family members for fear of creating "issues". Talk to your family...please...for all the Matthew's in this world. Don't take away their chance to live.

Quick prayer request

I just want to put out a prayer request for the Harden family. A beautiful baby boy named Matthew has been born. He has the face of a cherub and the spirit of a warrior, unfortunately his lungs and kidneys were not as strong. He passed a few hours after his birth on Sunday. Keep his mother, Jenn along with her husband and two older children in your thoughts and prayers.
This little baby boy took a piece of my heart with him as he entered heaven. His puv diagnosis was SO similar to my Matthew's on timeline of finding out. I've been in contact with Jenn for a couple of months and am just deeply saddened for her, but also rejoicing with her that Matthew is at peace and feels nothing but joy and light. I will see her little son every time I look into my son's eyes. "God's gifts" are found now on earth and in heaven.
Please check out her blog and meet little Matthew.
http://themiracleofmatthew.blogspot.com/

In honor of

All of the babies born with PUVs, some that are walking miracles and others that are guardian angels. These little ones' strength and resilience is awe inspiring. No comic books here...they are your true super heros and role models.
I want to introduce you to an amazing family I have been blessed to share this experience of PUVs with: the Campbells. Kristin and Chris Campbell have a beautiful little boy, baby Nels. Baby Nels however had a bigger purpose in life and now is spreading his sunshine and love in Heaven in the arms of his Heavenly Father. Please watch the attached video via the link I post and say a pray for the Campbell family. For peace, compassion and to keep baby Nel's spirit alive and well on Earth. Keep in mind all of the many many little babies that have passed due to this and others suffering due to the complications.
Jeremiah 29:11

http://www.facebook.com/v/1092634268986

March

Every March, the National Kidney Foundation sponsors National Kidney Awareness Month, an educational outreach program aimed at raising awareness of kidney diseases. According to their education programs, approximately 8 million Americans suffer from reduced kidney function and up to 400,000 require dialysis or transplants to live.

For the rest of the month, many of the various kidney associations will be holding educational events and handing out kidney awareness bracelets. Early kidney disease has no symptoms and since people with diabetes or high blood pressure are particularly vulnerable, anyone suffering from those conditions are encouraged to test themselves often.

Here is a link to Matthew's hospital where he undergoes hemo and will eventually undergo his life changing transplant surgery. http://www.choa.org/default.aspx?id=694
Please, for the month and every month after, keep all of the patients, both children and adults, in your prayers. This is a rough disease that affects the entire family and not just the individual. Pray for the caretakers, doctors, nurses and extended family. Keep your health in check too. Is it time for you to go pee in a cup? Maybe this is the month to do so.

Lent

Oh, the Lenten season...the time period when you will hear nearly all Catholic men (or men married to Catholic women) grumbling on Friday that once again, we are having cheese pizza. Last year, my mind wasn't thinking about meat, besides...being pregnant, over 55, under 14 or under health restrictions...the church says not to give up meat. So, I didn't "give up" anything for Lent like I was always have done. I didn't fast on Ash Wednesday or Good Friday. Again...pregnant, but in reality the days just slipped by without a thought. My thoughts were consumed with my son and his well being. Guess I had a small taste of what Mary must have felt like watching her Son march to His death. I was watching my son tackle his own demons and standing by helplessly...letting God's will be done.
Usually I give up the standard of meat along with something else that is harder for me, more of a sacrifice. In the past some of my choices were my standard radio station for a Christian channel, potato chips (that was HARD) and ice cream.
Lent is a time to repent and reflect, to sacrifice something of ourselves for the ultimate sacrifice Jesus did for us and our souls. No, I do not believe God will be mad,sad or even give a second thought if we eat a hamburger. I do think His smile will be a bit broader when He sees we are trying to better ourselves, no matter how little, when He hears our quiet thank you for His sacrifice. Giving up food is often thought of as the easiest way, it just doesn't take much thought. Oh, I can't have chocolate...then I'll just snack on Skittles to get my sugar rush. Yeah...not exactly the true meaning of "giving up" huh?
Thinking back to last year, I realized I DID actually give up something. I gave up my selfish attempts of control. That was the hardest sacrifice I'd ever done. I look back now and see I was completely willing, though you couldn't tell through the fits, tears and all out temper tantrums I was going through. hee hee, pregnancy hormones...gotta love em! This year however, I'm up for another challenge...I'm going to give up my pride. I will swallow it down with a grain of salt and finally ask for help. Not necessarily for me, though it would be me if that makes sense, but for my family. Like I have said in a previous post, things are finally getting to be too much and I am at my breaking point. I yell at William simply for being a little boy, I huff and puff when Matthew spits up, I roll my eyes when Ian vents about his day at work...I'm not where I need to be. And my lack of patience is showing because everything else is all spent. My reserves are at the lowest they have ever been. Last night Ian and I prayed together. He prayed for me, for my strength, my health and my well being. I just cried. It was a good release. It was good to be cared for by my husband that I am supposed to dote over.
So am I asking for prayers for me, something I have never done! I ask for prayers for Matthew ALL the time but I don't like showing weakness...and asking for prayers for oneself...I always thought was a sign of weakness. I now realize it takes a lot of strength to do so. My first small step in overcoming my pride.

Prayer heals all wounds...

