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!

shoes

Have you ever needed a certain pair of shoes for an event and borrowed some from a friend? They don't really fit right do they? They are already molded to their owner's feet - not yours. Good news - you get to take them off eventually.
However some people are left wearing their shoes for much longer. The grow to be uncomfortable and tight. They pinch the toes and blister the heels. You long for another pair - a pair made just for you...your comfort in mind. But you are left waiting it out. And even though your feet are swollen and aching, and your shoes are scuffed and worn out...you appreciate the fact that they were given to you.
My shoes were given to me the day Matthew was born. I don't know who the previous owner was, but I am grateful for the hand-me-downs. The shoes I had were "caretaker" shoes, and they are the hardest shoes to fill!
Whether you are caring for your mother during hip replacement and rehab or a cousin with leukemia...it is equally daunting. It is never ending. There are no ribbons for first place - there is life. You won't get a medal for going the longest without sleep - you'll get exhausted. If you can not find the energy to bathe and feed yourself at the end of the day, then you'll just be smelly and hungry that night.
No one understands a caretaker more than another caretaker. We all hope for the other one that their amount of time in our shoes is short. But some will never take off their shoes - ever. Some mothers to babies with debilitating diseases will never know what it is like to soak their feet in a pool of warm water. They will leave this world only with worry in their hearts as they wonder who will watch after their child now that they are sick and leaving.
I'm lucky! I was able to upgrade. I left my painful shoes at the door and took up new ones that only give me some discomfort once in awhile. ;) At the end of the day, when all are asleep...I take off my shoes and rub my aching feet. I put them back on in the morning, wearing them with pride. How can I not smile with Matthew by my side! (totally didn't mean for that to rhyme...that's how if flowed in my mind!)
How are your shoes fitting? Could you stand for them to be a little tighter? I'm sure most of you could. Go volunteer at a hospital, homeless shelter or nursing home. Help someone by enabling them to take off their shoes and breathe a sigh of relief - just for a moment. It will mean the world to them!

The best medicine

Our little family has been through lots of medicines and supplements - especially in the past nearly three years (when I found out I was pregnant). Some work wonders right away, others take some time for the body to adjust to it. A lucky few have no side effects (or no side effects worth mentioning at least) and others....AAAAHHHHHH! Do you want to know what my favorite is?
A smile. From a stranger in the hospital halls, a doctor that is just as frustrated as I am, my children (their smiles light up my entire life) or even an old photograph of simpler times with smiling friends. Smiles are therapeutic.

William - 8 months old as Charlie Brown

Have you ever had the thought that things just possibly can't get any worse? Ask that to the parents that buried their child last week; the parents in the PICU today watching the clock and hoping they are granted another hour to hear their child's soft breath. Maybe this is just a sensitive subject for me in general. I've invited myself to my own pity party a couple of times for my own son's situation. Luckily, I just make an appearance - see the party is really a drag - and then get the Hell out of there! I don't know...even though I know life has been rough for my son sometimes...I just can't shake the feeling of "wow - how lucky are we!"

Matthew's last surgery and hospitalization before transplant

Two of our kidney friends are having a rough time at the moment. It affects me...maybe more than it should. But I can't help but put myself in their shoes...knowing that one day...it could easily be my son. I think making the hospital rounds so often in a young life, you do feel a connection and an empathy that perhaps others do not. I know I didn't - until it happened to me. When William was sick with a high fever and vomiting at 10 months old - I just thought the world needed to stop for us on the way to the ER. Now I see I overreacted a wee bit. ;) But it was my child in distress. Now when that happens, I offer up a little praise that it's just a virus and will run its course, happy to know it isn't something scary!
And when I find myself getting overwhelmed - I smile to myself. I might look a bit goofy to someone passing by, but I'm pretty goofy looking naturally already. ;) I have smiled while rocking a screaming, hungry and mighty angry 2 month old that was waiting for his turn in the OR, because it was one step closer to our goal of transplant. I've smiled through the vaccines of my first born, knowing all the pain he would be kept from in the future with just a couple of tiny pricks. I've smiled as my husband has boarded a cutter in the coast guard during our first year of marriage, because I knew eventually he would come back. I've smiled as I have visited my grandparents' graves, because now they are truly at peace.



