Mommyhood

"No one else will ever know the strength of my love for you; after all, you're the only one that knows the sound of my heart from the inside."

"Making the decision to have a child-it's momentous. It is to decide to forever have your heart go walking outside your body." authors unknown

Oh Grayson, I thought meeting your brother, Triston, for the first time kindled these quotes within me...you have tested them beyond my belief. You, your smile, your fight bring me endless happiness and heartache. But being your mommy is a job I would wait in line for...over and over again. I love you, Sushi. The past month (episodes of life and death) and the past few days (seeing all 3 of my boys ill simultaneously) has truly tested me. I am a mom busting at the seams. From runny noses to puke to diarrhea to fevers to irritability to lethargy. All 3 boys have broken my heart seeing them so miserable.

And the mind games-

3 different temp checks every hour or so

which one squirted their pants this time?

what did he nibble on and how much?

when was the last time he drank and how much?

monitoring breathing patterns

puke buckets

laundry-sheets, towels, clothes, thrown out underwear

do we call drs or wait?

hospital-worthy stay or not?

buy stock in gatorade and pedialyte?

Triston def has a stomach virus. Grayson's body is charging hard at fighting it off, sitting at the cusp for fevers with little diarrhea and small appetite. Caden started up today-miserable, slight fever, diarrhea and little appetite. Are Charito and I next? I would have much rather it hit us than them.

I just want to fix them. And when they are fixed it hurts to know that Grayson's "check engine light" episode was temporary, an all but permanent fix. I can't fix him. I am just following the "medical mommy manual" given to me by his medical staff and praying for an exemplary recovery, a perfect prognosis. The unknown houses more than enough anguish in my heart.

More ramblings

• Another funeral today, another ruff one. My dear principal of 30+ yrs, Dr. Catherine Wells, at my school was buried today. It was tearful but beautiful. Such well spoken words, of peace, encouragement and a life well-lived. Such devotion from one woman. Over 60 yrs in the CPS. Amazing dedication and service. As was said today, "Farnsworth will not be the same and yet she will always remain with us. It is her home." And as I sat in church I remembered that that, too was her home. She loved her church. The same church two of my boys were christened at, where I was married and where I will always remember her as well. I remember her attending my wedding. She was always so supportive of my family needs and professional decisions. I will miss her. This was my 4th death in 4 weeks and it does not seem to get easier. Getting hard to breathe, really.
• As difficult as these kind of events are, there are always amazing people around me to hold my hand, ride with me so I am not driving and crying alone, and hand me kleenux. I was filled and blessed with many of these moments today. Reminders of how lucky I am. I love you, my friends!
• A rough day was followed by a rough nite. Poor Triston was hit w the nasty stomach bug that has been going around. And they weren't kidding when they said it comes out of nowhere. All of sudden at 6 pm last nite he began throwing up and did not stop until 1 pm today (so far). He vomited every 40 minutes until today. He (and I ) got no sleep. Any time he got comfy enuf to fall asleep he was up again heading to the toilet. I spent the nite waiting for each bout, turning his body in the right direction to avoid changing the sheets each time, hoping he makes it to the toilet in time. My heart broke for him. And all the while I was trying to keep things quiet enuf to not wake Grayson n Caden. G had a fit bc I would not lie with him at bedtime. He was SO upset. He just couldnt get it. I needed him to stay in his room w Charito while T n I occupied my bed. It is so much easier to clean up puke from our bed than the boys (I feel like that should have been in the fine print when we bought those beds from Pottery Barn-the wood slats below, the fine grooves, the trundle ARE SO FRUSTATING TO CLEAN puke from!). I just covered our bed in tons of towels and peeled them away through the night as needed. Before I left for work this morning (dragging myself out of bed once he and I finally fell asleep at 6 am) I set him up on the living room floor with his sleeping bag, towels and a bucket. Easiest way for Charito to monitor him. Only meant G had to stay as far away as possible (good luck with that) and Caden didn't do any crawling around today. He was on lockdown to avoid T as much as possible. We have been lysoling like crazy and praying G dont get this. His ANC was great on Mondy so lets hope so. I dont care if it breezes through Charito and I -as long as it avoids the sick one and the baby, two of which would dehydrate in the shortest amounts of time. I can't handle that stress right now. It would SO be unfair to them!
• Gonna be another low key weekend at the Carpers. T is sleeping right now. Caden was down hours ago. I hope crazy man G gets the memo to sleep in late tomorrow. Of all the nights Caden was disturbed by the need to cuddle the teething woes away, last night he slept wonderfully, leaving me to concentrate solely on Triston. Grayson whined a bit but Charito took care of that through the night. That, too, was a plus that Caden had a restful night. His teething woes have mostly been taking place near breakfast time when he doesnt seem to know if he wants a liquidy or crunchy meal-all depending upon the needs of his teeth. On nights that he wakes it is just enough to cuddle a bit to fall back asleep and I knew there was no way I was gonna have enough hands to do that last nite while directing puke traffic. I believe the tops are trying to make their way through. Two bottoms are loud and clear! He looks too cute. I think he knows it, too.
• Nurse Jennie (Princess Jennie) had her baby! Yesterday she welcomed baby girl Maggie to the world. I told G and he said, "Oh, I see!" It was too funny. God bless them! She is currently experiencing that superwoman, mommy feeling-how wonderful for her. I am so happy for that new little family!
• We are still awaiting Jack or Charly's arrival...could be any day now.
• I am off to bed. More thought, I am sure, this weekend. Later!

