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 :)

one person

I've been asked recently how do I keep going with all of Matthew's needs, William's needs, the dog, the house, myself when Ian is gone for extended periods of time. Well, in all honesty, it's not much of a difference in care when he is here.
Now that sounds bad actually. My husband does an astronomical amount of work around here, especially in helping with the house! I got one of the good ones I say. I cook - he cleans, I wash clothes - he folds them, I tidy the clutter - he vacuums the floor. See! Gotta a GOOD one! :)
He's also a huge help with the kids, both kids. If I need to go to the grocery store, he handles the fort. If I'm exhausted, moody (it happens monthly you know) or am driving to the hospital the next morning, Ian handles all of the night feedings and diaper changes. (He goes through THREE diapers at night people!) But during the day, the kids are on me. 99% of Matthew is on me too.
When you have a child that has specific things that need to be done, either specific measurements, specific times, specific methods...it's just easier when one person handles it all. When both of us are home on the weekend, it's never a halvsies situation. We've done that before and it's been an issue. I would bolus Matthew 30 mls and then Ian would come right behind me not 20 seconds later giving him another 30mils - and here comes the puke! Fortunately we have never done it, but I've known other parents to double up on medicine, unknowingly giving the same dose twice. But we have been late giving medicines before - thinking the other one had done it. Now it is just set.
It's a lot of responsibility for one person, but even more for two people. Ian knows how to do it all if I am gone for whatever reason. He has no issues with it...though he is out of practice and if you are ever out with me to dinner or something - we WILL get interrupted by repeated phone calls. ;)
What does it mean to have Ian home. It means sanity (any mom of a 2 yr old and 4 yr old will tell you that!). It means companionship (gets mighty lonely when the boys are in bed and the house is quiet). It means camaraderie (taking turns who gets to wake up at 6:30am with Matthew or 8am with William). It means love (I think that one is pretty self explanatory). It means being able to vent and laugh, to clap and to be held, to worry with and to be reassured.
I miss him. Even for this short time...I miss him even when he is gone just for a weekend! But he has his duties and I have mine. I am mommy. It all comes with the territory, even the demands that weren't necessarily in the "What to Expect" books.
I'm just SO thankful this didn't happen when we were at hemo three times a week! Whew!

Oldie but goodie

Yes, MANY special/medical needs moms swear by this writing. It completely sums up our way of life perfectly and helps others to understand. We don't want pity, we don't want awards, we don't want recognition...we just want the best for our children.
So - without further ado, I give you Holland. :) It's a GREAT place to be!

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Mother's day

Yeah I know - I'm a slacker. Sorry. Two "healthy" kids is a lot more to keep up with than one sick baby that took three naps and another child that would take three hour naps. Yes, things have changed! First, I want to thank Marie for allowing me to be a mom to two healthy boys. Without her, this mother's day would be very different. I would still be a mother of two, but I might not have been able to hold and hug on two sweet boys like I did today. Thank you for making that possible.

Did you know that I'm actually not a "fan" of mother's day? Just like I'm not really a fan of Valentine's day. Oh yes, I've COMPLETELY enjoyed my day today! It was wonderful and I'm ready for another day like it...tomorrow? :) Guess not... A day that didn't start until 11:30am when I finally got out of bed after breakfast, snuggles, presents and just relaxing and reading a book. I've been "off duty" today - no meds, no tube feeds, no grilling cheese sandwiches, no diapers, no reminding to wash hands - no worries...only the "good" stuff. :) The best present was the wildflower William picked for me when I came back home from shopping this afternoon.

But there are many moms that are not enjoying this day. Moms whose baby boy is off in Iraq. Moms whose little girl passed of cancer. Moms that have been separated from their children due to car accidents, disease, drugs, disasters and custody battles. Moms whose arms are empty and their hearts are full. Moms who never met their little one and cling to an ultrasound picture. Moms that know it is unnatural to bury your child, when they are supposed to bury you. Ladies that are moms in their heart, but due to health, society or culture can't become the "mom" you and I would recognize on the street.

