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!

9 lives and outfits

This time two years ago, I was finally breathing a sigh of relief. We had received a call at 6am saying we needed to come down to the NICU right away, Matthew had taken a turn. Just a couple days prior we had started getting the paper work ready to begin our PD training to go home, so this call kind of came out of left field. I quickly called Ian's parents to come get William (as they live 5 miles from us) and ran to the car.

Matthew, the week before he got sick.


Let me back up a bit. Matthew has more lives than a cat is supposed to...and technically - he'd already used them all up during the pregnancy itself! It was both awesome and terrifying to go in for fetal surgeries. To watch my little 12oz son be "put to sleep" and have a catheter placed through his stomach into his bladder. I couldn't stop watching the monitor, partly because I'm a science geek and LOVE stuff like that, but mainly because I'm a mom and I wanted to be with my son every step of the way. If the surgery caused him to bleed out, (which the last one he hemorrhaged from causing them to stop surgeries all together) I wanted to be there for him (as best as I could) singing, talking, stroking my belly until his little heart stopped blinking on the screen. I was both excited and nervous to see him every time I walked in the door. I had two ultrasounds (sometimes three) every week of my pregnancy from week 16 to week 31. I just didn't know if I'd see our baby happily wiggling (because that's all you can do with no fluid to move it) or our baby eternally sleeping. His birth itself: all the complications with the pregnancy, oversized bladder not leaving a lot of extra room for his lung/heart development, low to no amniotic fluid except for a couple of days each week when I'd get an infusion and let's just add on a prolapsed cord while we are at it ok! Let's just say his guardian angel is working overtime!
We made it to Scottish Rite and doctors were surrounding his isolette. He was limp, unresponsive and whiter than snow. He was back on oxygen and his heart rate was everywhere! At one point, he coded while I was holding him and the nurses had to physically restart his heart in my arms. I think I went into shock because I took it in very calmly. Peritonitis had gone septic. Being only at the gestational age of 36 weeks (or 4 weeks before he was supposed to be born) probably didn't help as he had no reserves to fight with.
Since then Matthew has been septic three times, all causing the same reactions but without physically restarting his heart luckily. Though they did bring up a code cart twice during hemo when he went into septic shock. Another time they were set to replace his hemodialysis catheter, but his potassium was just too high to operate. At that time the kayexlate (really gross thick, grainy and sickeningly sweet medicine that binds to potassium in your body) wasn't working on its own any more. He had had 4 dose in 24 hours and his potassium only increased. So we had no choice but to go ahead with the surgery. The surgeon told me to have family near, their was a higher chance that he wouldn't make it than him actually pulling through. That was the only time I cried in the OR holding area when they came and took him from my arms. I didn't know if the next time I held him if he would be warm or cool.

Here he is back in my arms that afternoon:


Since then he has fought off congestive heart failure, outrageous blood pressures that are high enough to send a grown man into a stroke, line infections, meningitis and encephalitis. All in a days work for him. The nurses often remark how calm I am about this, how they never see me break down. I don't let myself break down until that situation is over. When it is over, we get discharged and I run straight for the shower. I turn the water to scalding, my skin is swollen, red and tender...and I cry. I allow myself five minutes to get it out and over with. I don't have time to dwell. If things still need to be said, I talk to my husband or a friend. I write a blog or a journal I keep bedside. It used to help when I would lots of nightmares during the last couple months of hemodialysis when they said my son was fading. Yes, lots of nightmare...
But in the end, my dream has come true. My boy lives to fight another fight another day. I remain stoic to all things medical, he remains strong. It works for us.
I've met many people in the past two years, when my small little sheltered life of all babies are happy and healthy was opened to a much broader range. Filled with more love and more pain than I could have ever imagined. I've been witness to both miracles and tragedies and they both haunt me in varying degrees.
For every size of clothing Matthew has grown into, I've picked him out something to be buried in. Morbid? Perhaps...but I knew I wouldn't be able to cope if the time came. I have outfits from preemie size up to 24 months. Only twice did I actually pull them out thinking I really was going to use them in the next day or two. Matthew has grown into a new size - 2T. (no more baby clothes) :( And I have NOT picked out an outfit. I don't know why the sudden change in my behavior. Just a month ago we had a scare with his brain swelling up! I think I'm finally at peace with EVERYTHING! I'm finally accepting what God has given me, given my son to deal with and I'm OK with it. I will no longer prepare for the worst case scenario. I will handle things as they come, like all parents do.
Two days ago, our little family joined our extended family at Chick fil a for the first time in almost a year. I took Matthew onto the playground there. He isn't supposed to be around that many children, especially with his biopsy coming up (I purelled that kid until he was wet and reeked of alcohol!) He went down his first slide. He looked at me - "gen" he said with a smile. On the top of the slide he said "I luv slide" and then "weee-ed" his way down.
The only outfits I will pick out will be which ones he can get dirty as he plays and lives.