More Maintenance Phase Ramblings and Updates

More venting-Lot on the mind, tons to fill in and even more I wish I could fix:

• The month of March has been a great one overall for all the kids. Big stuff happening round here. G with more energy I know what to do with. Dangerous kind of energy. He really has been a maniac. Jumping. climbing and causing more boy trouble than Triston. Any other situation I would not care-let him get his bumps, bruises, cuts and learn his lesson BUT it is not that easy with him. I wish I could wrap him up in bubble wrap-I swear! He wants to be a typical two yr old but gosh he worries me. It is such a mommy battle! Even his nurses said it is normal to feel this way and difficult to manage in his condition. They feel for me and understand. Here I am in a situation where I should feel more relaxed with my second to let him just be and I can't. It is unbelievably frustrating. Not to mention the typical 2 yr old sibling behaviors. He is constantly hitting T or throwing things at him to get his attention. It is beyond the cute phase. He is such an antagonist sometimes! Can u tell I am writing this while yelling at him to stop doing this and that? He is driving me nutso tonight! I cant even send him to his room like I would do bc he cant be left unsupervised.


• Just Friday afterschool G invented a new game in which he grabs the back of T's shirt and they run together. Yeah, if that ain't a disaster waiting to happen! And it did! But not as bad as it could have been -ONLY thanks to obviously good blood counts. The three of us were in the kitchen and I just knew it was what G was about to play as they were leaving the kitchen and heading into the dr. I warned G to not touch T. "Otay!", he yelled back at me , in his don't tell me what to do tone. I had just picked up the knife to carve the wonderful roast Alysa set up in my crockpot and BOOM! Down G went. I ran in to the lr and there he was on the floor in front of the couch blood pouring out of his mouth. It is always the same damn spot in his mouth that he cuts each time he falls and busts his lip! He has a crooked bottom tooth and it is THAT tooth that slits his bottom lip. It's as if that spot on his bottom lip never truly heals. I could see redness on the outside of his lip, too, wondering if his tooth had gone thru his lip! Ugh! I ran him to the sink. Got ice on it right away. There was so much blood I couldn't assess the damage. He fought me the whole time. Charito was at work. What would I do if his platelets were low, he kept bleeding and he had to get to the ER? I pulled the ice away and checked again. I decided to keep it off long enough to get him to stop crying and see how deep the cut was. I layed off the ice and got him to drink water to cleanse some of the blood away. It would not go away. I left it alone for a few min. Then I realized it wasnt continuous blood, it was clotted blood sitting in front of his bottom teeth. It was gel-like and firm. Perfect! I could not have asked for a better situation. This is what his blood is SUPPOSED to do without cancer! I was amazed actually. It had not happened any other time before since his diagnosis. And he busts this lip at least once a month! Once I left it alone I could see the marking on the inside and outside. If it had not been for good blood counts (which I would not have known otherwise bc we had not been to clinic in almost 2 weeks) and the way he landed in front of the couch when he fell (the couch caught his forehead and prevented him from landing flat faced) I really think that tooth would have gone thru his lip. And I couldn't even punish him (yell, take away toy, early bed) in the moment bc if he kept crying he would disrupt the clots. So, instead I had to explain to T that he was in trouble right now and G was getting in trouble later. Not fair at all! But thanks to good counts again, by later that evening the fatty lip tissue began forming and healing over the cut. That was the fastest his lip has begun to heal in 33 weeks! By bedtime G got his punishment. He did not get to bring any trains into my room "to put to sleep on my ny stahn" (night stand). He was only allowed to sleep with Shell Puppy. They both fell asleep within 20 min. Shortly after Caden woke. But that I did not mind because...


• last Friday was a big day for him! His second tooth cut. And that evening when his big bros were sleeping he crawled around this house til 10 pm. We let him have all the time he wanted. Charito got home from work by 9. Caden has been going to bed by 6 for months now but all of March he had been waking from 7-8 pm ish. I believe its his teething time and who could complain...at least it ain't in the mid of the nite. I give him a bottle fix and he is good to go down shortly after. I swore I saw him scooch forward while T and I were doing homework that day but convinced myself I was seeing things. But as soon as Charito put that Ipad down on the floor he was off! He has an army crawl like Grayson did . It is adorable to see. He even revs up in a circle formation before heading straight toward his objects of desire. Within 20 minutes of point A to B stuff he managed himself all over the dr and lr. So proud of our littlest. He will be 8 mos old on Saturday.


