Mother's lullaby

A dream is a wish your heart makes
When you're fast asleep.

 In dreams you will lose your heartaches
Whatever you wish for, you keep.

 Have faith in your dreams and someday
Your rainbow will come smiling thru.
No matter how your heart is grieving
If you keep on believing,
the dream that you wish will come true.

 No matter how your heart is grieving
If you keep on believing,
The dream that you wish will come true.
So dream...

I would sing this song to Matthew every single day of my pregnancy with him. When he was upset and agitated in the NICU, I would sing it then too. His breathing rate would calm down and he would grasp my pinkie finger. 
I will never stop dreaming, nor will I stop believing in the power of prayer...even if the answer isn't what we had planned.
Please say a prayer for little Jace, a three year old charmer that finally got the wish and dream his mother has been asking for him since birth - he is completely healed today and holding hands with Jesus.
It's bittersweet to say good bye so often to so many little ones. On one hand I rejoice! They NEVER have to endure another surgery, needle poke, biopsy, or procedure. They don't have to be hurting, be afraid or be different any longer. The uncertainty is finally gone; your child is finally at peace and healthy for the first time. 
Then my heart grieves, knowing I will have a lifetime until I can see him again.
I will keep believing that all things happen for a reason. A reason beyond my understanding sometimes. A reason to dream of what is to come - happiness...a dream come true.

The test

I was one of "those" students. The few that actually cared about my grades. I would enter into friendly competitions with my friends about scores on exams. I had a photographic memory that when I looked at a couple of pages prior to a test, would ensure an A+. If I was too busy flirting (which happened a LOT) then I would scoot by with an A-. Never had test anxiety and always the first to turn it back in to the teacher. Yep...I was a nerd. :)
Since I've entered the "real" world, I've never had to solve a physics problem without the aid of a formula. I've never had to multiply by decimals without a calculator in hand. I can easily use spell check or my co-worker if I come across a word that I can't remember the correct spelling. Frankly, the education system taught me many things (stoichiometry anyone?), but I wasn't prepared for the BIG test.
A test from God. A test I have unfortunately failed.
Often in my life, since my son Matthew's birth, I feel like I failed him in some way. He was born without a urethra, and it caused irreversible kidney damage when his urine back-flowed while in utero. I even went as far as blaming God for not making me strong enough to make him perfectly, without this defect that would be life changing and one day....may be life ending.
Due to this one little defect, a missing link of tubing that is connected to the bladder, my son has endured 26 surgeries in his short 3 years of life, including a kidney transplant. He had a beginning at the bladder and an end at the tip, but nothing in the middle. I was told the doctors might be able to reconstruct a urethra for him one day, but it would be complicated and might not work.
Through out these past four years (well, 4 years in 3 days - as that is the day we found out about Matthew's condition during my pregnancy) our family has been tested. I've been tested. Tested to give up control (a HUGE thing for me!) and as I have said often "let go, and let God". I had THOUGHT I had done this.
I have given my son's life to God. Both before and after his birth. When I failed the medical exams for being a donor to Matthew, I once again left it up to God. And WOW! He showed me He really did know better! I thought life and death was enough. Now I've learned it isn't.
Yesterday, my son was scheduled to have another operation. Shortly after beginning, I was told to meet the surgeon in the consult room. The doctor informed me they didn't do the surgery as planned, purely because there now wasn't a need. Matthew has GROWN a fully functioning and complete urethra! The doctor, the same one that has been working on my son since birth, couldn't explain what had happened. He just shook his head and smiled. He said if he had only looked once before, then maybe he might have missed something. But he's looked MANY times - several on ultrasound, VCUG scans and even opening him up to do exploratory surgery...nothing. Nothing even in October when Matthew had his last scan.
Now all of a sudden - something!
Something fully healed and perfectly made.
Just how my son was made. Just how God made my son.
I know understand my test. My feeling of failure was purely a selfish and unnecessary issue with my own sense of pride. I didn't fail him. God made him in a way to show me that...that's it's not about me! It never was. God made Matthew to do things that the doctors said he never could. God made Matthew to take matters in his own hands, inside his own body to heal and prove them wrong.
That things can't always be explained by science and medicine...somethings are just left to God's timing. Perfect timing. For a perfect boy...that was perfectly created. And I am perfectly thrilled to know I had absolutely no part in this miraculous healing.

