A few Words

Today was a long rough day.  We first woke at 5AM to Ryan screaming from pain while urinating. Then we headed to my mom’s to drop off Rowan and then off to the hospital. The clinic wanted a urine sample to test for UTI and to see if there was any blood to indicate a kidney stone. He had no problem peeing in the cup – pain free, it figures. Then we headed to radiology where after 2hrs of waiting he was sedated then scanned – all that for 15 minutes. He took his time waking up too but by noon we were headed to see the sites in the hospital and begin our 3hr wait until his next appt.

Ryan went into melt down mode after about a half hour and I was dehydrated, starving, and so ready to go. We attempted to leave, actually making it to the car, seat belts on. But we were both super grumpy and just needed to stop for a moment. I figured we should just stay, eat, and wait it out instead of going to mom’s, risking him falling asleep in the car, possibly eating, possibly napping, then heading back to do all over again in a few hours when we were both so cranky. I stepped out of the car to breathe as Ryan flailed inside. Tantrum done, then we hugged and made-up and headed back inside to eat.

Lunch was quite pleasant. Ryan had pepperoni pizza and I bought a pineapple fruit cup to add his favorite topping to the slice. He also devoured a mandarin orange jello cup and a grape slushie. After refueling our bodies, we decided to go for a ride to the stars and bottom of the sea courtesy of the glass elevators in the lobby. It was almost exactly a year ago that he did this for the first time. One of his favorite nurses, Ryan, showed him this for the first time. He took him for a wheel chair ride out of his room and into the hospital. He had a trach then and was so very ill. If you look back through pictures you can see for yourself. He has come so far.

After zooming to the sea one last time, we rode the escalator and then stopped to watch the ever-fascinating ball machine. He dragged me into the gift shop where we spent plenty of time playing with every toy. I was coerced into buying him a fire truck which he is currently sleeping with.  We then went upstairs to the clinic to wait some more until our appt, only 40 minutes too soon. And it figures she would be running behind too. Wait some more. Finally the doc came in and gave us a word.

“Stable”, she said. “The scans this morning were stable.” I heard her but I also saw her. Her body language expressed something more. She seemed uncomfortable, not as enthusiastic as her words begged to be. She then said she was “uncomfortable with the terminology the radiologist used” in the report. She lost me there. What does THAT mean? She explained that there are two small areas on his lung that in past scans were referred to and considered to be post-operative changes. But on this latest report the radiologist - who she gushed is very good and very trustworthy - called these two tiny air filled pockets something else. Another word: “cysts”.

It’s just a word. Just one tiny word. Could mean nothing. Could mean… something. To a parent of a kid with PPB, and to a PPB doctor, that word has a lot of weight. PPB starts out as a tiny, seemingly harmless, cyst on a child’s lung. The cyst then grows and becomes filled with liquid and then advances to become a solid tumor. I could now understand why she looked so concerned.

She tried to reassure me that there have been “no changes” in these, suggesting post-operative sites, and that the scans have remained stable and the overall verdict is that he is disease-free. But she said she is going to confer with the radiologist and his surgeon to make sure and to better understand why this term was now used. What does it mean?

Cyst or not, they are going to keep an eye on it to determine if there is any growth or change, which may indicate return of the cancer. When and if that happens, they will decide how to proceed at that time. But as it is right now, there is no change. He is stable. His next set of scans is in three months putting us at the end of February, right around Rowan’s second birthday. So we will just have to wait, and pray, and see.

As far as the pee-pain… his test came back fine, no blood and no infection. So they have no idea what was causing that. If it happens again, I am to call the doc right away so we can look further into it. However, the radiologist said his testicles are always bouncing around up inside of him. I guess on several scans they can be seen. This is not unusual but they should be able to drop back down. She described them as yo-yos that can bounce up and down inside and then drop into position outside of the body. They are concerned because they should’ve dropped by his age and there is an increased risk for testicular cancer if they can’t drop. After a thorough exam, the doc said she could not find his left one to pull it down into place. He will need to see a pediatric urologist who can “tack it down” as she put it. I’m obviously not a guy, but it makes me feel squeamish as my imagination stumbles over just how they may accomplish this.

I am hanging onto hope, as always. There are a few words and what they all mean that will be running through my mind over the next 3 months. “Stable” is good. “Cysts” is undecided and panic inducing. And “tacking down a yo-yo” while seemingly comical is the next medical hurdle. Right now I just want to enjoy the holidays with my family. And stand in awe and thankfulness of the abundance we DO HAVE in our lives.  

