Happy 3rd Birthday, Aiden

My Dearest Aiden,

Happy 3rd Earth Birthday!

I remember when you entered the world. I was there, you know. I was supporting mom after a pretty long night. I think you were comfortable where you were, you didn’t want to come out! When you finally did, you gave us a little scare. That cord was pretty wrapped around your rather large neck and head. Once they got that off, though, you were a sight for these tired eyes.  Your head was a little funny looking; I won’t lie to you about that. I mean, you were a pretty big babe and your mom was a tiny a little thing. All that pushing made your head a shape I haven’t seen before!  But oh, everything about you was so you and so your mom and so perfect. We actually weren’t sure whether you would be born with a nose or with a partial nose. The sonograms that your mom had throughout her pregnancy (let’s bring that up in another blog) signaled not just a very large head but that there could be an issue with a nasal defect. We weren’t exactly sure what to expect but there you were, showing us your strength from the minute you were born and within a few minutes that Apgar score was right where Grandma wanted it. Plus, your nose was perfect. We knew we would love you and we already did, but how could I know it would grow that day and the days to come and be this love I am ultimately blessed to have experienced and known?

I know this is weird but yours was the first birth I’d ever seen. I didn’t see or watch or video your mom’s birth or your Auntie Heather’s or Unkie Ty’s. I have never in my life seen such a beautiful thing and then, to have my heart explode with actually seeing you (when I didn’t think I could love you anymore than I did while you were in mom’s womb) was a feeling I never had! And, you never got to hear this story but I held you first! I did!

Truly, you were a miracle of life and my first grandbaby and nothing could ever prepare me for the love and sense of protection that filled me.

Pa and I were so blessed to have you living with us full time. We were obsessed with you! We were there for all your milestones. There for your first words (I promise I forgive you for saying Pa before Grandma because it is a much easier word to say, lol), rolling over, eating food for the first time, sitting, trying to crawl. We loved seeing your face and your smile. I loved my Grandma cuddles and our reading time. I had all my special loves under one roof. How does anyone get that lucky?

I remember getting ready to celebrate your first birthday. Your mom ordered all your favorite things and planned a great big picnic. Mickey all the way! She was so excited, we just all wished you felt a little better-you were always so under the weather and sad. We were sure we would figure out whatever was going on though and fix it and then we could celebrate.

Figure it out, we did. Just…not the way we thought. You spent your first birthday under the hospital lights, in a hospital room, with a hospital gown and food. Saddled with the weight of the horrible truth that you had cancer.  Despite that and all our ‘unknowns’, we all wanted it to be as ‘normal’ as possible. We had balloons, family and friends, a singing resident doctor, presents, decorations, pizza, and a Mickey Mouse cake. Your mom felt like it was a terrible way to spend a birthday and it was but I remember telling her that this would only be your first birthday of many and you would just remember the fun, not the hospital. In our many years to come, we would celebrate it HUGE and celebrate your life and all your accomplishments!

But, you never made it to your second birthday. And now here we are, living through your third when you’re not here on this earth.

I don’t know how to explain how much I miss you. I don’t know how to tell you that I wish you were here and not there. I wish you were here even if it means you had to still be fighting the horrible cancer or the after effects of treatment. I wish you were here even if it wasn’t meant to be or in God’s ultimate plan or whatever rubbish is said to us to comfort us. Maybe something you don’t know but your Grandma can be pretty selfish, can’t she? Dammit though (forgive my swearing), you should be here. YOU should be HERE. I’m so mad at the world. I’m mad at the doctors although in my heart I know this isn’t their fault. I’m mad that we didn’t find the cancer sooner, that they didn’t recognize something they couldn’t have on that last day before sending you home, that they couldn’t revive your little heart no matter how hard they tried. I’m mad that they couldn’t SAVE you. I’m mad that treatments are poisonous and outdated and can kill even the tiniest of babies. I’m mad that nobody has found a cure. I’m mad that people walk around every day and carry on like this didn’t kill you and doesn’t make your tiny warrior friends suffer every day. I’m mad that kids are still dying. I’m mad at myself for letting you down. I’m mad that I let your mom down. I promised this wouldn’t happen, but it did.

