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.

Surprises!

OK, the McBroom and Faust family (cause we are including the grandparents) are in the works of a big surprise for our one year post transplant. Now we don't have our transplant date or anything useful really at the moment...still waiting!!!! But we know it will be (God willing if urology ok's it) late summer, early fall tenatively September is what we are guestimating based on my other sources that have dealt with the same hospital. So we are planning a Christmas surprise. Santa's gonna drop a bomb next year people! :)
As for other much smaller surprises, I am working on my mother's birthday presents. We had family photos taken about month ago and I have been working on those to get them ready. Ordering 8x10's, 5x7's and various wallets along with picture frames. Here's a sneak peak:







Of course I am not showing the pictures she will receive...just some of the ones that were taken. I'll post the absolute cutest pic of the brothers when she gets hers. It just makes me smile.
Happy week to all!

Uncluttering my mind

Sorry...nothing "inspirational" here today...just clean the closets of my brain. Everyone once in awhile I need to spring clean in here before it gets so bad I can't remember which house is my house on my street.
No, no news on the transplant front. I was told by my transplant mentor that it took two weeks to get back to her about matches...the more people...the longer it takes. We had three, bunch of crap!
This weekend is yet another "Ian" weekend. Ian, my hubby is turning a year older on Saturday. He's draining our checking account. Two weekends ago, both my husband and Matthew were baptized together...and got presents. Last weekend was father's day, so naturally Ian got presents. And now his birthday... WE are getting presents! In the way of a date of dinner and a movie as my parents watch the kids for us. :) It's your birthday...happy birthday...we're having dinner...where we get to actually taste our food...and not have to pick up hotwheels from under the table...woo hoo!
Speaking of birthdays...I'm getting THAT feeling. When William turned one - I was ready for another baby. Didn't start trying until about 10 months later...but I knew I wanted one. I'm getting that itch again. I knew I wanted three kids. Ian and I had talked about it. Even though I still want one...I really don't think I'm going to "plan" on one. Now if God sees fit to give me another child, we will happily take one, but we won't be trying!
Why not? Am I scared of another high risk pregnancy filled with needles and procedures...absolutely not. I actually had a very unnatural calm through it all. I have a high pain threshold and new things were not in my hands...so what was to be all upset about. I would do it again in heartbeat!! Labs, needles, surgery...HA - I laugh at you! The real reason is that I don't think it would be fair to another little one. I have to spend so much time on Matthew and keeping him healthy. I know many moms have had special needs children and then followed with siblings, but I just don't know if I could do that. I think mommy guilt would get the best of me being pulled in so many directions. Sigh...guess we'll eventually get another dog huh.
My life is full and I am happy with my two awesome boys. Besides...I don't want to push my luck on getting a girl. God has been so accomodating with giving my boys. I'm not a girly girl - never was. I love football games, beating my best time on the road and rude crude body function jokes. I can't do pink and princesses and DATING and WEDDINGS!! And in the words of Jerry Seinfielf...not that there is anything wrong with that...that's just not me. ;)
I know this post is kind of all over, so I am going to wrap up with a picture of Ian and kids since I haven't posted pics in awhile.
Happy weekend and happy birthday to my love! Date night- woo hoo!!

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.