Going with the Woe

Bad things happen to good people. Things not in our control; things that leave us shaking our heads; things that make us ask "why my family?". A five year old little boy is dying from cancer. Cancer caused by the medicines his body needed to keep his transplanted kidney. There is a fifteen year old daughter and sister, who was unable to attend her parents' and siblings' funeral because she was still hospitalized in Florida while they were buried back home in metro Atlanta. Random acts of violence, natural disasters and even house fires turn many families lives and dreams upside down.
It would be easy to give into the "woe is me" mentality. I've done it. Woe is me for having to watch my son go through so much. Woe is me for having to spend so much time away from my husband and other son, because my baby needs me right now. Woe is me, another year without a vacation...gotta save that many for medical co-pays. Then I hear about a child losing their fight... and once again I am grateful.
It shouldn't be that way! We should always be grateful! It shouldn't take bad news to make us feel happier about our life and all the blessings in it.
I know there is a greater certainty that I will outlive my son.
That knowledge has left me breathless and broken-hearted. I can't count the times I have crumbled in the middle of the night, wracked by sobs of sorrow. The only balm I have - is right now. Whenever my fear creeps in, the uncertainty seeps through or the darkness covers my rays of happiness...I just look at him. And I'm grateful.
Grateful to have this experience. Grateful for whatever time we have together, whether it be counted in days or decades...it's more time than I was told we would have before he was born.
So instead of letting the "woes" build up - we let them go. Turning woe into wonder, sorrow into smiles and fear into faith. Faith that we will handle anything that comes our way. Smiles that we made it together this far. Wonder in the normal, everyday experiences we get to share.
If my son has to fight bigger battles ahead and tells me he is tired, then I will let him go...and I won't have any "woe". There will only be the joy of what we had.

The Christmas Present

I've been stewing over gifts for the past couple of days. I've been done with the family shopping since October, but now is the time for teachers, para-pros and therapists to be added to the list. What makes a "good" gift? Something useful or creative? Something homemade or store bought? Something costing nothing but time and love or something with a high price tag?

I've come to the conclusion it's not about the gift...it's about the present. The present meaning the here and now. Don't take it for granted. No one thinks that in the midst of the light cast by the Christmas tree and the platters of food on the table, that next year could be different. Unfortunately for a lot of my friends, this Christmas will be different...their child will not be listening for Santa's bells on his sleigh, they will not be setting out cookies and milk, their eyes will not light up in wonder on Christmas morning. They will instead be celebrating with Christ Himself in Heaven. No, don't take the present for granted.

Christmas is about a child, one small child born in a manger. Christmas is about children and family and togetherness. Nothing else matters. The rest is just "stuff". I don't reminisce about which stocking hung where, the way the lights were strung on the tree or the wreath hanging on the front door. I remember making cookies and decorating with sprinkles with my mom. I remember riding around the neighborhood with my family each Saturday night to pick out the prettiest decked out house. I remember watching movies on Christmas Eve with my grandmother playing with my hair while I sat next to grandaddy. I remember the PEOPLE and the memories I had with them. Not the THINGS surrounding us.

I am now making memories with my children...the two little people (and all of the wonderful families I have met because of them) that have taught me not to take things for granted. That we are not promised tomorrow. That right now is all we have and we have to make the most of it. Please don't get lost in the glitter and glam of Christmas. Don't put off next year, what can be done this year. Dusting the coffee table can wait, dusting the lawn with reindeer food with your kids - can't. Make memories and make the most of what you have. The gift of the present. And when you get overwhelmed, don't turn to the beauty of your Christmas tree, turn to the beauty of the Child that we celebrate. There you will find peace.

Merry Christmas!

happy people

From the moment you wake up until the moment you fall back asleep, you are constantly making decisions. Some require more thought than others like buying a house or car and others not so much like what to cook for dinner. One choice can affect another. The choice to hit the snooze button three times can now take away your choice of stopping for a cup of coffee on your way to work. And when a choice is taken away, you have yet another choice of how to react to it. You can react positively or negatively.

Someone that chose to wake up happy that morning would say that at least they have a couple of extra bucks in their wallet and can splurge on an appetizer for lunch now. Those that chose to wake up unhappy, just grumble and complain and whine about anything and everything for the remainder of the day.

What a minute...back up...you say someone CHOSE to wake up unhappy?? Why yes, yes I did. It is a choice! You choose how you feel that day. Granted, bad days happen and no one that I have ever met is happy one hundred percent of the time. I don't often run into people that are laughing when they put their old, sick pet down at the vet! But you still can be happy that day, even while you are sad.

HOW?!? Happiness should not be defined as pleasure. You can find pleasure in eating a huge chocolate sundae, but not happy about what it is doing to your body. I believe happiness is joy and gratitude. You can find it anywhere - reading one of your favorite childhood stories to your child. Holding a 3 week old puppy. Watching your parents re-new their wedding vows.

Happiness is quite simple actually. It's a simple emotion. It is something everyone is striving for, but no one is happy once they reach it. They always want more. Never realizing what they have at that moment. Yes, I want more trips to Disney World. I want to win the free groceries for a year contest. I want the housekeeper to come daily so I can spend my time playing with my sons. But I'm happy with what I have...and even what I don't have.