Most of all though, I’m sad. Irreversible, never-ending, lost, physical pain sort of sad. I have never missed anyone like this. I have never experienced this sort of grief or this broken of a heart. I can wake up every morning, talk about trying to change things in the future, hope that this never happens to anyone again,  bring awareness to this through our loss and I swear,  I can visualize running to you and holding you again in Heaven. None of that brings you back and has us celebrating your 3rd birthday and all your accomplishments and milestones with you physically here with us. My memories sustain me but on days like this, they just aren’t enough.

Watch over us today. We’ll be watching for our signs from you. We’ll send you balloons. We’ll carry on. I’ll make the most of my days and my time with those I love. You should know though that I’ll forever miss you and love you from here to Heaven and back again and tomorrow, I’ll go back to trying to change the world in your honor and memory.

But today, I cry.

Love you my little man,

Grandma

 

Missed Moments

Of course I cried today. I woke up to memories and messages. You probably all expected I would cry today. It’s here. The anniversary or angelversary or day my heart broke in half or whatever you want to refer to it as. One year ago today, we heard the words “the mortality rate for this is high”, “he is not going to make it”, “it’s time”, “would you like us to get you his hand and foot prints?”.

I cry a little every day. I’m grieving. I understand that. However, I have not looked up whether I’m grieving ‘correctly’ or ‘according to plan’ or ‘following the steps’. All I can tell you is what I know and that is that this doesn’t hurt any less than it did that day. I may have been more numb that day.  I may have not realized the impact the loss would have on my life that day. I may have been on auto pilot helping make arrangements when my daughter couldn’t, an auto pilot that has since taken on a different form. I may have been unaccepting, unable to process, looking for answers on that day. But today, I am not grieving any less than those first hours, that first day. All I can tell you is that I’m not less sad, less angry, or less broken because a year has gone by. I don’t have less tears, less anxiety, less ‘what if’s’ running through my brain.

I have more missed moments.

Maybe that’s why it almost seems to hurt more today than a year ago? Is that “normal”? I don’t claim to know and frankly, I don’t care. Because, honestly, is losing a child or a grandchild ever normal?

In the past year, we missed Aiden’s second Christmas, his second birthday, his third Halloween, his third Thanksgiving. We missed him searching for Easter eggs and finding his little basket, giving him kisses on Valentine’s Day, hell, I miss giving him kisses EVERY day. This leads me to further wonder…

Would he still laugh and giggle when I kissed his entire face?

What would he be saying right now?

What would he think of his doctors? His nurses? Would he be able to say their names, have a favorite? Would he have friends on the hospital floor?

Would he still love balloons, airplanes, cars, the moon, little croaking frogs?

Would he want one of those crazy hatchimals for Christmas? As his grandma, of course I would find him one of those, no matter what lengths it took!

What would he think of the Christmas lights in the development? Would he still say ‘tinkle tinkle’ when he saw them?

What would his mom do with Elf on the Shelf today?

How would he greet his Pa when he came home from work, or his aunt when she came home for a visit to see him, or his uncle when he came home from school?

Would he like his mom’s new car?

Would he be in a toddler bed, waking up his mom in the morning to watch cartoons?

Would he still want grandma to make eggies in the morning?

Would he be walking?

Would Pa and I be taking him on our weekly kayak trips?

Would he play with the kids across the street? I bet he would love to play with his cousins on visits to New York.

Would he have a favorite holiday book to read?

How excited would he be that we still had that singing Santa and dancing dog?

What about swimming? Would he enjoy going into the pool? Would he be curious about all that water?

He said Grandma once before he left us. Would that be how he would call me? Would he say ‘Bye, Love you’ as he left the house, like he did just one short day before he passed?

I’ll always miss moments. I’ll never see him walk on his own, ride a bike, trick or treat, make his own Christmas ornaments, help me make Christmas cookies.

I’ll never see him have a ‘normal kid’ sickness where he eats chicken noodle soup until he feels better.

I’ll never watch him go to school, graduate kindergarten or high school, have his first love, get his driver’s license, watch his mom get married, play a sport, go to college, get married, give me my first great grandchild.

I’ll never see how tall he would be, how handsome he would be, what color hair would he end up having.

I’ll never experience any of that and this is why I grieve every day. In everything I do or every thought I have, I simply wonder ‘What would Aiden do’? What would Aiden think? Would he love this thing we’re doing or hate it?