The term "faith healing" is sometimes used in reference to the belief of some Christians who hold that God heals people through the power of the Holy Spirit, sometimes, but not always involving the "laying on of hands". Of course, we should all turn to God on bended knee in both good and bad times. Pray in the Spirit on all occasions with all kinds of prayers and requests. Eph 6:18 But that is easier said than done. When things are going right in the world, most never think to offer a simple thank YOU to God...we just take happiness and health for granted. But the minute we fall on hard times: sickess, financial issues, marital problems or even just before taking an important exam, we suddenly remember God is there for us. He is there all the time! But actually, I'm getting away from myself (typical). I want to talk about the power of "true" prayer and how God answers.

To heal either mentally, emotionally or physically through prayer and meditation is still somewhat questioned and I guess will always be. Some don't know God and therefore are not aware of what He is capable of doing. Some refuse God and that is there choice, but I pray that something opens there heart and eyes to Him someday. Others just have to question everything anyway...it's their human nature and they need facts and proof documented to believe anything other than the fact that water is wet!

I am a firm believer in God healing those that have faith in Him through their prayers and the prayers of others. Exodus 15:26, Luke 4:40. My mother has been raised an extremely devout Catholic and my father a twice a year Baptist...what a combo huh? ;) I just consider myself a devout Christian with a Catholic upbringing. But if anyone out there is familar with the Catholic Church then you should be familiar with the life of St Bernadette in Lourdes, Frances.

Among the best-known accounts by Catholics of faith healings are those attributed to the intercession of the Virgin Mary at the grotto of Lourdes, and the remissions of life-threatening disease claimed by those who have applied for aid to Saint Jude, who is known as the "patron saint of lost causes". (just for the record, the Catholic Church sees this as a personal/private experience and not a public experience - if a Catholic does not believe the "story" that doesn't make them any more or any less Catholic) The Catholic Church has given official recognition to 67 miracles and 7,000 otherwise-inexplicable medical cures since Mother Mary first appeared in Lourdes in February 1858. These cures are subjected to intense medical scrutiny and are only recognized as authentic spiritual cures after a commission of doctors and scientists, called the Lourdes Medical Bureau, has ruled out any physical mechanism for the patient's recovery.

But again with my mother being devout, she is a firm believer in several Mary appearances through out the world and Our Mother's work in turning people back to the Son and Father, where their praise and prayer belong. Last Wednesday I met with my son's urologist and nephrologist and we scheduled surgery for my 10 week old baby boy for the following day. My mother came up to sit with me during the surgery since it was Ian's first week of work with the students in school and he has no time saved up yet to ask off. When I was bathing my little precious bundle and getting him dressed from his clothing to the hospital gown they gave us, my mother brought out a vial of water (in the form of a prescription medicine holder actually). My grandmother went on MANY trips in her retirement all over the world: Nova Scotia, Alaska, Mexico, Jerusalem and even Lourdes) When she was there she gathered a bit of the water from the spring and put it in one of her arthritis pill containers since she didn't have anything else. She asked if I would mind if she made the sign of the cross on Matthew's back (where his kidney's are) with the Lourde's water. I said no. I don't believe in magic, healing water coming out of the ground in France...but like I said, I am a firm believer in faithful prayer and it's healing power. God chooses whom He wants cured, and whom He does not, and by what means. Bernadette said, "One must have faith and pray; the water will have no virtue without faith."

I will post later on in the week about Matthew's condition (if you haven't been following along on his caringbridge site). I also wanted to say with deepest gratitude, thank you to Liz for her special prayer for Matthew at St Peters! It truly touched my heart (and made my mother cry) :) Thanks again!!

Can't help myself

We just came home from another week long hospital stay with critical levels of high potassium that eventually led to us moving up Matthew's surgery from Oct 1st to this past Thrusday. He did really well, but was in quite a bit of pain the following day. We came home yesterday afternoon...and now he is back up at the hospital.
He has a low grade fever, splotchiness, labored breathing and cries unconsoleably. It just breaks my heart. I had to get my husband to take him because I just couldn't bare hearing him scream in pain anymore. I know...bad mommy. :(
I just can't stand how much he has had to endure and how helpless I feel about it all. I'm in pain everytime he is in pain and my heart just can't take it right now. And that makes me feel even worse. Look at all he has been through, and I'm the one that sitting on the couch crying her eyes out. I just want to take it all away from him. I never thought I would say this, but I want to speed up time...go through his babyhood in a blur just to get to our transplant surgery. I know there will be more surgeries to follow on the heels of transplant, but he'll be older and stronger. It's just too much for him! He will be 10 weeks old on Thursday and he has only been home for 8 days of that. He has endured two surgeries, peritoneal dialysis, IV therapy, a premature birth, a strep infection and over 100 needle sticks in the form of shots, iv's and blood draws.
Is it not too much to ask that he can have ONE day of rest?? Doesn't he deserve a "normal" infancy like everyone else? Please God...I beg You!

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.

One week ago...

I became a mom for the second time! I received my little 4 lb gift 8 and a half weeks early, but one look at that tiny face makes all the hardships to come worth it! I'm slowly recovering from my emergency c-section, but keep over doing it in favor of visiting with my little miracle that is an hour away in an isolette at Scottish Rite children's hospital in Atlanta. Been very sore and busy this past week. And I'm off to pump some good stuff for my baby boy, Matthew Ian. Can't post too much for now, but I'll be back as soon as possible.
Here's a link to his birth story from a baby site I journal on for him to read one day: http://www.babycrowd.com/jr/online/krfm2003/

Please keep my precious bundle of joy in your prayers. We have a long road ahead of us, but have come a long way already.

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.