The gifts

Tomorrow is my baby boys first birthday (even though...techinically he's still 10 months old). I have bought all the necessary birthday shindigs...balloons, centerpiece, cake, plates, napkins, presents, cupcake hat with ONE birthday candle - OK, not all of the things were necessary. :) But really, none of that matters. It's just to put pictures in the baby book so we can look back later in life and remember the day. None of what I have bought him compares to the gifts he has given me in return.
This one small little guy is responsible for making me get back on track with God. I had stopped going to church, we had stopped having family prayer, I had started taking things for granted...no more. He has made me question my "religion" and find a new faith through The Word. I now find myself trusting in God more than relying on monitors and lab results. My child has already defied the odds anyway...what do the statistics mean to us?
My son has given me many small things that add up to make me a better person. I'm more well rounded you could say. Before if I couldn't put myself in your shoes...I just figured you'd be able to make it out ok...everyone does right? But through Matthew, my compassion and empathy have strengthened. I no longer turn a blind eye to children in distress. I freely admit to not being much of a "baby person" as I grew up. I would much rather hold a puppy and a child. Never even thought I had the "mother gene" in me until I gave birth to my first son, William. But when Matthew came, I wanted to mother all children...sick and healthy. I now have a special place in my heart for all the babies and children that reside in childrens' hospitals around the world. I find myself stopping in hallways, in doorways and in the parking garage to say Hi, wave at or share a smile with a "sick" child all the time.
My son has gifted me with strength, a strength I never knew was humanly possible to achieve, but now I see it all the time in a mother's eyes on the transplant floor. I've always been a fighter...but now I see I never really had something so important to fight for before. I never held the option of life vs death on a sheet of paper that had my signature on it. I never knew how hard it would be to deny your child the one thing all mothers are supposed to be able to give freely...food. How do you comfort a newborn that is hungry but has to be NPO for surgery? How do you tell a two month old the pain will be better tomorrow after they just put a hole in his abdomen and had opened up and sewn his bladder to his abdominal wall because that is the only way your child can urinate? How do you hold down your child to do hourly blood draws to make sure his potassium is decreasing so he won't go into cardiac failure? You just do...and you don't even think about it. Mommy's are not allowed time outs for good behavior or for difficult roads. That's what makes us mommy.
My son has gifted me with passion. A passion to learn more about being a living donor and organ transplant. A fire to share our experience and get the word out about the gift of life and hope. As the saying goes: don't take your organs to heaven, heaven knows we need them here. I have a deep need to help other pregnant moms that are given a poor diagnosis. I will continue to fight for the unheard voices of the unborn baby. I have gone on many mommy war paths with doctors, nurses, insurance companies, pharmacies and even family members that just don't get what kind of ordeal we live in day in and day out. I've always been pretty outspoken to begin with...but now I'm a loud and proud mommy to a preemie miracle that is plugged in to a machine twice a week that keeps him alive while waiting (with very little patience) to gain and grow and receive a kidney.
My son has blessed me with appreciation. I appreciate the fact that he can be helped. Even though this will be a life long journey, with many transplants to come...for years in between...he will be allowed a "normal" life. I appreciate every little bite his mouth takes (which isn't much, maybe a spoonful a week of something) and it makes me less "harpy" on my older son with his eating habits. I value the alone time we get each week together. I get lots of alone time with my older son since Matthew still takes three naps a day...when you are not making red blood cells...you tire easily. But I get several hours of one on one time with Matthew during hemodialysis. Not an ideal place, but neither was the NICU. And I even said then how much I would miss the one on one time...God answers doesn't he! ;) I appreciate every pound, every inch, every milestone. No matter how far off the charts we are...no matter how long it takes...we are getting there! I appreciate everyone's prayers.
My son is a wonderful little ball of boy! His laughter is infectious, his smile endearing and his feet...well they are very flexible and chimp like. ;)So, on my little fighters first birthday tomorrow, I want to thank him for all of his gifts to me. In no way will I ever repay him, but I hope a healthy working kidney will be a small fraction I can make up. I really am blessed, and I love him with all of my kidney (and heart and soul too). Happy birthday fighting Matthew...here's to many, many more. :)