Finally by 5, I got to mom’s to pick up Ro and a lovely pork pot-roast she had cooked for us. This exhausted mommy and the sleepy kids headed home arriving just minutes before Daddy who was coming home from work. And after quickly eating, I went straight to bed. I awoke to help put the kids to bed then decided to stay up a bit and write this update to all of you who’ve been so patiently awaiting a few words.

Thank you for sticking with us this past year. My heart and my gratitude are continually overshadowed and overwhelmed by friends’, family’s, and even strangers’ warm hugs of support and generosity. My sincerest THANKS! Happy Holidays to you and your family!

Little White Lies

Sometimes it’s good to lie to your kids.

I remember being pregnant with Ryan, my first, and saying how I did not want to perpetuate the lie of Christmas, namely Santa Claus. While it’s true I did not want my kid to become one of those punk little whiny eight-year-olds who think that the only reason for the month of December is to celebrate a big fat man in red, or a greedy and selfish kid who thinks that the holiday is somehow a second birthday party just for him. I was more worried about having a broken hearted kid that reflected my eleven year old self after discovering that Santa was not real. Yes, I was eleven and in the fifth grade when I discovered the truth. After a week of kids laughing at me and subjecting me to tales of how they caught their parents on Christmas Eve wrapping presents and placing them under the tree, I bravely asked my mother to set me straight. I think she was shocked that I still believed. And try as she may to keep up the rouse, I could see the truth in her eyes and I was devastated. I probably said something like, “Well, I suppose the Easter Bunny and Tooth Fairy aren’t real either, huh?” I wept as the bricks and mortar of childhood imagination crumbled into a pile of dust. The dreams and fancies of fantasy and legend vanished into thin air. The twinkle in my eye dimmed to a dull shine. My very innocence died a cruel death that day. I decided I did not want to subject my children to such deception. So for a while I was quite pleased my son had no interest in such things.

But sometimes it’s good to lie to your kids. Sometimes the wonder in their eyes and the excitement they exude make it all worthwhile. My son is 4 this year and so far I have noticed that four year olds have a good memory, can aptly pay attention (when they want to), and take delight in the fantasy and whimsy of fairy tales, as if you can see the gears of imagination working in that tiny noggin. He was not always like this you see. For the past several years the holiday has come and gone with just a mention, just a passing gesture, and without a detailed explanation to the man in red. Not that any in length description would have made a lasting impression anyhow on a kid whose attention wavered at the slightest sound, a kid who changed his favorite color every day, and who could care less about nonsense traditional fairy tales. He has always been a very matter-of-fact kind of kid. He takes delight in numbers and letters and the way things work. His favorite things are alarms and sirens, smoke detectors, and medical devices that make noise. He seemed to prefer the truth and detailed explanations on how things work. Fairy tales and stories were met with looks of doubt and questions of feasibility. You can’t pull the wool over his eyes. He didn’t care much for TV or movies and in fact did not sit through an entire movie undistracted until he was nearly three years old. Then I was subjected to the same movie playing in a loop nonstop for a week straight, hearing him reciting it word for word, until I found myself humming along to the soundtrack in the middle of the day. 

But I digress; I never saw the sense in taking the time or energy to explain the whole story to him when he had no interest to begin with. For him Christmas encompassed the tangible: snow, decorations, a tree, lots of food, and family, and of course presents. That was fine with me. But this year, he is four and he asks a great many of questions on things that are difficult to explain. After a year of dealing with some of those hard-to-explain things in his life, he has discovered that there are some amazing things in the intangible: the giant tumor that could not be seen and that made him very ill, the skill of the doctors and mysterious multi-colored medicines that made him feel better, and the belief in God and prayer that worked miracles on his very life.

So last night, I took a step in the direction I said I would never venture. I decided in a split second that it was unfair of me to rob him of the enchantment and wonder of the belief in mythological beings that have become the cornerstone of any American childhood. I want him to be just a regular kid and experience all the things ordinary kids do. I guess that this is one thing that has changed for our family since he was diagnosed. I've learned to loosen up. So here we were in the middle of the night, way past his bed time, wide awake and having a conversation about winter. And it honestly didn’t occur to me until we were in the middle of a conversation, that he did not know much about the season. I first hesitantly asked him if he knew the story of Santa Claus. His answer was, of course, a confused no. Immediately his delight and anticipation grew as if I was about to present him with a grand gift. And so began my lie.  