• We only have one picture of Caden framed in our home. I HAVE to change this. And I started to. Charito bought me a photo gallery kit for xmas but we just havent taken the time to get it all set up. Just yesterday Maria passed on a $20 credit to Shutterfly for me and I created a canvas art with the boys. That will make 2 pics of him hanging. It will increase soon!!
• Monday we went into clinic for counts. Great counts at that! ANC was over 3, 000. Havent seen that in a loooong time! Platelets looking great (hence the fast healing lip described above). Hgb was at 8.1 hovering at that cusp. But since he is not getting slammed with tons of chemo the next week it would most likely climb in a day or so. He is taking a chemo drug every night but is not scheduled for a big slam like Methotrexate intrathecally til April 4th.


• Even though March has been great for the kiddos it has continued to be a rough one for us adults. Papac gave us a scare the other night and we were very much concerned we were losing him. Very stressful. Then I finally had the chance to chat with Maria about Teresa's final days and it broke my heart to hear. I was so glad we had the chance to vent it out together but it sure does not make the pain any less. That same day (yesterday) I was told my principal/boss/friend lost her battle to cancer. I dread the aura of our school the upcoming days. We will all be hurting for sure. She may have lived 90+ years but a life lost is still a life and a life of cancer is so unnecessary.


• I stayed home from work today with a horrendous head cold. I went to bed last night w a pounding headache, blamed it on all the crying I did. But when it woke me several times in the night and all 3 kids woke with their own issues off and on I knew I was doomed today. But it was okay bc it gave Charito and I a chance to talk and just be. So much to sort through in our heads and the time we are given to do that these days is so limited. The gaps are so much tighter when you are dealing with more than one sick person in your life. When will the chaos and disorganization end?


• Overall Triston has been great. No issues at school. Thrilled to share EVERYTHING about his day from (literally) beginning to current moment. I really do love it. What I dont love is the emotional growth spurt he is going through. Once again, I can textbook rationalize what and why he is saying and doing what he does but I will always question to what extent cancer fits the equation. It hurts me. I dont think I ever wrote about it but months ago I had the first verbally hurt moment with him. He was upset about something and in his upset he told me "he wanted to break my heart...make me cry...have a heart that is broken and can't be fixed". Huh? Sorry bud, cancer already did that for ya! But it still hurt and it was a particularly emotional day for me to begin with and so I cried. I sent him to bed and I cried as I did the dishes. He is my first and there is something about that first child that you treasure forever. You don't favor them, just treasure that "first" everything feeling. And so hearing those first hurtful words that we all either muttered or whispered or yelled one day ourselves really hurt me. After it was all said and done I happened to check my email before bed and received an email from one of my parenting sites and it confirmed that this is when some of that talk can begin. It didn't matter if it CAN happen, I didnt want it to happen at all. Ouch! Then last week he told me he "wanted a new mommy" and he "wanted to live in a different house". Tonight he said " I hate when you send me to my room...I am just gonna punch you so you cant carry me to it". Nice, huh? Yeah, as much as I can shluff it off in the moment to deal with the situation as calmly as possible (and I will be honest it is not always calm) it still hurts. And I can hardly deal with it as calm as I would TRULY want to bc of Grayson. He gets so involved-yelling at T to _______(insert whatever I just asked T to do). Like he has no guilty involvement at all? yeah right! He is usually the cause. Or G has to cry right along (and in perfect tune and rhythm) to Ts shrieks. Or he follows us and gets right in the middle of it, causing me to be even more wary of his surroundings and trips and falls. And Caden? Well, he just gets dumped somewhere safe so I can get to the other two (whether he is upset or not). These heightened moments of a week get really old really fast. We are all stressed, going through the growth spurts we are supposed to go thru, and yet there is no break or free pass to make it any easier. And when one kid is upset the other either chimes in with his own pissations (its a word!) or that is the time the usually upset kid (Grayson, of course) is happy as a clam and I can't enjoy it to its fullest bc I have another fire to put out. ugh!



• Like tonight-while T continued to cry it out (which I have no problems with, we all need that once in awhile) Grayson was actually open to a bath. I did not have to fight him. And he was willing to take it on his own without the bribe of Triston time I usually have to use. He was a big boy in the big tub doing it all on his own. No screaming battles. Ever since his diagnosis and his port was revealed to him he has hated baths. So here I was with an emotionally frustrating evening, but I still got this moment. And I pushed it even further...I added Caden into the tub, too. G loved his companion. It was Caden's first big boy bath (the porker dont fit in the sink anymore) and he thought it was really something. It was so odd to look into the tub and only see the two littlest in there. I guess Caden is hitting milestones that will branch he and Grayson closer. I am looking forward to that. I even tolerate the disputes G has with him ever since Caden's mobility. G has a hard time accepting Caden's recent access to everything and is slow to allow him any train play. Poor rice! He has watched these boys play trains for mos now and what was the first thing he did once he was mobile and in reach of their trains? He put any train he could grab onto the tracks. He KNEW that was the where they were supposed to go.I loved seeing that mind of his go! G is just gonna have to learn to let up. It's called karma, dictator G!