Moms are everywhere - teachers, nurses, counselors, girl/boy scout leaders, bakers, secretaries and ministers. Being a mom is not biological. Being a mom is not a right. Being a mom is a reward. A precious gift that many take for granted. Just because you have five children, that does not make you any more "mom" than someone with one. Just because your child has special needs or is gifted in music does not make you more "mom" than the stereotypical soccer mom in a minivan.

A mom by heart, because not all moms give birth, have a fierce love for their children. A protectiveness that is so powerful it is hard to describe the depth some mothers would go to for their children. All mothers wish to keep their child from pain, rejection, fear and just general unpleasantness. Being a mother is giving yourself the smallest slice of birthday cake in favor of your family getting their fill of sweet moments. Being a mother means not caring if you are up all hours of the night with a newborn, it's wonderful just rocking them in stillness with no interruptions. A mother knows what you are up to, because chances are she tried to do it herself 30 years ago. Moms smile at the gifts of both dandelions and worms, because they were given by her child that sees joy in everything. Moms kiss scraped knees, rub sour tummies and come armed with a can of magic away monster spray.

But some moms put their child on an airplane to bootcamp. Some mothers place tiny bundles into a grave. Somewhere a mother is fighting over where they can possibly stick a new IV, instead of please eat your broccoli. A first time mom is sitting in disbelief that her child, the one she has prayed for her entire 9 years of marriage, as a congenital birth defect that is not compatible with life, instead of wondering what to wear to her baby shower. A mom has been told the tumor has grown, instead of being told her child is in the 75% percentile for height. Another mom is letting her "baby" of 12 years go and deciding to give life saving parts of her child to other children in need, instead of sharing hand me down clothes. Another mom was just told her third try at IVF has failed once again, instead of figuring out how to install a carseat. Somewhere a mom has run to the phone for two years every time it has rang with hope in her heart that they finally found him, instead of refusing to pick it up incase it is a telemarketer.

So today, I'm thinking of the moms that are not recognized. The heartbroken, the weary, the strained and the rejected. And yet they are strong, amazing, resilient and awe-inspiring (though you could never tell them that!). Today is for you. Today is for your memories, your future. Today is all about you and your child(ren). Happy Mother's day, in the shameful event that no one told you that today.

Back to the drawing board

OK, so it looks like grandma will not be able to donate. She didn't pass her glucose tolerance test. It would not have been any harm towards Matthew, but the transplant team will not take a kidney from someone that may be pre-diabetic. Diabetes is usually the number one route to dialysis in adults. She is attempting to re-take the test again tomorrow. We are not optimistic, but it will make her feel better. The pass level for the 2hr test is 140 at the end or lower, she was at 162. I told her not to worry about it, Matthew will get his kidney. Whether it comes from her, me or an angel with a signed donor card...I don't know...but it WILL happen! And that is what is important.
Of course she wants what is best for her child (me). No mom wants their child to go into surgery...especially the same day their grandchild goes into surgery! She wants to make this as easy as possible for me. She knows that if I'm recovery from surgery, I can't help Matthew recover from surgery as much as I will want to. And she also knows that I will put myself at risk and do more than I should just to be with him. Yes, I'm aware of the cardinal rule - take care of mom so she can take care of the kids. But I don't follow it. (I better check to make sure no one at Emory is reading this...)
But through this journey of my possible organ donation to my son, I will chronicle the highs and lows. The pain and the praise. The heartfelt and headache! I want to use this opportunity to share with others the ins and outs of organ donation with others that have a natural curiosity or who may someday consider being a donor to a friend or family member. I hope to shed light on the experience and take away the mystery of it all. I will be brutally honest with facts and my opinions of them.
I have also (with the aid of some bloggy friends) put labels in the left hand column of the screen. Everything I share in regards to the transplant of course will be labeled under "transplant surgery". I have all of Matthew's recipient story on his caringbridge site and will update that as I always have with his side of the journey. I hope you are able to join us for both in prayer and praise as we get little Matthew moving on to the fast track of good health!

The Band Aid

So, what is your favorite bandaid? I am quite partial to the Garfield ones...I love that cat. ;) My three year old is obesessed with Scooby Doo...though he's never even seen the cartoon. Go figure! We are about to embark on a journey of bandaids...they will look like 4 inch scars on my sons abdomen. The name is called kidney transplant.