Escape

I am proudly announcing that I have seen the new Twilight movie 3 times in one week. :) Yes, I love it and yes I will be 31 in less than a month. It's not so much the movies, although they are entertaining and the effects are getting better with each movie (in my opinion), I'm in love with the books.
I never was a real reader when I was younger. I would read the necessary books required by the state of Georgia and the education system, but other than that...I wouldn't really read for pleasure. Until I was on bed rest with Matthew. Fortunately for me (and the rest of my family) bed rest only lasted three months (helps when someone arrives 2 months before they were supposed to also - really cuts down the couch time).
My mother had just started her membership into a neighborhood book club. After the news of Matthew's condition, I wanted to do something that kept me from thinking and dwelling on it. It's hard wondering if every minute of the day if your child is alive or has suffocated due to cord compression and lack of amniotic fluid. Needless to say, it ends up taking a toll on your spirit. I had to escape. My mother mentioned a book they had just finished reading in her club - The Other Boleyn Girl. What did I have to lose? I gave it a try.
I got sucked into the pages of drama, lust and death in light of the royal house. Seeing history unfold in a new light about an old story everyone knew. It helped me forget my problems for a moment. I needed that moment; it enabled me to breathe without the pain in my chest and smile without the tears coming to my eyes. I escaped my own drama of life and quickly turned to the other books in the series to keep the masquerade of normalcy up for others to see.
Then Matthew was born. My world turned upside down. Everything I knew about caring for a baby was thrown out the window. He was special with unique needs. How many mothers force upwards for 14 medicines into their two month old, decant formula because the minerals (even in kidney friendly formula) are too high, and create a clean/sterile environment to pulse dialysate into a 4 pound baby for 12 hrs? I don't see too many hands going up... I had to unlearn everything I had learned with William. This kept me busy.
Even though I was busy, the quiet moments would be hard. I still had my child to hold and to love, but mourned the "normal" things in life I wouldn't get to do with him. I had to grieve for the loss of feeding my son. One of the hardest days was when I was told my son was slowly starving himself to death. He was malnourished and due to that developing nutrition deficiencies that are only seen in 3rd world countries. I was told that with his case of rickets - they would have to go in and individually shave each bone so he would be able to walk. Many times I wondered if I had pushed too hard to keep him alive in utero to let him endure so much pain on the outside. It ate away at me.
My bad month was October 2008. Matthew had 6 procedures that luckily were grouped into only 4 surgeries that month. He was NPO 7 times for 12 hours for longer. At his heaviest - he weighed just shy of 10 pounds. He was 4 months old. NPO nights were the worst, I didn't sleep because he didn't sleep. How could he when his stomach was knotting up in hunger? William was 16 pounds at 4 months and lapping up cereals and stage one baby food. Thirty two ounces of formula were NOT enough for him. Matthew would only get 3 oz of formula in before he tired out and went to sleep, waking up 2 hours later for another go. One night he was NPO for surgery the next morning that was put off due to his calcium levels. Twice he was NPO because his potassium was sky high and peritoneal dialysis wasn't working any longer. He was not allowed even the decanted formula because even a few mils of potassium could trigger cardiac arrest. He went 22 hrs that day without taking any food in - I still tear up thinking about his screams.
Yes, October was bad for me. Seeing my son's smooth baby skin transformed into landmines of holes as the surgeons played hopscotch with his PD catheter. And finally demanding that they allow me to feed my son in the only way that would guarantee him nutrition, via his g-tube. I would leave our small room once in the morning when our favorite nurse would come in while Matthew napped and scampered downstairs to eat a donut. I was back in 10 minutes and it only took that long because it was about an 8 minute hike going and coming from the cafeteria. My world existed in that small 6x9 room. My window overlooking the helicopter landing site. I hated hearing that helicopter - I hated what it meant. Some child and their family were going through things much worse than we were.
I stayed by Matthew's side, because I felt it was my job to monitor him, feed him, bathe him. Hold him when his IV blew out, bicycle his legs when the gas from the surgeries got to be too much, and calm him back to sleep after he had cried himself to a state of exhaustion. I needed to get out, but I couldn't leave him. So, I escaped once again.
My mother brought me the newest book they had read in her book club - Twilight. I was HOOKED immediately. Engrossed in the romance, fantasy and teen angst. I was swept into yet another world, this one full of possibilities that one can create in their own mind and world of make believe. I devoured all four books in the three weeks we spent at the hospital. Like I said, I didn't want to leave Matthew physically, but for my own health and heart I had to escape somehow. It through me back to my own teenage years when everything was possible and I was still in search of my white knight. (sparkling skin was optional) ;)
People wonder why I am so engrossed in this saga, why I see the movies over and over...read the books again and again. Because it helps me to escape reality. I think we all need that from time to time. Mommies of special needs kids - maybe a little more than most. It's not just Team Edward or Team Jacob (though I do have my preference!), it's about checking out for an hour so that I can be there for the other 23 hours of day and continue being strong. My kids need me, all kids need their parents. And all parents need their me time. These books helped me when my me time was non-existent, but highly necessary.
Ian is leaving...I don't know when...for the gulf coast soon. I will escape again when I am making my way through single parenthood. Finding time to schedule clinic visits, make therapy appointments and get William to preschool on time. Oh yes, I will escape and I will be a better mother for it.