• I am scared and worried. I worry everyday about how my motherinlaw will phase thru this all. When my fatherinlaw will leave the hospital (it has been over a month now). Typically deaths come in threes. I hate that saying but it has been oh so true in my life. My principal is the first of a new set. A new set? How ridiculous, but true. This was my fourth death in 4 weeks. I really dont want to hear about anymore. As my close circle of friends and family have discussed-we are tired of so much "heavy". We need a break from it all. And for us Carpers-each time I think we can recover and regroup we are hit with something else. It is just the way 2011 has played out. I know there are better times, easier times ahead for us. And maybe we need to get past the muck first but in the meantime I would like a bit of a breather, please.



• Right before Grayson's diagnosis he was really enjoying any kind of sushi. Triston loves it, too! Now G cannot have any raw fish. Whenever we order sushi it is quite the upheaval. But I finally (after months of torture) came up with a switcharoo. He noticed that miso soup always comes with sushi. I bought some tofu two weeks ago and made my own miso soup. And because he simply made the association that it arrives with sushi I was able to pass it off as sushi to him. He has loved his "new sushi". No more tantrums over real sushi bc he considers this HIS sushi. All fixed! One point for mommy.


• Today (Wednesday) Caden crawled to meet me at the door when I arrived home from work.Then he raised his arms up for me to grab him. It was precious. It is what I needed after an emotional day at work. I was right, walking into our school office was not easy today. So sad.


• Grayson's hair is really starting to come in again! We tease him and ask him how many sprouts he has when he wakes in the morning. His number varies. Today he told me six! yesterday it was 14! Too cute.


• I am taking full advantage of Grayson's good appetite in the past few weeks. I don't care how late I am up baking veggies bc they are getting all munched up by him! So I double duty it and cook for he and Caden. I bake up squash and sweet potatoes and anything else to take advantage of his willingness to consume almost anything. I just set aside bigger portions for T n G and then smaller smashed up/pureed portions for Caden. Makes me feel good! This week they are loving up the squash, sweet potatoes n avocadoes. I have no idea what is on next week's agenda! Keep you posted!

And thanks for reading!

Maintenance

We began the Maintenance phase a week and half ago. Here is how it has played out so far:

Once again, try and tell a 2 yr old he can't eat before a spinal tap/injection! Chips in hand, tantrum on the floor outside of clinic doorway. It was not until I told him he could pay the deskclerk for me and see Princess Jennie that he got his ass up and mosied on in. Then had to remind him that only "Dahter Twon" can say "yes, you can eat now!"

All of a sudden we have favorite requests for shirts when dressing in the morning. He calls this one his "Gold Rush shirt".

Steroid hunger kicked in! When he would ask for a particular food there were many times I had to tell me I did not have anymore. He came up with the idea that I "have to buy some". Then when I told him later bc we could not leave the house his response was, 'Tell daddy to buy some". He then asked for paper and colors to make a list. After he did some writing I was DIRECTED to record his dictation. See below...
It was adorable to see his wheels spinning. He was truly naming foods he typically has tastes for while on steroids. This was some serious list! He even attempted to help me spell them (like he overhears Triston do). Then when he ran out of food options he told me to just write letters down to "help daddy read".

We did some sleeping. Notice Shell Puppy. I threatened many times to take that thing away the past few days bc he just would not calm down or SHUT UP at bedtime. Too many times he woke Caden with his antics this week! Frustrating. I hate daylight savings!

I caught a pic of Caden's first pass out in the high chair! Yet, he still kept sucking away at that bottle.

We ate! Don't ask him to share either, not gonna happen!

Triston and I rearranged the living room. It is growing on me! I NEEDED a change!

The boys like the placement of the chaise! Cuddlebros.

And Triston got funky with his pajama choices. Old school tshirt, xmas boxers and ScoobyDoo grippy sox on a day it was 30+ degrees out. He is a character and a half! Even the pose was necessary in his book!

That is all we got so far...been a hectic, adult-crabby week. Lots of adult kinda stress going on. Tiring decisions, errands, hospital and dr visits for Mamac and PapaC and still trying to keep up with the everyday crap. Kids in great moods until the bewitching hours of 4-6 pm, except for Caden for which someone could poop on him and he would laugh at it-wierdo ( I hate it!!!). Grayson is eating me out of house and home, Triston is having great days at school with tons to share with us and Caden is attempting to crawl. We keep moving along...

Finality and Hope

March 12th
I wept today. Sobbed. Just hours ago. Just hours ago I said goodbye to my Italian Mama, Teresa.

I have not been to many funerals. My earliest and first was my great grandmother's, Adeline, when I was 9. I still remember the pain I felt in that room as a young kid. I remember my chest hurting while I watched all the hurt around me. I still remember some of the words I recited from the poem my parents wrote for her. I was proud to be given that responsibility. But it still hurt. That feeling stuck w me and from that point forward I dreaded all wakes and funerals. I do not do well. And since then if an acquaintenance passed away I simply sent a card to share my condolescences. It was just something I couldn't handle. I did not attend another funeral until over 20 years later. I know most people cannot say that. I know how lucky I was.