He giggled with glee. His eyes twinkled with delight. He listened intently and with such eagerness as if every word of my story was an ever growing crescendo to a magnificent climax. I told him of the village hidden away at the North Pole, the magical elves who cobble away all year long making special toys, the fanciful flying reindeer, the giant red sled and the sack filled with gifts. I described in great detail the velvety red suit, the snowy white beard, the bowl full of jelly belly. I tried not to leave out any element of the fairy tale that I had once treasured so fondly as a child. And when the story was over he asked me to tell it again and again. Each time I told it was as good as the first. It was as if the story was a treasured secret, a pirate’s chest, and he had just discovered the key to unlock it’s riches. And I found myself feeling like a kid again as I recalled the feelings of enchantment. For a moment I had felt that overwhelming swell of mystery and exhilaration that I once felt so long ago. I had recaptured my lost innocence. 

Finally I broke the spell, insisting we had to go to sleep. It was getting very late and here we were giggling and whispering in bed together in the dark of the night. There was something charming about that; being there in that moment in time cuddled under the covers on a chilly night, with my precious son, enveloped in sheer happiness, knowing an intangible, mystical world may exist. As I tucked him in with visions of flying reindeer, magical elves, and whatever else his imagination dared to dream, I realized why the stories have been passed down for so long. I snuggled up next to him and as he drifted off to sleep I began to cry for my rediscovered spirit of youth.