Savannah

I'm back! Oh man was that needed!! I truly enjoyed myself - every minute. I left the house at the same time my mother left with my youngest. We pulled out onto the main road together, me turning towards interstate 75, her towards interstate 575...and I cried. I just didn't see how I would like being away from my boys and didn't understand why I had even agreed to do it.
Then I met up with my honey at the gas station. He ran over to my car and pumped my gas. Then he gave a kiss - a REAL GOOD kiss. ;) Yep - I'm alright now...let's go! We followed each other down, luckily missing the headache of Atlanta traffic. We were passing through Atlanta at 2:30pm on a Friday and only slowed down to about 30 for about 10 miles...which if you are familiar with Atlanta traffic, you know that is NOTHING. It took about 30 minutes to go to 10 miles instead of it taking 2 hrs like it can!
We get checked into our hotel (courtesy of the USCG - thank you!) and head out for a local hang out that my hubby frequents for lunch with the other guys. We walked the 8 blocks together holding hands and taking in the scenery. Not really caring that it was 95 degrees at 7pm. Just happy to be together and having an adult conversation. Afterwards, we took a leisurely walk around some of the squares and residential sections. My favorite being near the John the Baptist Cathedral (see pic).

The next day I slept in until 9am, took a 40 minute shower with NO interruptions and then met my handsome man in uniform for lunch! After walking back to the hotel, I just played on facebook, watched nonsense tv programs and curled up in bed with a magazine. It was HEAVEN!!! My honey came home around 4pm and off to a romantic sea-side dinner at Tybee Island. The food was OK, but the company was fantastic! Then we headed down to walk to Riverfront. Honestly, I found Savannah gorgeous...but their riverwalk was less than desirable. Maybe Wilmington spoiled me, but they really need to take some pointers from the old Coast Guard City to the north of them!
I didn't even take any pictures, because it honestly was nothing to take a picture of! Like I said Wilmington's is MUCH better! And man it made me and Ian both very nostalgic for the Cape Fear.
Ian and I have said we would do this once a year - a trip down to Savannah together. It helped rejuvenate us, rekindle the romance (and the spice). ;) I cried harder pulling away from the MSU where my husband was working than I did when I left home. It made me realize how much I really love him despite all the drama that gets in the way at home. He is my soul mate, the man I was made for, and the father I would give 10 more babies to - if I had a nanny. :)

Wordless Wednesday

Don't leave the baby powder where they can reach it!

Guilt trip?