I don't have a lot of money, so I appreciate that the good things in life are free. I don't have a lot of time, so I cherish the moments. I do have problems that arise, and I'm thankful my brain (mostly) works with me to help me solve it. I do have a messy house, and I'm grateful that my children have the ability to walk and play and make that mess.

I simply wish to spread happiness to those that don't realize they have had it all along. Luckily for us, happiness spreads as easily as a cold virus. Catch it, spread it. Be grateful, be joyful, be happy!

Where did mommy go?

Psst - it's me - I'm hiding...in the bathroom. Don't roll your eyes at me, if you are a stay at home mom, I will bet my life savings (which is NOT much actually) that you have a hiding place too!
Every SAHM craves conversation with someone. And boy howdy do we get it! What's that? Where's that go? Why did you do that? What are you doing now? Can I do it? Look at this. Watch me. Mommy, mommy, mommy, mommy, mommy, mommy. And my "favorite" oops! And then when we get the chance to talk to an adult (our endearing honey bunny), we don't even have the energy! Working parent - how did your day go sweetheart? Home bound parent - lifts head up off the kitchen table and grunts, places head back down.
To insure more energy and a better balanced mood when my hubby arrives, I take "mini-breaks" in the bathroom. Mommies all over the world "potty" a lot. I "potty" to have a minute to myself when I have cranky kids - reminding myself that I do LOVE them even when I don't LIKE them at that moment in time. I "potty" when there is only one cookie left, I am PMSing and really don't feel like sharing! I figured I shared food with you for 9 months - this cookie is mine kid! I "potty" to make important phone calls. Our transplant coordinator always wonders why I echo on the phone.... ;)

I always thought my mother's bladder was the size of a peanut when I was little. Now I get it - now I GET IT! Back in 2 minutes :)

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.

twenty four

24 - the number of times my son has been wheeled into the OR.
4-6 - the number of hours I will wait for this particularly surgery to be finished.
2 - the number of nights we "should" be staying
4 - the number of nights I packed to stay ;)
3:00 - when we turn his feed pump (filled with pedialyte) off tonight
7:15 - when they will begin to give my son his chance of "normal"

Does this get easier? Yes, it actually does.
Does this get hardier? Yes, it actually does.

I know how to calm my son down; I know what to expect from him and from the hospital staff. I know I have a say in the care and treatment of my son. I know I have the prayers and thoughts of my friends and family. They lift me up, inspiring me to go a little more past exhaustion and despair - to get to the other side where I find joy and peace.
I also know Matthew's anxiety will be terrible. I know he will shriek, throw things, try to hurt himself and continually ask "why" and telling me "no". I know he will be in pain, physically and mentally. I know he will not sleep because he will be frightened, and I know tomorrow night will be a long night of no sleep for me either. That's ok - that's what mommy's are for after all.
Knowing what is to be expected, does not mean I know everything that will happen. Complications, set backs, infections or any other number of issues that arise. Of those, I'm terrified. I don't know why I haven't been frightened by them before...I guess everything was so cut and dry, black and white back then. None of his surgeries have been "elective". Though this one is not "elective" either - it is to keep his kidney is better shape long term without the reflux and high pressure damaging it - it just seems more discretionary...like we have more a choice to do this one or not.
And because of that, I'm having a hard time with the risks. Before, if something went wrong (and it often did) it was always better than the alternative of not having the surgery done...which ultimately would have led to death. Now, it leads to a slow progression of kidney failure. But honestly...isn't that what everyone with a kidney transplant is experiencing? You just wait til your labs are bad enough to say you need to start making calls again and they stick you on a list? I don't know. I'm not scared for him per se... I think I'm actually scared for me!
I've never been scared for me! I'm always the nut case running up and down the halls laughing that we are "one more surgery closer to transplant". During transplant, the days leading up to it and the day of, NO butterflies! Just pure gratitude and peace! Now - I'm a bundle of nerves! Go figure! It only took 24 to get me there!

I wanted to include a song that some of my "kidney moms" lean on and rely on (since 90% of our kidney babies are boys) I just wanted to share it with you and ask for your prayers for a smooth surgery, a complication free recovery and a very short hospital stay. Please pray for Matthew's mind and soul - those are the scars that don't show, but run deepest and worry me the most. Thank you.
http://www.youtube.com/watch?v=3YK3JR-4Wpg&feature=related
http://www.youtube.com/watch?v=3YK3JR-4Wpg&feature=related