Grains of Sand

I live in a small quiet neighborhood, where everyone knows each other, people are friendly, helping with yard work, sharing their garden's harvest, lending tools, and always ready to share a drink and some gossip. The appearance of emergency vehicles on our street gets everyone's attention, even when they just cut through to another street. And the time a tree fell on someone's car one street over and the power was out for a few hours, everyone came out of their houses to nose around, see what was happening, and chat with each other. So having an ambulance and police car stop at our house, the house where the kid with cancer lives, I am sure that caused quite a stir in the neighborhood and many to worry.
But it was not Ryan who was rushed away. It was me.
I had a rough day on Tuesday.
I woke up with a massive headache that just got worse as the day went on.
I decided to not take any of my pain pills or muscle relaxers since I had a Dr appointment with the nurse practitioner to follow up on my back issue.
For those that don't know, I went to the ER at 4AM Friday morning because I woke up with an awful pain in my lower back. I felt like I couldn't move. It took awhile to get out of bed and when I did I felt the pain shoot into my hip joints and down my legs. I have never had pain like that and certainly never had back pain that woke me up before. I decided to go to the ER. I drove myself. And in less than an hour I was out of the ER with prescriptions of pain meds, muscle relaxers and anti-nausea pills. They did no tests other than a urine test. I told them of my history of kidney stones and they ruled that out because of the location of the pain. I too, was convinced this was not kidney related because of how the pain shot down my legs.
So after a weekend of being a drugged up zombie, I decided to back off the pain pills on Monday so that I was halfway human to care for the kids. I was still really sleepy but managed to keep the kids alive until Robert got home from work and could take over for me. That day I noticed a dull ache in my back. The kind of ache that in the past typically precludes a kidney stone.
Back to Tuesday... at the doctor's office I told the nurse my story and she was appalled that the ER did not do any tests on me knowing that I had a history of kidney stones. So she wanted me to get a CT scan of my pelvis and abdomen to check for kidney stones. She also heard some rattling in my lungs and wanted me to get a chest xray as well since I was sick with strep two weeks ago. And she wanted to get a blood workup as well.
While discussing these things I mentioned about how I had experienced some chest pains about a week and a half ago. It was a Sunday evening, the kids were in bed, and I was sorting coupons on the floor. I felt a tightness and squeezing in the middle of my chest and a tingling numbness that radiated down my left arm. I was surprised and a little afraid. It came and went in waves and lasted about a half hour. I was fine afterwards so I figured it was nothing. She was concerned and did an EKG in the office which turned out fine. Maybe it was just a fluke, maybe heartburn, maybe a panic attack. But I wasn't panicked about anything. I didn't feel particularly stressed or anxious. She said the next time that happens to call her right away.
So I left the office after getting my blood drawn, with an ever increasing headache. I figured if I could just get home, I can take my pain pills and I'll be alright. I picked up the kids from a friend's house and headed home. I fed them lunch and put Ro down for a nap. Ry watched a video and played quietly. By this time the headache had gotten even worse and I felt very nauseous. I thought I should eat something because maybe that's the reason why my head hurts so bad. I ate a banana and some tortilla chips but the nausea stopped me from eating anything more. The pain was so bad and I was feeling extremely exhausted, like I could go to sleep at any second. I didn't take my pain pills because I was afraid of of them knocking me out when I had the kids to take care of and I was already so tired. I sat down and tried to close my eyes for just a moment and meditate away the pain. I called several people trying to find someone to come and sit with the kids while I just take a pain pill and nap for a bit.  But no one was home or available. Then I started to feel very strange. The pain had increased along with some new symptoms.
Difficulty breathing, dizziness, nauseous, tightness in chest, and tingling and numbness in both my arms and hands... it freaked me out. I thought I was having a heart attack.
I called Robert and told him that I wasn't feeling well and that I think I'd better go to the ER and can he please come home. He said he was on his way.
Then my phone rang and it was the scheduling department at the hospital wanting to schedule my CT scan and xray. I told the lady I wasn't feeling well. I told her I may be coming to the ER. I told her I didn't well at all and that I was having a hard time breathing and felt like I was about to go to sleep. She replied, "So you don't want to schedule this right now?" I told her again I didn't feel well at all and she said, "OK, then I'll let you go." It didn't occur to me until much later how absurd that conversation was.
I crumpled to the floor and tried to stay awake and stay calm. I then called my dad to ask if he could come be with the kids. He said I had better call the paramedics right away if I was experiencing numbness in my hands and chest pain and difficulty breathing. He demanded, "Get off the phone with me and call 911."
So I did.
The operator said she'd send someone right away. I then asked Ryan to run next door and tell them Mommy needs help. He said, "But Mom, I don't have any shoes on." I told him that it was ok just this once and to hurry next door and knock on the door really loud. He gleefully ran outside and returned moments later. I asked if he did as I asked and he replied, "But Mom, there were spider webs on their door." Turns out it didn't matter anyway because they were not home and the paramedics arrived shortly after. I explained to Ryan that some doctors were coming to look at mommy and make her feel better and to not be afraid. I told him they would probably take mommy to the hospital. He loves the hospital so this did not sound bad to him at all. In fact, he was so excited to see the ambulance he was practically jumping up and down.
My eyes were closed most of the time because I was just so tired, I was fighting sleep and pain and fear. I could hear many voices asking me questions and taking my blood pressure and checking my oxygen levels. Someone went upstairs and got Rowan out of bed. Someone else entertained Ryan.
Others helped me to my feet and helped me walk (more or less carried me) outside to the bed and then wheeled me into the back of the ambulance. Robert arrived and took care of getting someone to watch the kids and headed to the hospital right after I left in the ambulance. They checked my blood sugar and it was at 80. They said they only treat if it is below 80. They then tried, and failed, to put an IV in my hand while en route to the hospital. It felt more like they were digging around in my hand with a wire. Too dehydrated I guess. But they got one in at the hospital without any problems.
At the hospital they gave me something for the nausea and morphine for the pain. Morphine does not knock me out. This is something Ryan and I have in common. If anything it seems to perk us up. They did a chest xray and ct scan of my abdomen. The doc came back with good news. He said that my vitals and lab work and xray all looked great, like a young healthy woman. And on the CT scan they found nothing but two very tiny, almost microscopic, stones in my left kidney. These two little stones, like grains of sand, were wreaking havoc on my body. The doc explained that the increasing pain caused me to have a panic attack which explains the chest pains and dizziness and such. The numbness in my extremities was caused from my hyperventilation and blowing off too much carbon dioxide. He had a fancy word for it but I can't remember what it was now.
They sent me home with another prescription for pain medicine. And I didn't even get to vote.
And now it is a waiting game. I am drinking plenty of water and taking my pain pills and I'm just waiting for them to pass. There is nothing they can do for me. There's nothing anyone can do. I just have to keep taking the pain pills to be able to somewhat function and not scream.
So Wednesday I decided to go to my mom's house in order to have some help with the kids while I am drugged up. I experienced the chest pains once more. I was not stressed or panicked, just sitting still and talking to my mom at the time.
So I called the doctor's office right away. The receptionist asked to take a message because the nurse practitioner was seeing patients at the moment. I told her, "I saw the nurse yesterday and I was taken to the ER later the same day by paramedics because of chest pain. The nurse had told me if it happens again to call her. So that is why I am calling right now. I am having the chest pains... right now." The receptionist replied, "Ok. I'll give her the message."  Click.
The pains came and went once again. No big deal. I took another pain pill and decided to take a nap. When I awoke, I had a message and three missed calls from the doctor's office. The voicemail had a panicked sounding receptionist who said "I gave her the message and she wants you to go to the ER right away. Please call me and tell me you got this message."
She obviously got chewed out for not instructing someone to go to the ER when they call saying they have chest pain. I called back and told the receptionist that while I got her message I did not go to the ER, and was not planning to go as the pains have come and gone. And besides yesterday the doc told me it was just a panic attack, nothing more. She implored me to please go to the ER if they happen again as it is better safe than sorry.
So now as I wait for those grains of sand to pass as painlessly as possible (yeah right) and try and figure out what I am so stressed and anxious about.
I have no reason to be stressed and anxious now, right? Now that everything is ok. Now that the worst is over. Now that we can all sit back and relax and breathe. If anything, you would've expected me to be breaking down and having panic attacks a year ago. Maybe the past year has finally caught up with me. Maybe I can no longer be strong. Maybe I am tired of being brave. Maybe I just want to break down and cry and scream and shout out at how unfair all of this has been for us. Maybe all of my strength and courage has finally been spent. And now all that's left of me is being washed away like grains of sand upon a shore.