I don’t know. I won’t know. I can’t know. Truth is, December 12 is a day to reflect on these things but I live every day like this. I miss him so very much and to be honest, I’m not sure how to do this. I have a feeling I’ll be wondering how for the rest of my life.

This is my new ‘normal’. This is my new life. The life I live as Aiden’s Grandma.

As a side note to all those that are wondering similar things about those you lost too early…I understand and if you ever want to talk about your loved one and express your missed moments, I am here for you. Although I am not an expert on grieving, I am an expert in how I feel about this loss as you are with your loss. I firmly believe that talking about our loved ones is completely and utterly natural and warranted and talking about your loved one or talking about Aiden with me is perfectly welcome at any time.

Be Thankful? But, how?

Today I cried.

Today it is because I can’t remember last Thanksgiving. I remember it being in Florida, I remember sitting around my table with all of us and my parents and Aiden. I remember him sitting in his booster at the table, I think…but I don’t remember. What was he eating? Was he even eating? Was he in pain that day? What was he wearing?

I remember some of Thanksgiving 2014. We were in New York still at that point, and this was b.d. (before diagnosis). Aiden was just a few months old, sitting in a high chair. My family was in town and we were all at the table. I remember thinking, since this would be his first taste of real food, what will his favorite food be? Will it be mashed potatoes and gravy like his mom and his aunt? Would it be turkey skin (after all, in our house, it has been dubbed turkey skin day) like his uncle? Stuffing like me? Beets like his Pa? Nope, none of those. I remember him eating turnip. TURNIP, of all things, like his great gammy. (May I interject a ‘gross’ here.) I also remember heading out to his Opa’s and Nana’s house and one of my favorite pictures ever taken was that day-the three young great grandchildren in a row all holding hands lying on their backs. Wait, was that really that day?

It frustrates me to no end that I can’t remember all these details and that I can’t remember last Thanksgiving, our very last holiday with Aiden. Why can’t I remember? Where are the pictures, the videos? I’m certain it never crossed my mind that we would only have two Thanksgiving’s with Aiden so did I just not pay attention?

I catch myself always wondering, what would it be like if he was here this holiday? Would he watch the parade with us and love the big giant balloon floats (balloons were his favorite) and anxiously await Santa at the end? Would he eat pancakes or would he want his old standby eggies? Would he wait patiently for the mashed potatoes, the turkey skin, the stuffing, the TURNIP or would he cry and point that he wanted to eat or sign ‘more’ like he did so many times before to signal he wanted to eat more? I bet he would love homemade whipped cream. What would he be wearing? Knowing his mom I’m sure it would be something cute. I distinctly remember his onesie for one of our Thanksgivings that said ‘Gobble till you Wobble’. Would he Gobble and Wobble? Then my thoughts move to somewhat more realistic thoughts. Would he be walking by now or would his bones have never healed from the harsh treatments? Would we be trying to get weight on him still and give him his standby strawberry pediasure? Would he have his precious hair back? Would he be over chemo or on a maintenance program that would make him sick?

These thoughts can beat down a person. I can’t be more beat down. What can I do? He’s not here. He’s NOT HERE. What can I do?

I think that’s why when someone asks me ‘what are you grateful for’ or ‘what is it you are thankful for’, I struggle for a minute, or more than a minute. Am I grateful? Am I thankful? Am I blessed?

I am…all of those things. It’s just hard to put it in the context of Aiden because I am so torn and in such a state of not understanding why this happened that I can’t feel anything but the deep grief. So, to reach for grateful, thankful, blessed? That’s hard. How can I say I’m thankful for something in light of what happened?

However, after the initial shock of the question comes, I know I’m very blessed overall. With regard to Aiden specifically, I do feel grateful that I had even just those short 17 months with Aiden. I am blessed that my heart grew to love a boy so much that he changed my life forever. I loved him as if he were one of my own children.

I am blessed that he loved me back.

Blessed that I watched him come into this life.

Blessed that my daughter shared him with us so completely from day 1. Even though I wouldn’t wish it on anyone, I am grateful that when the diagnosis was given, I was there to help and love.

Thankful that even though I would have given my own life for his, when the time came, I was able to say goodbye and tell him how much I loved him and how much we would fight in his honor.

Blessed that we have such a close family that we can see each other through these rough waters.