Yes, a kidney transplant is just like a Garfield bandaid. It brings a smile to your lips looking at it, covers the wound so you can't see it anymore...but deep down you know it is still there. And sooner or later, really hoping for MUCH later, the bandaid starts to unstick and you need to replace it.

Now bear with me as I do something I don't let myself do very often. I'm going to bitch. Hey - I really don't do it all that much...just in traffic, and at the grocery store and when I'm PMSing...maybe I should just stop typing. Anyway, I'm not meaning this on any one person or even every person I've ever talked to about Matthew...I just have to release it somewhere and don't won't to burden others with my moodiness.

We are on our way to a new life, for our family and for Matthew. I couldn't be more happy or more scared. I've talked about that love/hate relationship with dialysis...but it's our normal. I'm used to it. My family is used to the routine, and with routine we find comfort and normalcy...though it is a normal very few people understand. I've "talked up" the whole transplant process to my family...especially my mother that needs constant reminders that Matthew will be OK after. Yes, he will be OK. He is OK now actually, he just has ground beef looking kidneys. Basically I'm trading one set of problems for another.

These problems are both more and less scary. We've had many scary moments with Matthew thus far and I expect many more to come. Many lab visits with rises in electrolytes and creatinine. Many fevers that I will not know if they are the flu or rejection. Many blows to the stomach from roughhousing with his brother or falling down in the yard chasing after the dog, and I will automatically think he has just bruised his new organ. And then the day when everything comes full circle and they ask me again, "do you know anyone that wishes to donate for him?".

All will NEVER be normal for him, for us. It will be OUR normal. A transplant does not make the past year magically go away...along with all the scars (both physically and emotionally) we have endured as a family. It will never take away that I have been present for every one of Matthew's 14 surgeries...and you have no idea what that does to a mother's heart, unless you too have been through 14 surgeries with your child. It will never take away the fact that the only way I could get my son to gain weight was to put a permanant tube in him and stuff him full every night - never receiving a full night's rest in over year because of alarms and formula changes. We are chronically sleep deprived over here. It will never take away the look on my older son's face as I leave once again with suitcase in hand to yet another long stay over at the hospital. Him asking me why I'm leaving him and he wants to go, pleading me to cuddle in his bed until he goes to sleep that night. Looking through the baby aisle tinged with resentment, passing the 80 different combos of food for babies, only being able to use 6 due to his electrolyte levels.

No, transplant doesn't take all that away, its still there engrained in my memories and carved into my soul. As I have said before, it really has made me a better person - but look at the cost of my lessons. I wouldn't wish a "sick" child on even my worse enemy, though I really don't have any...

I am ever grateful to my support system of family, friends, doctors, nurses, online groups and "virtual" friends. You have been there for me through thick and thin. Crying and praising right along beside me with as both good and bad news had been received. And because of that, I will ask you to please forgive me over the next few months as we start this "new normal". I know I will be moody and cranky and tired and overwhelmed. You say I am strong, but I am no stronger than any of you...I just hide my feelings behind a smile and a laugh. I cry a lot at night when no one is around. I've been on pins and needles since February 18th 2008 with no reprieve and I'm starting to feel the effects getting to me finally. Keep Matthew in your prayers and pray that I am a suitable donor for him. Though even that comes with a bit of selfish reasons...for once I don't want to be the one there for surgery.

I know that sounds AWFUL! And I feel unmotherly even thinking it...just waiting for the proverbial lightening bolt to come get me. ;) I'm tired of being alone in the night holding a hungry, fussy baby that is NPO. I'm tired of being alone in the night after surgery when he is too uncomfortable or too hopped up on meds to sleep, so therefore going through two nights in a row without my head touching a pillow. I'm tired of once Matthew finally gets some rest, the resident or nurse decides now is the time to check him out. I'm sick of parent trays! I want to take away his pain, and if I'm lying in my own bed across the street at Emory...I am in essence doing that. I'm taking away his bad kidney and giving him a good one, one that will hopefully last many many years to come. I will be going through my own pain and discomfort as my body goes through a brief period of toxicity while my remaining kidney tries to compensate for the one that has been donated. I will better understand him as a mother should. I know the fact of not seeing him, holding him as he cries after he is extubated will be torture...but I just don't know if I have it in me to be there again. I will, of course if I'm not cleared...but I really pray God has mercy on me, and let's me be blissfully unaware on the operating table. Just as my baby will be...for the 15th time.