Nothing prepared me for the pain I would feel at the funerals of my filipino cousins Jimmy and Jacob in 2007. Their sudden and tragic deaths by drowning were unspeakable. Their anniversary is approaching and my family's pain deepens as the countdown hits, each year they trigger their pain at the marking of Jacob's March bday. Those novenas and buriels were absolutely heartwrenching. I had NEVER seen so much ache in one room, one grassy space afront coffins. No parent should have to bury their child before their own death. No one!

Teresa's service brought back so many of those aches and pains. I have a had a connection with this lovely lady since I was 8. Maria was my first friend in the new neighborhood. Her parents the first to welcome me into their home. Feed me AMAZING Italian food and wine. Their home was always filled with such a sense of togetherness. So comforting. So caring. I could go on and on with the memories but I wont. All I know is seeing those 3 children, now adults, and her husband was not easy. And yet as much as I dreaded seeing their pain , all I wanted to do all week leading up to this day was hold them, hug them.

When I arrived at the church I realized they would be walking in as a family with her body. Oh my. As soon as I saw them I lost it. Every one of their faces was purely empty. They were drained of life themselves. Numb. Their pain was everywhere. So what if Teresa was not hurting anymore! Everyone in that room was! How is this okay? How is this the way life is? Birth and death? I question it all. Her family has every right to be angry. I filled with so many fears of my own. The anger. Fears. More unknowns. The day I myself will be following my own parents caskets. I just can't.

It felt like a bad dream really. For years that family has suffered with one cancer diagnosis after another, amongst more than one of them. The type of family you want to yell at God FOR. I have prayed enough is enough already many times. Leave them alone! But no answers.

And here they were weeks ago coaching Charito and I through their chapters of lung cancer. And now it was over. So quickly. So unfair. When did it come to this? No trips to the zoo with Matteo. No opportunity to make his first communion outfit. No a lot of things. And those thoughts not only hurt to think of, the reality of it, but also my fear. My fear this would be our path with my own motherinlaw. Is cancer always this cruel to adults? Grandmothers? Even with hope, is this what happens to the elders? I only know the child like cruelties of cancer. I live it everyday. And we have had hope since the beginning and we face those cruelties with such force no one would want to challenge Charito and I. It is a fight they could not win. Us Carpers will win this one.

More cancer is what it was. And you bet I wept for my boy in that church. I told myself over and over again IT WILL NOT BE HIM. I WILL NOT PICK OUT A TINY PRETTY BOX TO PLACE MY BOY IN. NO. And that is what I said to my favorite girls and their brother and their father as I hugged them before the procession. Bc of course, with cancer on their brains, Grayson is who they asked about. It was the hug I wanted to give all week. And as much as I feared facing them, their painful eyes once I held onto them, I did not want to let go. We held each other so tight. I didn't care who was in line behind me to pay their condolescences. It was my friend, her sister, brother and father who I wanted to be there for. It was so hard. Their loss of faith so evident. And I don't blame them one bit. I am going through similar doubts myself. Not so sure they will get theirs back. They are a family that toiled with it for 10+yrs. Of course they are going to hate...alot. I would be the same.

But as we stood by Teresa's side in the mausoleum and said our final goodbyes I continued to pray. Pray their hurt will subside even just the tiniest in the upcoming weeks. I worry. I worry as soon as all of the out of towners head out...the quiet, the aloneness, the solace. It will hurt even more. It will become even more real. And it will feel like drowning. The what now questions will continue to trail them each morning. And even though I am not going through what they are going through somehow I played all this, piece by piece in my mind. I may not have loss my mother but I have shared a bit of their fears in the past few months. And that is scary. Too scary to see all this cancer amongst such a small group of people. So wrong.

My last goodbye to Teresa...was for Grayson. I KNOW (even though I did not visit her or call her often as I should of, guilt I will have the rest of my life) she cared, asked and prayed for Grayson often. A great woman with her loving heart would have done nothing less. The sickness they shared. The comparisons she most likely contemplated between her adult body and his tiny body...the somewhat similar treatments, procedures and regime. We were allowed to place a rose upon her casket. As I approached the bouquet my flabbered mess of a mushy body, mind and heart motioned me to grab the closest one to me, but in the middle of my reach my hand froze. My eyes widened, past the blurry tears and puffy lids, I saw a single remaining orange rose. Orange for leukemia. Orange for Grayson. I grabbed it. I held it tight. I kissed it as I waited my turn. I felt my tears fall upon it. And then I placed it on her. For her. For Grayson. A promise to her to no longer worry for him. He will be just fine, Teresa.

As I gave my last hugs, my last glances I held onto Charito tight. We walked toward the cars. I told him "That will not be Grayson." He said "I know." I said it louder. I repeated myself several times past tears. I told him I just had to say it aloud. I had to. God has to hear me. Hear my warning. YOU will not take him. Do you hear me? You will not.

Ramblings and Updates

A buffet of news:

• Week 30 (last week Feb 28-March 6) was a great week for G. Read the previous post to find out all about it.