So, my husband and I have the opportunity to go out of town for the weekend without our kids. When I say "go out of town", I mean I will accompany him on his reserve duty down in Savannah. No amusement parks, no villas, no spas. Just 2 evenings spent together as a couple without kids, because he will be working during the day. I'm getting a little flack for this. Not much and not enough to phase me in any shape, but enough to go - "really??".
The longest my husband and I have been away from our kids is 19 hrs. The farthest we've actually gone is one hour away. We've been "gone" twice. Once we left in the evening and returned before lunch for our 5 year wedding anniversary at our wedding night hotel. The other was a day in Chattanooga for my 30th birthday last year.
I honestly do NOT like being away from my kids. I'm kind of a control freak like that. :)Matthew has a very structured day and William is a homebody.
From October 09 til April 10, I didn't leave the house unless we went to the hospital. That was it. I couldn't risk getting sick and bringing it home to one of my kids. Couldn't risk missing transplant or "killing" the kidney with a simple cold virus that is NEVER simple in an immunosuppressed child. I have worried since February 18, 2008 when our lives changed forever. I can count on one hand how many times I have slept through the night since Matthew was born. And if I'm going to be honest - they were because I completely and totally drugged myself to sleep. The count is 4. Four nights in total of 733. Not because my kids aren't great sleepers - they really are! But because of the way my son eats...through a tube in his stomach. Milk products only last so long when exposed to room temperature you know. Gotta get up and change it out twice every night.
I put my kids first, before me, before my husband, before my house. Some don't agree with that and others do. I don't do that for anyone, but my kids and myself. I have my reasons. Whenever someone would tell me, make time for yourself or make time for you as a couple. I would honestly think - how selfish. If I go out it is after my kids have had dinner and are either getting ready for bed, or are already asleep. It just makes me feel like a bad mom to go out and "have fun" while they are awake and staying home. But now, I'm about to do just that.
And I don't feel guilty about it.
I might once I get ready to leave, or when I drop the boys off with their grandparents...but really - I need this. My husband and I both NEED this. Do you know how much strain comes onto a marriage when you have a sick child? When you spend weeks at a time at the hospital away from each other? When you have to find extra money to put aside to pay for medications when the state insurance program runs out? When dad has to choose between going to work to keep a job that pays the bills or going to the OR waiting room with me? Have you ever had to "catergorize" your son's surgeries into low grade and high grade to see if dad truly needs to be there in the event your son doesn't wake up? Have you gone to sleep with a pager in your hand? Do you have four different doctors, two nurses, two therapists and a transplant coordinator taped to your refrigerator, but know the numbers by heart?
I love my life, I love my sons, and I love my husband. I am doing this for all of us. I need to recharge my battery. Ian will be staying another week in Savannah when I get back. This is hard to do by yourself. All the meds, all the diapers, all the boluses, and the nighttime duties too. I've learned so much because of this wonderful and sometimes frightening journey. Now I'm learning to step back. To trust others and let it be known that it doesn't have to be on me 100% of the time. Matthew is at his healthiest he has ever been and I'm learning to trust that. I'm still used to the "old" days where he could spin out of control in a moment's notice due to his congestive heart failure, his 7.8 creatinine or his 160/110 blood pressure readings. But now his days consist of playtime and temper tantrums (could really do without those!) and things even seem (dare I say) normal! This is our chance before the surgeries start again. Upwards of 5 additional surgeries making a grand total of 25 in his little lifetime. Yes, I need a recharge, some down time.
I'm sending my supermom cape to the dry cleaners for the weekend. I'll pick it up and wear it with pride when I get back. It will be shiny and new and ready to face all the challenges and trials. It just needs a little TLC too.