A mom is picked.

This was sent to me in an email. I wanted to share with all the other moms out there that have been "picked". Especially a certain mommy in Atlanta whose precious boys need our special prayers. This one is for baby E's mommy. :)

God Chooses Mom for Special Child

written by Erma Bombeck, published in the Today newspaper



Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year, nearly 100,000 women will become mothers of special needs children.

Did you ever wonder how mothers of special needs children are chosen? Somehow I visualize God hovering over Earth selecting his instrument for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

"Armstrong, Beth; son; patron saint Matthew."

"Forrest, Marjories; daughter; patron saint Cecilia."

"Rudledge, Carries; twins; patron saint.. give her Gerard. He's used to profanity."

Finally, he passes a name to an angel and smiles, "Give her a special needs child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," God smiles. "Could I give this child a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self pity and despair. Once the shock and resentment wears off, she'll handle it like she does everything else thrown at her."

"I watched her today. She has that feeling of pride and independence. She'll have to teach the child to live in a world she doesn't control and that's not going to be easy."

"But, Lord, I dont think she her faith in you is very strong."

God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps. "Selfishness? Is that a virtue?"

God nods. "If she can't seperate herself from the child occasionally, she'll never survive. Yes, there is the woman I will bless with a child that seems less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says "Momma" for the first time, she will be present at a miracle and know it."

I will permit her to see clearly the things I see- ignorance, cruelty, prejudice- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, his pen poised in mid air.

God smiles.

"A mirror will suffice."

God, I am eternally grateful you picked me to be Matthew's mom. I can't believe how lucky I am. And to be doubly blessed with his older brother too...wow! I am humbled and I am ready for the next challenge as you see fit.

Time

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

these two guys...

OK, so one calls me mom and the other just burps in my face...but I'm completely taken by him. Isn't mommy love AWESOME?!?

One for the momma's out there!

Oh, we've all had one of THOSE days haven't we? When your child is up all night with a stuffy nose, TOO tired to nap (I still don't get that!), just all sorts of whiney and cranky, hubby comes home late from work and the pet of your choice just threw up on the couch or carpet...whichever stains easier! Luckily those days only come around twice a year around here, but they seem to last an eternity! I know I'm pushing my luck with this, but we haven't had any bad days yet this year...at least not with the one that is already out. I think God knows we have our hands full with the one that is still baking and has decided to cut us some slack. :)

But I've been thinking...all mother's go through days like this. Our mothers did, their mothers did...all the way back to the Bible even. And one mother's mountain is another's molehill and vice versa. Different things set each other off. Some women are anxiously charting temps and counting days in hopes that THIS time they will get that big fat positive line they have been hoping for. Others are dealing with tough choices when a big fat positive comes up unexpectedly. But all of us are dealing with something out there. All of us have our own trials to face.

Imagine the heartbreak Jochebed (not sure if I'm spelling that right) felt when she was told that Pharoah ordered all newborn sons to be thrown into the Nile. But her trust in God saved her little son, Moses, and he was able to carry out his purpose and free God's people. Sarah had to endure the tragedy of infertility (no clomid back then guys). But through her constant faith in the Lord, she was rewarded with Issac. Her trial showed her nothing was impossible if you kept your faith. And just try to imagine the great responsibility Mary felt when she gave birth to the salvation of men. The daily fear and worry she must have endured knowing what He had to do in His life.

Most moms feel they don't do enough for their children and yes, we can always do more...but dont' overlook what you do do for them. God doesn't. He sees it all and rewards you for it. Everytime you cut the crust off that PB&J sandwhich or take them to the dentist (kicking and screaming) it means more than you or your children realize. You don't have to be SuperMom, with the boots and cape. You just need an extra Kleenex and a juice box in hand, and a heart full of gratitude to God.