Blessed that people are out there, spreading our mission and the word about pediatric cancer. I am extremely grateful that I can count on family, friends, coworkers, neighbors, and strangers with large hearts that donate to our various fund raising activities or do things to raise money and awareness on their own in honor of our little man, that many have never even met.

Blessed that I am able to have all my children, my husband, and my parents close at Thanksgiving. I am thankful that this holiday, I will be spending the holiday together with all of them.

This Thanksgiving, we will keep Aiden’s chair close so he can visit with us and smile at us remembering him with such love. Even with all my wondering about what it would be like if Aiden was here, we will also put together all our memories of when he was. Maybe that will help put together the pieces I am missing, the pieces I just can’t recall from our last Thanksgiving with the little guy. And maybe, just maybe, through all the memories, we will smile between our tears.

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Make no mistake, even though it might take me a minute or two to muddle through answering a question about how grateful I am or what I’m thankful for, I do not take my blessings for granted. I do realize how lucky I am to have the love and support of family and friends, but especially that I know the unconditional and infinite love between a grandma and her grandson and I am thankful that even though it was short, that love lives on and will be remembered and cherished for all my remaining holidays…well, really, all my remaining days.

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A Passed Torch

Today, I cried.

I do most days but I woke up this morning after my 3 hour sleep to read again on Facebook that another young child has lost their life to this horrible disease. Cancer.

Once Aiden was diagnosed, I starting following kids/families on Social Media. I think my first follow was a young teenage girl, Ginny, during her second bout with cancer. She was local, I had met her mom during our first extended stay in the hospital, and I felt like I needed to follow this sweet girl and check in to make sure she was OK too. Next, I found and followed another baby, Isaiah, same age as Aiden, same diagnosis, same treatment protocol, similar timing.

Day by day, I followed different people that touched our hearts. Those that had the same diagnosis as Aiden, those that were local to us, those that were Facebook friends of some people we were already following, those that had won their battles, those that had a recurrence. Every day, I followed as many people as I could in order to figure out who my new ‘friends’ were, who Aiden’s warrior buddies were, who our support system was, what I might expect in our own journey. Really, I think I was trying to find success stories and if I couldn’t, what could I expect for this disease that Aiden’s doctors said was ‘chronic’? We were new to the ‘cancer’ world and needed to find out everything we could and following these kids and their families on social media was the best way I knew how to personalize it all and defy the odds.

When Aiden passed, these children all became personal missions for me, I think. I then started following families of angels so that the support was still there. So that I could give support and receive it. I fiercely followed kids that were really sick, hoping for miracles that they wouldn’t be a statistic, like Aiden. Keeping hope alive, maybe?

Here’s the problem with all of this. It’s ALL I know. This world is ALL I know. I am so totally immersed that I cry every day for those that we’ve lost like I know them personally. I cry with every new recurrence, for those kids that have had this beast 6 or 8 times. I read every post, see every graphic, realistic picture of childhood cancer (yes, even those of children with their wounded bodies, pictures of them surrounded by families as they are taking their last breath or even lying on a table in the morgue!). I even watch videos of funeral services for children I’ve never met and families that are now bonded with us because of something nobody should ever endure.

I feel this NEED to be in the face of it but when I am in the face of it day after day, hour after hour, it drains me. I once had a day where 3 children that I was following all passed. My emotional self was defeated! Each time, I see Aiden and I see what he was like and I relive it ALL every single day and multiple times a day with the similar stories.

I’ve thought about stopping. I thought about taking a break and getting off social media and out of the cancer world. I have a friend that has a daughter that had cancer, twice. He told me several times that he needs to separate himself a little from that world now because one is so easily overtaken by it. I understand that and I think that’s what it’s doing, it’s overtaking me. Sucking me in. But, how do I stop? How can I help make a change if I don’t know what’s happening? How do we find our children that need our help and need our comfort items and support if I don’t live this day to day?

I did try, you know. A couple days, here and there. And then my heart broke more because I felt like we weren’t keeping our promise to Aiden and that I wasn’t keeping my promise to my daughter to help her through it all. I wasn’t seeing all the children that were dying (7 a day, by the way, that’s the statistic) but I also wasn’t seeing the fight these kids have, the battles that are won, the changes that are coming because more and more people are fighting to bring awareness and bring change, the wonderful other small and large organizations that are trying to make a difference.