Time flies

This 4D ultrasound was taken just two days before Matthew was born. It was taken about 9 weeks before I was really supposed to see him. Surprise!
Two years ago, Ian and I got up at 4:30 am and got ready to head out to Northside Hospital in Atlanta. We had a 6am appointment time, even though they don't open until 8am normally. (yeah, me and my MFM were tight like that) ;) He usually only worked at the Atlanta office on Monday's and Friday's, but it was a Tuesday and baby boy needed some fluid (even though I had just had some on the Friday before - he was a little fish). So Dr Gomez came down and opened up just for us.
I've described infusions before - they are not fun, but they are SO rewarding. I just LOVED seeing Matthew go from no fluid to LOTS of fluid. You could almost hear the chuckles and see the smiles of happiness on the ultrasound. How he would reach out his hand or kick with his feet to the needle where the fluid was pouring in from. You could see his little hands waving back and forth to make bubbles. You could watch the shunts he had pulled out at various times post-surgeries float up and around my uterus...sigh.
That morning Dr Gomez was playing his Rolling Stones cd. Matthew was enjoying it and "dancing" away. Whenever we need to do something close to him or the umbilical cord, we had to turn down the music so he would be still. :) And sure enough, about 5 seconds after the music stopped - so would he. It was like he got quiet to listen to see where it had gone. :)
For our early morning wake up call, Dr Gomez ordered us breakfast while I was on the monitor for 30 minutes. I was having contractions. I had them a lot the last week of the infusions. Of course I had three infusions in 7 days - so that might have had something to do with it too. ;) More meds to stop them, yummy breakfast, apologies to Dr Gomez as he called Northside satellite office in Alpharetta. It was already 8:15 and he obviously wasn't there... Infusion took a lot longer to do once Matthew as past the 28 week. He used up his fluid so much faster after having received his steriod shots. They said that was how it was supposed to be as he was practicing his breathing more frequently. He was bigger, there was less room to place the needle without causing damage to the cord, the baby or the placenta. So instead of it taking an hour, it would sometimes take upwards to two. Especially that last when I was having contractions that pushed the needle out - causing them to re-sterilize my tummy, get a new needle and find a new place to begin again.
Lisa, our favorite ultrasound tech, sprung me loose after receiving Viki's blessing that the contractions were slowing down. Down the hallway to a room I hadn't been in yet, I'd been in most! It was the FUN room. The 4D ultrasound room. Lisa spent half an hour giving us picture after picture of our little guy. He was gorgeous. Looked like a doll. I was SO excited to meet him. Little did I know it would only be 48 hours away.
But that's another story...
Thank you to the Maternal Fetal Medicine department at Northside Atlanta. Without your steady hands, your genuine concern and your willingness to put up with my bad jokes (and my laughing and shaking belly while you are trying to operate) Matthew's birth was filled with hope. The hope that pushed me to keep pushing for him.

Confession

So, some of my online friends that have not "met" me have asked to get to know me a little better. They are passing around a "confessions" post of sorts and I thought I would hop aboard. It will finally be a little light reading compared to my last...oh...20 posts. ;) So, here goes nothing!

You have things you tell others, like how much weight you would like to loose, but never how much you actually weigh. This is not the time to tell your weight! It is the time to tell your other fun secrets about your guilty pleasures. I'm sure there is one movie, one song or one book that you have not told others you are into. Spill it!

A list of my "guilty pleasures" and/or weird stuff about me. :)

OK - let's just get the biggee out of the way. I'm a Vampire Diaries junkie. I read the books back in 7th grade (totally gave my age away with that one) and was hooked. No, the tv series is nothing like the book, but I like it for what it is. And just in case you were wondering - I'm pro-Damon. :)

my favorite lunch to eat by myself - white bread with an American cheese slice on it...topped with bbq potato chips and sweet pickles. And yes, I only eat those when I'm NOT pregnant. ;) Hey - don't knock it til you tried it!

I read smutty romance novels when I'm stressed...which is a lot! I don't want to think through a book when life has filled by brain to capacity. My favorite writer is Kathleen Woodiwiss. She's not trashy, but still thorough. ;)

While the boys are napping, I watch baby birth stories. And sometimes I even cry at the actual birth. I don't know those people, but I know what they are feeling and it brings me back to the births of mine.

How I read the newspaper - grocery store ads, coupons, comics, sports and then the actual news stories. I feel I have to prepare myself for the doom and gloom of the world before reading about it.

I don't like cake. Never have, never will. I'll eat some to be nice, but I really can't stand it. I would prefer donuts for my birthday. Or a pile of reese peanut butter cups - yeah!

No one can talk to me if I am watching my football on tv. My daddy raised me right! At the age of 5, I was sitting at the games cheering my heart out for a 2 - 9 team. Now they are MUCH better...and I still cheer like that. Go Jackets!

I have been bitten by the texting bug and I hate myself for it. It is so impersonal and utter crap, yet I can't stop. It's fine at the hospital while Matthew is sleeping or to get a big message shared with several people. But to ask how your day is...just talk in the phone - not type in the phone.

I still have shirts from high school that I wear. I just refuse to pay $35 dollars for a piece of cotton with sleeves attached to it. I get clothes for my birthday and Christmas. Those are my new outfits for the year. Every once in while I shop the clearance rack. I'm a fan of shop-looking, not shop-buying. Don't get me on shoes - I loathe shopping for those!

Ok, so that's me. The real me. What about you?

Yeah - this is from our first summer in NC. NO string bikini's nowadays! ;)

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.