numbers

Has it only been a year?? (well, almost a year) Next Friday, my son Matthew will turn one year old! He will spend the first part of his 1st birthday driving 1.5 hrs down to Egleston Children's Hospital, one hour getting fed and medicated, 3 hours for dialysis and vital and another 1.5 hours traveling home. Not a fun birthday...but a great one nonetheless! This is the baby that I was told to abort numerous times at 16, 17 and 18weeks gestation. This was the baby that was given a 5% chance of making it to birth, a 12- 15% chance of making to his first birthday and only a 20% chance of enduring hemodialysis at such a small size. And I am 100% thrilled to tell them to their faces...they were wrong!
From mid February 08 to June 3rd 08 I had several "procedures" to keep him going: 4 fetal surgeries for shunt placement, 11 bladder/abdominal taps to relive his urine build up, 13 amnio-infusions for lung development, 2 rounds of steroid shots (those suckers smart!), 5 IV lines and several blood drawls/labs. I don't regret any of it. He's had much more than that in just his first month of life. Most people (the lucky ones) never have a surgery in their lifetime...Matthew has had 14 in one year. OK, 10 in one year...as I am counting the fetal surgeries in there too. And I have never been happier to report that we are moving closer to yet another surgery...transplant!!
I got the OK to move forward with evaluation last Friday, after I made a small stink to his nephrologist. He wanted to wait until Matthew was 9 kilos, he's at 8.5...he'll make 9 kilos in a matter of weeks people. But weeks add up. Ian is starting summer vacation TOMORROW!!! Now granted 18 days of this he'll be in Savannah for drill, but we finally get to spend some family time together making memories. :) We need his time off to do the onslaught of donor testing that is required to give my son a healthy kidney. And based on guesstimates...it seems we will be transplanting in August, his due date month. :)
I hate that he will have another surgery, more scars, a long hospital stay...but I LOVE that he will LIVE because of it. People often ask how could I endure sending my child up to the hospital and waving good bye as the wheel (well, they just carrying him in their arms - fighting over who actually carries him) him into the OR, without a tear in my eye? Because they are helping him...each surgery has helped him...whether the "outcome" has been what we wanted or not...he's been better off with the surgery.
To be a smiling, waving, babbling, drooling baby boy that has fought for his life since 16 weeks gestation...well 12 weeks since that is when they say urine starts to form in babies...I'm so proud he has defied the odds. The numbers don't lie. Matthew may be an "outlier" But the number one has never been as much of an accomplishment as it has for Matthew, my brave fighting Matthew.

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. :)

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.

Mother's day 09

This will be my 4th Mother's day I have celebrated. My first mother's day, my infant son (William) was only 3 months old, and I left him for the first time ever to go have dinner with my husband. I cried pulling away from our friends' house that were keeping him. I quickly got over it has I enjoyed a dinner at the Oceanic Restaurant located on the beautiful Atlantic Ocean in Wrightsvill Beach, NC. (if you are ever in the Wilmington area...check it out...LOVE IT!)





Actually, each mother's day I have gone out...except last year that is. But the day after, I did go a get a needle in my stomach...does that count as going out? This year, my husband asked me where I wanted to go. I told him nowhere. I just want to be with my boys, all three. Last year at this time, I didn't know if it would be the only time I would be having a mother's day of two precious LIVING boys. And now, I have been blessed to have two beautiful boys in my home to love on daily. Honestly, what more could I want for the day?

But my husband is not easily appeased with my "nothing" request. All males are bound and determined to wrap something up aren't they! So, I just asked for a new book to read. I did have a few other requests as well...but those were free. ;) (One...I will not type out loud - I'm not that kind of lady...well, I am...but I'm trying to be well-mannered). I did request a nap! I also requested a bubble bath (in which to enjoy my new book), and a rub down with lotion once I am out. I did ask for a day with NO medical intervention. I will not draw up medicines, administer medicines, clean dressings, tube feed any solids, set up the nightly pump for tube feedings and I get a free pass on diaper duty too. :) My request is to be a "normal" mom for one day. Because I see my son as a "normal" boy...that giggles and plays with his feet and prefers cotton candy over peas. The only thing that makes him look sick is all the crap I do to him daily! So...not doing it for one day. I'll pick it up again in 24 hours with clinical precision as usual. I just want a day to enjoy my kids...both of my kids. Where only we exist, no hospital stays, no dialysis, no life threatening kidney failure. That would be more of a gift to me than any fancy restaurant, showy jewlery or expensive clothing item that comes in a box.

To all the moms out there, please do not take your kid(s) health for granted. There are SO many mom's out there that are praying for that gift every day. Happy Mother's day to all the mommas out there! God bless you and your little blessings. :)