It's FINAL

My heart is heavy tonight. There is a couple in a group I belong to that have made the decision to terminate their son that has a bladder obstruction, much like Matthew and many of Matthew's friends did. The doctors recommended termination since they believe the baby to already be in kidney failure. They have agreed.
It is not my place to judge them or their circumstances, but I can't help but feel for that poor boy that will not be given a chance. They insist he will not make it alive or will face many painful interventions. He might, but you don't know...you're not letting him see how much of a fighter he is. They say at 17 weeks (the age he is now, though the abortion hasn't been scheduled yet) that the baby won't feel pain until he is 21 weeks. I disagree. Matthew felt pain. He felt the needles for the bladder taps and the needles to put him to sleep for the surgeries. Those started at 17 weeks. He was cowering from the needles the following week when the tip touched him. He would curl up on himself and recoil to the opposite side of my uterus. He knew it would hurt him. It made me sad, but it was a necessary evil if I wanted to hold him while his heart beat.
I often asked myself if I was being selfish - for making him go through so much before he was even born only to be thrust into a world of surgeries and procedures when he did finally arrive. So I gave my son to God. I was allowed 15 minutes of "on feet" time during my pregnancy between fetal surgeries and I would spend those in the shower. I would sing hymns and cry. I couldn't do it in front of my then two year old son, William. It confused him and made him scared, so I reserved it for MY time. I would tell God to take him if He needed him. But if I was able to keep him, even for a short time - I would make it known to all what a miracle he was and to NEVER give up hope. God can create mountains and the moon - He can heal a baby, regardless of what a doctor...a mere man says. I told God I was going to try everything I could to keep him alive, if He would let me know when it was time to let go.
I never let go. I'm still holding on. I'm holding on for dear life, my life...as my children ARE my life. But I know God and I still have our agreement. When it is time, and if that time comes before my time, God will heal him and take care of him for me until I can get there. I would trust in God and His word to me. Not the doctors. I would not terminate nor would I stop treatments or surgeries that could save my son. That was my final decision. To leave things open to the ultimate Healer. To not make things so final.

It's not Dumbo

Alright, we know how to help out the elephant's caretaker, but what about the one riding the elephant night and day. Wait, let me re-phrase that...what about the one tugging this 8 ton weight on his/her shoulders? The one that has to deal with the symptoms, surgeries, procedures and numerous hospital stays. How do we help them carry their burden?

I'm going to tell you something that you may find odd - do not treat them different! Have you ever reacted badly, or worse...not reacted at all to someone walking in a building with a elephant on their back? Have you ever turned your head away from a child in a wheel chair? Are you guilty of rolling your eyes when your dinner is "ruined" by someone suffering from Autism or Tourette's syndrome as they scream and shout due to some trigger that set them off? Have you ever whispered behind your hand to another person as you watch someone receive a treatment of some sort that might be shocking to you, as you have never witnessed it before? Come on, admit it. I can guarantee that everyone has done at least ONE of those things at some point in their life, whether they were 5 or 50. I know I have. :(
Don't be scared to make eye contact, smile and say hi to someone with an elephant. Yes, carrying an elephant around can form thick skin and calluses, but their hearts are still very tender. They know something is different about them, their lives. But they still need friends, love and a gentle touch. Can it be overwhelming - absolutely! Matthew had many visitors in the NICU when he was born - both family and friends. I remember the reaction of each person when they met him for the first time...95% of them cried. It is intimidating seeing a baby just shy of 4 pounds hooked up to so much stuff, but I can tell him how loved he was that so many people went out of their way to see him.
It's alright to be curious; it's ok to ask questions. Please do! If the elephant handler is too young to answer - ask the zoo keeper! Even if you do not know them! Trust me, it's OK. Yesterday, Matthew did NOT want to nap (stinking three year old transition time) so off when went to a nearby playground. There was a little boy there already when we showed up. William and the boy took off fighting invisible zombies (I think they watch too much Scooby Doo!) Since we were out in the middle of the afternoon, I had to bring Matthew's supplies for water boluses. As I was taking out the syringe and placing it in Matthew's g-tube extension, the little boy walks over. "what are you doing to him?!?" (The look of astonishment on his face was priceless by the way) ;) I told him that this was the way Matthew took in food and drink. He asked more question, and I answered them. His mom had come over as well and we talked too. When I gave Matthew a small cup with water in it to try and get him to take a sip (and he did - YAY), the little boy clapped louder than any of us on Matthew's victory. Such a small thing, with so much meaning. It meant he was pulling for my little elephant handler and celebrating his accomplishments. Naturally us moms traded phone numbers and will meet back up soon.
An elephant handler does not need a free cruise or to meet the popular NFL star of the year, they just need to be accepted. In the littlest of ways - a smile, a playdate or a hug. No need to go above the call of duty. No need to change your life around or do anything out of the ordinary. Just say Hi when you come across one. You'll see their back straighten and their shoulders lift. That elephant won't be so heavy for the remainder of the day. And that means a lot.