ONE YEAR

I remember the day Ryan was born.
I remember how he struggled to take his first breath.
I remember hearing his voice for the first time.
A little over three years later, I watched him struggle to breathe once more.
I saw machines breathe for him.
I grieved the loss of his voice.
I watched him hang on to life.

Last year
I could not imagine a single tomorrow.
I was trapped in a moment,
an instant of fear, worry, and grief
that lasted an infinity.
Any hopes, dreams, worries or fears I once had
meant nothing from that moment on.
There was only one thing that mattered,
only one thing that infiltrated my every thought.
It didn't exist in the past 
and did not allow me to imagine a future,
not a single minute past the one I was living in at that moment in time.
But each moment passed,
each minute expired,
each hour gone,
and every day moved on.


A year has passed.
In a year I have seen life drain before my eyes 
And I have seen it restored
In a year I have witnessed a body deteriorate 
And I have seen it grow
In a year I have been lost
And I have been found
In a year I have experienced profound sadness
And have embraced joy
In a year I have forgotten all that I know
And I have learned so much
In a year I have worried
And I have renewed confidence
In a year I have lost hopes and dreams
And I have gained new direction
In a year I have wanted nothing more
And I have gotten everything
In a year I have watched my baby grow into a little boy.

Today I celebrate the life of my child.
I am overwhelmed with emotion.
Joy, Elation, Hope, Worry, Fear
A loss for words
Swallowed up by the emotion 
a knot in my throat
Tears flow freely
followed by joyous waves of laughter
that wash over my heart
I grieve for what our lives were
and celebrate the life that is now.


Today he keeps talking about when he turns five, 
just weeks after his fourth birthday.
He circled toys in an ad for Santa to bring him.
He told me he wants to go back to the beach.
He has hopes and dreams for a future.
And now, so do I.

Chicken Noodle Stew

Mmm, Mmm, Yum!

It's a perfect leftover, scrape together kind of meal. Great for today when it is chilly outside. I love this recipe because I can make it when I have small or large amounts of ingredients. I can add or subtract veggies depending on what I have at the ready. If I had Pillsbury biscuits this would've been potpie, minus the noodles of course. Depending on how much liquid I add, it can be stew or soup. Tonight it was stew, and this is what I put in it. 

INGREDIENTS

Olive Oil
Diced Celery
Diced Onion
Diced Garlic
Chopped Carrots
Diced Potatoes
Cooked Chicken (I picked the bones of a leftover roasted chicken, the kind you can get in the grocery store hot & ready for $5-$7)
Salt, Pepper, Garlic Powder, Italian Herb Blend

Water or Chicken Stock or Broth
Egg Noodles
Cannellini Beans (I added these to kick up the protein and fiber - you could easily substitute green beans)
Corn (I cut kernels off of an already cooked, Szalay's corn on the cob we had leftover from our Labor Day cookout)
Peas (I used frozen ones)

PREPARATION

In a large stock pot, add the oil to coat the bottom and put on med high heat.
Add the vegetables and chicken (except for the corn & peas & beans - they become mush if cooked too long)
Add seasoning & stir occasionally until hot and veggies softened
Add water (broth or stock) & bring to a boil
Add egg noodles, corn, peas, & beans and reduce heat to low
Once noodles are soft, remove from heat & serve

My kids LOVE this!