• This week, week 31, continues to be another fabulous week for him. Appetite and happy moods are still flowing. No crabass attitudes to the extreme thanks to steroids...yet.So far his appetite is accepting of any healthy items. It has not yet morphed into steroid fights for all things sodium rich!
  
• Even though it's been a great two weeks for all the kiddos I cannot say the same for us adults. Charito and I have experienced 3 deaths in the past 3 weeks of people we cared deeply about. It has been a rather trying month, this sorrowful March , it has. Enough is enough already. One was my uncle whose services are still not order while we await an autopsy. Two of the deaths were our friends' parents (Joel's father and Maria's mother). And not just any friends. Friends of that close circle we call family. You know the kind I speak of, the ones by your side through thick and thin. Those people that are so close to you through every step of your relationship, marriage, children and are affectionately called aunt or uncle by your own kids. The kind of people you cannot picture your life without. And when they are hurting you hurt right alongside them. It has been a painful month to say the least.


• One of the scariest parts of one of the passings was that it signified the end of my "Italian Mama's " battle with lung cancer. No one should have to suffer and she did. And to be honest, her path rings all too close to how Mamac was diagnosed. The stories practically mirror themselves. All her death has done is bring up so many beautiful memories of my childhood ( this family has been part of my life since I was 8 yrs old) and other fears I currently fight each night before I go to bed. Not only do I live with cancer each day but I dread it in Mamac's life as well. It scares me to think that my Italian Mama's two yr battle may be what the future holds for another person I love. I am not trying to be negative, I dont think negative! But cancer will do what the hell it wants to do...again the loss of control no matter how hard medical staff plan their attacks. Yes, I believe an individual's heart, strength and umph carve the way but ultimately we are not control. Are we? I just cannot express my fears right now.


• So. to the best of our abilities we are trying to help out our dear friends. We are helping Joel out with his taxes this weekend (and I get to feed him like I used to, and watch my kids have a blast w Unca Doe). I was able to watch Maria's newborn, Matteo, for a bit (his grandma passed on his one month bday)...okay crying now....I also offered to contact her mother's school and inform them of the passing and service info. I had no problem doing whatever I could. And it so happened I was headed into her work to pass along info of Mamac's diagnosis. You see, both Mamac and my Italian Mama worked at the same school, the same grammar school I attended. I stopped by there yesterday and hit them with a double whammy of sad news. I ran into my former teachers and hugged and cried along with them. It was all too much. And tomorrow's sevice will be just as achey.


• Then to add to all-my father-in-law has been in the hospital for close to two weeks now. I will only share that he is having complications and that has us greatly concerned.


• I know, I know it sounds so black cloudish but it is simply what has been going on. No one could write this crap, it is so twisted!


• I hated every moment of attending work these past two weeks. When bad news hits and affects so many people in one sitting all I want to do is hug my kids so much more, so much tighter and not waste one minute doing anything else. As my mother said-our crew and I are just way too young to be dealing with so much yuck in the past couple of yrs. It is unheard of. But, work equals insurance...so I go. And I hate. And I put up with crap. And I worry. And I stress. And I try. And I put on a fake face. And I try and fix kids. And I try to soak up the smiles and that AHA moment some kids get every once in a while. Those moments make SOME of it worthwhile....but the paperwork and spec ed documentation can just kiss my flat butt. And I listen to people tell me I am a great teacher but I know deep down I am not at my best. That really bothers me. And then there are days I just don't care and I am a body taking up space, air and a swipe on the timeclock bc I am that much of a zombie in autopilot mode and nothing more. I only have so much in me sometimes. And it is not like my day ends there in that parking lot. I go home to my beautiful boys to play mommy, nurse, dictator (oh wait, that's Grayson's job...but sometimes he shares the crown) and wife. I don't ever regret those roles, I just wish the monotonous bubbled life routine could get shaken up a bit sometimes. But I know one day G will be allowed to step out of this rut and every one of us Carpers will unfold our wings and emerge beautiful butterflies, for a new kind of life. A slightly less stressful one?


• Bryley has been a pain in the butt in past weeks. She will be eight yrs old on July 3rd and for the first time in her 7+ yrs w us she is eating from the boys' table. Right off it when I turn my back! The only thing we can think of is that these are attention-getting behaviors. She is right under my feet most of the time, craving cuddle time and probably feeling neglected by Charito and I. She is still her wonderful, playful and gentle self with the boys but WOW food stealing is not allowed! She has been sent to her bed many times this week, a bed we have had sitting in the basement unoccupied for yrs and I HAD to bring it out-that is how MAD I was at her! RRRRRR!


• Triston has a cute routine going. One morning he said to me, " At school I will decide what my dessert will be tonight...whip cream or a computer game." Ummm, okay?! So that evening he came home to declare that he decided that evening would be whip cream and a computer game the following evening. And since then he has alternated those choices because " I am making a pattern, MOM!" , and when I forget about this ABA pattern of his and ask him what he wants for dessert he tells me to remember the pattern! He is a funny kid!