Yes, smiling is often underrated. It helps. It heals. It doesn't take away all of the pain, but it acts as a rainbow during the storm. The promise that one day, the smile will be real...even if you think it won't. Just smile.

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.

Shut up Karen!

The other night I was in the car of a friend of mine after attending a pampered chef meeting with her (I honestly was just there for the food). We ended up talking about the trials of life...and motherhood. She has lost twins via a miscarriage and also had to deal with NICU nightmares due to a blood disorder with two of her three children. Luckily, they are happy, healthy and thriving now with no complications of their earlier ordeals. Yet, I found myself in tears as she asked me how I deal with the day to day care of Matthew.
I have never lost a child. Two pregnancies...two kiddos. I've never been seriously injured, nor do I deal with any medical issues that tie me down. Yes...I've had issues with animals...like getting my lip bitten off by a dog and getting attacked by a squirrel that attached itself to me like toliet paper to panty hose - that's another post all on its own! My son's "illness" is treatable...unlike many others. Yet, I just got down.
I guess that's allowed, but I don't like admitting it. People (whom I don't even know) say I am strong for dealing with all this with a sense of humor and a thank you to God. But honestly, can you tell me you would do any different if it were your child. If there is a problem: fix it, a boo-boo: kiss it, a non-working kidney: give him your spare!
But I look to the future and hate that my son will be labeled "different". He will have scars covering his abdomen from surgeries past and surgeries yet to be. He will be cathing himself in the bathroom stall instead of using a urinal. He will be infertile since the tubes are not connected or formed as they should be. He will be on drugs that will fight off organ rejection along with his immune system. So a cold will become bronchitis and the flu will become pneumonia. It will never just be "the sniffles". It will be a fear that this virus will cause dehydration. Dehydration will cause a rise in creatinine. A rise in creatinine will mean rejection. Rejection means we have to do this whole mess all over again. It's just mind boggling!
But I'm putting it down. (even though realistically...it will rear it's ugly head again everytime he runs a fever) I WILL not think about such things when he is healthy. What is the point other than to drive myself insane? And when it does happen and we have to do it all again...at least I'll know what to expect. And I know we'll get through it...like we have before. We've gotten through everything so far. Even the things I didn't think I could tolerate to make it through to the next morning...we have. Matthew has...wow...what a fighter he is!
HE has gotten everyone through their trials, and there are trials that are SO much worse than kidney failure! Kidney failure is a walk in the park next to some of my blog friends' trials. And they have come through with grace and dignity. Offering up their praise and suffering to their heavenly Father. I have no right to complain. We are good here. I have no need for tears. We are blessed here. I have no need to worry about the future. We have God here.

Keeping count

It's Easter weekend. And much rejoicing will be done through out the world. Here's a snapshot from my world. Are you counting your blessings this Easter?







I hope everyone has a beautiful Easter with friends and family...and chocolate. :)

Sweetest Day

Today was the best visit to the NICU. Ian and I both got to hold Matthew, which we have done before a few times...but I was able to nurse Matthew for the first time. It just warmed my heart. I was giggling while my eyes were filling with happy tears. I was touched by his little hand resting on my bare chest and his little face nuzzled tightly into my skin. So sweet! He also surprised EVERYONE, me included, when he actually did nurse. They just expected him to "play around" and get use to the idea with out accomplishing anything...but that kid went to TOWN! Yowza! I am just so proud and happy. The doctor's even told us we will be starting out training at Egleston's Children's Hospital near Emory for outpatient dialysis. This means we are in the homestretch. They said they would send us to training when Matthew was a couple of weeks out from coming home! I need to get his nursery ready!!! AAAHHHH! I'm so excited! Paint samples, here I come! :)