Confessions of Un-Confidence

I have been having a rough time lately with my role as "mom".

I sort-of broke down the other evening to Big Daddy R and came somewhat clean that I felt like a failure as a mother.  I say "sort-of" and "somewhat" because I only cried a little and only touched on the tip of the iceberg.  I was not ready to completely divulge my true feelings.

I confided to him that this should be easy.   I am smart but this boggles me.  Why is it I can't do it?  Why can't I handle two small children?  I should be doing better.

I feel so awkward every time someone tells me what a good mom I am to my two little Rs.  My neighbors continually gush about it and I have found myself avoiding them (which is difficult because they are like grandparents to my kids) just because I don't want to hear about how wonderful of a mom I am to them.

I feel like I have a dark dirty secret that no one but me and my poor children know about.  My poor kids that have to suffer with the truth everyday.  And my poor husband who can see that something is bothering me but doesn't understand because I refuse to burden him with the depth of my troubles.

But to the keen eye, an outside observer may see the unclean house, the half-naked kids, the piles of laundry, the overworked husband, the too-clean stove, and the empty bottles of wine and deduce that either these kids need to have protective custody from neglectful and addictive parents, or that this is a case of a mom who has no confidence in her skills.

When I'm low, I'm under the barrel.  No, I'm the muck that grows under the stuff that lives under the barrel.

But then there are days when I can breathe and just "let it be".  Instead of fighting against the current, I just float downstream and have faith that I won't hit a waterfall.  Or if I do happen upon one, that it won't be too scary, it may actually be thrilling, and that I will not drown.

It is all about faith I guess.  I have to blindly believe that it will all be ok.  And if I put my whole heart into that belief then my confidence grows.

I can see that my children are beautiful and healthy.  I can see that my kids kiss and hug and laugh and play together.  I can see that there is a creative ingenuity in their messes.  I can see that the fridge & cabinets are filled with healthy foods that they actually love to eat.   I can see that my three year old started to read, can do simple math, and can recite books word for word with such enthusiasm and drama it's no wonder he's my child!  I can see that even though my 18 month old utters few words, her mind is working and she understands completely.  I can see that there is more laughter than screaming.  And I can see that Ryan proclaims everyday, sometime several times a day, that "We are the best & happiest family in the world!"
And I would have to agree with him wholeheartedly!

Tomorrow I may be losing my mind once again, continually following their path of destruction, but today I will savor every moment of the results of my "mom" abilities.

disappearing me

I spent so much time working on "who I am", defining my existence, making a niche for myself in this world.  It was important to me.  It was a driving force behind all of my decisions.  I wanted to stand out, be unique, an individual, a rare example.  It turns out that none of it mattered.  I was selfish and didn't know it.  I know it now.

Not everything changed once I got pregnant.  That's when it started, but I was still over confident.  I thought I had it all figured out.  I could continue working full time.  We could live comfortably in this cute little house I bought.  We would be healthy and happy and want for nothing.

When I first held him in my arms I became a mama bear.  Nothing mattered except him.  For the first time ever, I was focused on someone other than myself.  The intensity of this feeling overwhelmed me.  The sight of him had me grinning uncontrollably.  I cried tears of joy at the very thought of him.  I forgot all about my needs, desires, and comfort and spent up every ounce of energy into giving myself completely to this tiny ball of life that I created.

Suddenly who I was, and who I used to be no longer mattered.  The only thing that matters is who I am now.  My children do not know or even care about who I was.  They only know me for who I am now.  I try to be the best mom I can be for them.  I try really hard and some days I feel like I failed them.  Other days I don't try at all and I feel successful.  I do it all for them.  I am focused on them instead of myself.  I let the old me waste away.  She's no longer important.  Her dreams have faded and instead have been replaced by the new hopes and dreams of what I want for my children.  I want them to be happy, healthy, and good.

When you have a critically ill child, this feeling intensifies a hundred-fold.  Nothing else matters but him.  It is hard to even think about simple things like eating, sleeping, & hygiene.  There are a zillion other things to worry about and stay focused on.  And time is precious.  Why waste time doing stupid, non essential things when you don't know how much time you really have.  It is frustrating.   

I define myself now by my children.  Who they are, is what I am.  I am nothing without them.  The thought of losing him... it would be like losing myself.  Who am I without him?  I would be nothing.  I am scared.