• We have a compassionate boy. On Tuesday T arrived home with some homework. In preparation for Lent/Ash Wednesday mass at school he was to come up w a Lenten promise and a monetary donation of his choice. I further explained (to the best of my religious ability) how Lent can be about choosing to be a better person and how to pursue that instead of giving up something. He thought about it for a minute. Then he told me he wanted to play nicely with his friends at school and not hurt anyone on the inside or outside. Okay-good answer. Homework done. So I thought. As I was about to get up from the table he still looked like he was pondering something. I asked him what he was thinking about. He then asked me, "Is Auntie Maria sad? Just like you are?" You see, 20 minutes prior to us settling down to knock out homework I had received the call of my Italian Mama's passing. I lost it on the phone, hungup and sobbed in the kitchen. T and G both heard me and came into the kitchen. Grayson immediately told me to "stop twying, it's otay. No more twying, mommy. No more", while Triston asked me what was wrong. I simply told him Auntie Maria's mommy died. How? She was very sick. I couldn't bear to mutter the words lung cancer to him bc right he associates that diagnosis solely to Lula. I could NOT paint any dreaded pictures in his head. Triston hugged me and told me it was going to be okay and that he loved me so much. So...when it came time to homework that was all obviously on his mind bc the next sentence out of his mouth was one of those mommy frozen moments that you treasure. He said, "I want to clean Auntie Maria's house. That's how WE CAN HELP her!" He clearly remembered the time when before Grayson's first return home from the hospital in August our friends gathered to clean our home for us. And even more recent (on Monday in fact) a friend of mine hired her cleaning lady to come over and take care of my floors, bathrooms and dusting all while G and I were at chemo. IT WAS WONDERFUL TO COME HOME TO THAT. TEARS STREAMED FROM MY FACE AS SOON AS I ENTERED THE DOOR, THAT SMELL OF NITTY GRITTY CLEAN, HANDS N KNEES ON THE FLOOR KINDA SCRUBBING WAS AMAZING! The kinda of cleaning we just cant get to on a regular basis! We keep the house maintained ENOUGH for G but struggle to get throught the days sometimes. So to Triston he wanted to help in Maria's time of need. He was understanding how people have to come to us in need and it floored me. That mommy moment reminded me-actually gave me a reality check-that in our chaos Charito and I are still able to do our job even when we think we are failing. We are raising a compassionate, kind and loving boy. Oh how I love him! So in the near future, when things calm down for Maria I intend to let T live out his promise. Somehow she and I will make arrangements for him to fold her clothes or dust or something bc her REALLY wants to help. That is the promise "help people clean thier house when they are really sad" that we wrote on his Lenten slip to turn in at mass on Wednesday. And he followed that promise by grabbing a handful of money out of his piggy bank to donate to church for those in need. He just kept coming down the stairs handful after handful-totally $4.30 in coins. I love you big boy!


• Triston is going thru some growth spurt. He is eating like crazy!


• I love that every once in a while I catch him reading his Valentine love notes, the ones I wrote for them each day in Feb leading to Vday. He kept them all, even G's, and stashed them in his empty candy canister shaped like a train. They sit on his shelf in his room. I think he is gonna be an emotional item stasher like me!


• Triston also received a package from SuperSibs this week. It is a trophy that is engraved-LOVE, STRENGTH, COURAGE. He is sooooooo proud of it. He really wants to show his teacher but I think we will take a pic and let him share that. What an amazing organization to devote such time and energy into the siblings of children with cancer. I know it makes him feel very special! They are even hosting a Quiet Heroes event in May that I am considering attending. It is for the quiet heroes of children with cancer-the mommies. I think I am ready to branch out and network with other moms fighting just like we do. We will see. Aerum has mentioned starting a Lutheran General Hospital table and I would def feel better if someone I knew was going, too.


• This morning I yelled/reminded T to leave his penis alone. A few minutes later G gnabs my attention to tell me, "I leave my penis alone!" Thank you, G. Thank you for leaving your penis alone!


• Grayson really never stops talking. Believe me-I am thrilled he is a talker and I have no concerns in that department but my gosh sometimes I want some quiet. And poor T. As soon as he opens his mouth to tell me anything G NEEDS the attention (all the time) and immediately interrupts. And G has even caught on that he needs to be LOUD about it in order to be heard over T. So instead I get a battle of the bands type of conversation instead of a calm one. So, I am often yelling at G to "STOP IT AND BE QUIET!" when what I really want to yell is SHUT UP but we dont say that in our home so there you have it. Well, now whenever G is annoyed that T is not listening to him or giving him all his attention no matter what the situation he just yells at to "stop it, be quiet". They could be disagreeing about a train, crackers or other brother stuff and the statement doesnt even make sense and yet he still does it. He has completely over-generalized the statement into any frustrating situation and yells at it. It is quite comical.


• Charito just brought me non-pareils from his mom-more emotional feeding therapy!


• Today is G's last dose of Prednisone (steroid) for a few weeks. His appetite has proven itself and the cheeks are starting to chunk up again. Love it.


• Even though we have had one too many deaths in recent weeks we also had some exciting births. Triston loves visiting Matteo (he calls him tomatoe) and is now excited to visit Auntie Katie's baby boy Samuel. We hope to see him soon. And of course we are still awaiting the arrival of baby Jack or Charlie. Neal and Amy are very anxious at this point!


• We are not scheduled for clinic this Monday. So unless Maria needs me or G has a sudden dip I will be going to work. I really just want spring break to be here already!
• Princess Jennie is officially on maternity leave. I will miss her greatly next Monday but am def sending her happy baby wishes for a safe, healthy delivery!
• That is all I have for now...

My fighter, doesn't disappoint!

This past week I often recalled Nurse Jennie's words...

"you will get pieces of G back!"

It was such an amazing week. Yeah, I know he was not on any chemo drugs (other than asthma, Bactrim and Nystatin) but we have had those kind of weeks before. But never w this much vibrant energy and glee. I just know Grandma's presence had a lot to do with it. But Charito and I found ourselves commenting on the same evening, a reflection of those words above. Were his behaviors this week a snapshot of what Grayson could have been like all these months had he not had to endure "the chapters of his new life"? Is this what things would have been like?

I know we will never know the truth. I believe the characteristics he possesses would have been there either way-stubborn, persistent infants don't just fluff that trait away. It is who they are and they take that with them. We knew that was our G 7+ mos ago. And I just know it is that trait, and so many more, that keep him plugging away at it all. So, I guess I am not questioning who my boy is, but maybe what life would have been like without cancer. Without a doubt it would have held less heartache, drama, fear and gut-wrenching pain. But that is not to say some of that may not have been sprinkled in? I mean, look at all the other sad events that fell at our feet that past few weeks/mos. All things that are out of my control. And being a mom always brings some of that into our lives doesn't it? To me it IS THE MOST emotionally-involved job out there. Wouldn't you agree?

But know that I will always bear in mind that with all the pain came gratitude, a reality check to toss the crap out of my life, tighter friendships, new friendships, new and beautiful people influencing and guiding us, and more compassion and hearts of gold we could have ever imagined.

Blessings is what they are.

And through it all our little Grayson pushed us forward, each and every morning. He needs us as much as we need him. That will forever be the case and I am perfectly happy with that contract. I made that promise to him the first time I laid eyes on him. A promise that will never pass. Here's to you, our lil fighter! Mommy and Daddy love you beyond words.

Feb 28th-March 6th

The last week of Delayed Intensification!!!!
We deservingly had this week off from clinic! And in true G style-he showed us there was NO NEED for visits with his energy levels!
My mom arrived at our home on Sunday and stayed the whole week to watch the boys. It was so stree-free! I loved it! Having that consistency all week was a treasure. The week still held its usual hecticness (wakes, funerals, Caden dr aptpmt, Awana, errands, attempts to clean, visits back and forth to the house and hospital to visit Charito's parents, oh and I finally made it to my drs office for a urinalysis that was supposed to take place back in January!) but at least it felt turned down a notch.
I cannot tell you how wonderful it was to have her here. We miss her so! G had a blast being a king. I embraced her opportunity to get to know the boys inside and out. The daily ups and downs of their lives. I felt like I could finally share what we go thru each day in person. God, I miss her! Believe, there are all too many days I cannot believe I accomplish what I do as a mother without her around. And on those tough days-I remember she and my father are the ones who gave me that strength.
And you should know that G had a FABULOUS, FANTASMIC, INCREDIBLE week!!
Not only was he spoiled with "Mama" (Grandma) love and actions all week but he was spoiling us with his actions. He ate wonderfully- I am talking steroid-like quantity with mommy loving quality! Yes, there were many handfuls of spicy nacho doritos but he soaked up and even requested tons of veggies and meats-
broccoli, green beans, carrots, lasagna, chicken nuggets, Mcdouble cheeseburgers (he is finishing off three quarters of one!), chicken, lots of yogurt, cheese, and cheezit crackers (alphabet only, I couldn't persuade him/trick him to eat the Spongebob ones) and pizza.
I was thrilled! His mood was even better!! A one of a kind clown, running everywhere and doing everything. We filled the week with lots of music and dancing-one of T and G's favs. Caden even got into the groove, swaying side to side ( I have a great video of this!) and perfecting his "tick, tock dance". Grandma couldn't have asked for a better week with her boys.
Caden stole her heart again...he was charming her at every angle. Grandma discovered his first tooth on Monday and practiced his sitting with him. He has mastered it-the past two weeks he has increased in duration and wallah! He just beams with pride when he is sitting! I really think it is the gravitation toward being at the boys' level and a better view of their antics. Caden is their best audience! So, at 7 mos I have a sitter and a toofer!! Crawling is right around the corner for this kiddo-you should see him squirm his way around the play mat.
We even had more than one visit with Ayden, sleepover style. T had no school on Friday nor tomorrow. All this cousin time is definitely welcomed.
T and Caden are off to another sleepover tonight while I take G to chemo tomorrow. We have a busy day of port drugs and spinal planned. I hope this week goes as smoothly. We will def let you know.
Overall, it was a week of well spent family time-much needed and unforgettable. Miss you already, Mom!