I’ve come to realize that this world did pick me, pick us. I’m not sure why, I’m not sure why it is so cruel as to not just have us live through this once with Aiden but to keep living through it in some way, shape, or form every day. Yet, I’ve come to hope (yes, hope is still in my vocabulary) that if I’m in this “stupid cancer” world every day, I can start to see a change. More kids surviving, more kids beating this, more kids comforted and more families supported through our work. More of kids LIVING! We did promise Aiden as our very last words to him that we would fight to have a world where this did not happen, where cancer is not a death sentence, where cancer treatments do not kill, where families no longer mourn a loss and live with permanent broken hearts.

So, here we are then. No matter how hard it gets somedays, I will live in this world for as long as it takes to make a change. I will follow more organizations that are funding research. I will strive to learn what we can do on a government level. We will continue to support our local hospital and transplant center and those families and children that are under 2 years old that need comfort during their extended hospital stays and harsh treatments. We were Aiden’s voice and we will continue to be a voice for those kids and families that deal with this every day.

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CureFest 2016, Candle lighting at The White House.

However, I will also try to take a break here and there so that it doesn’t eat me alive. I may not follow every single family and child. I may not click on the live video of a child taking their last breaths, not because I don’t care but just because it’s too real and too much of a reminder. Is it possible to care too much? I will strive to juggle it all so that it touches me just enough to make a difference and bring some hope but doesn’t become all consuming. I will do this and maintain my sanity and live life and have hope for others because I can. I can because I loved a little warrior so fiercely that when he passed, he handed me his little warrior torch to continue this fight. I know I can continue to make a difference because I’m Aiden’s Grandma, and by golly, I’m a warrior too.

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A strong little warrior

I’m not Ok, it’s not OK

Today, I cried.

Nothing unusual. This is my first blog entry, though, and maybe you don’t know that. My thoughts come from the place of so much emotion, so much sadness, and such a big hole in my heart.  Why do I feel the need to share them with you? I often feel like everyone is forgetting about my little guy and I just want people to remember, but also to learn, understand, and somehow be comforted if you are going through something similar.

My thoughts today are in response to those people that say things like “You’re doing great!”, “I can’t believe how well you’re coping”, ‘I’m surprised you’re ok, I don’t know what I would do?”, “How do you even go on?”, or the most recent rendition from a hotel maid, “I would die myself”.

Let me be clear. We are not OK.

I’m not OK.

In fact, I’m kind of a broken, crazy, jerk.

How do I know I’m not OK? It literally takes me over an hour to get out of bed in the morning. I debate with myself every day, after I wake up to the horrifying image of him, no longer in his body, in my daughter’s arms that last night and the events surrounding that. I relive it, EVERY FREAKING MORNING.  Do you know what it’s like to not want to open your eyes?

I also know I’m not OK because I can only get by each day going through the motions. I can’t do normal day to day things without having a side bar conversation with myself, crying, shaking, having a panic attack, screaming, or even throwing up. Take these ‘normal’ activities:

I can’t drive somewhere in my car without looking in my back seat and seeing him, in his car seat. I’m reminded about this every time I see the chocolate pediasure stains in my car. I can’t stop looking in my back seat for him. I can’t stop even though I literally should be facing forward to drive, don’t you think?

I can’t eat at Golden Corral, Perkins, Panda Express, Olive Garden, Wendy’s, Panera, a local restaurant we know of on the water, so many places- without seeing his face and what he was eating in those places.

It took me forever to eat scrambled eggs again. I can now, but I still cry every time I make ‘eggies’ and I eat eggies every day.  I will never be able to look at pediasure again. I absolutely hate the idea of kettle corn. Cream cheese makes me shaky and seeing a child with puffs in their hand leaves me sobbing.

I can’t drive by or even go near a specific hospital or even ANY hospital. I go out of my way to avoid it or I’m quite sure I will drive my car into it at warp speed.

I can’t go down the baby aisle in the grocery store without my heart racing, without crying. You’ll often find me sobbing over a bottle of juice, diapers, or hot wheels cars…on my knees sobbing in the middle of the aisle.

I can’t watch videos or see pictures of kids, not even those that are in my family or are children of friends. I can’t run fast enough away every time I see a child that is almost 2 or in a stroller or doing things that Aiden should be at his age. Seeing children makes my heart physically hurt and makes my knees weak.  I ask out loud, “Why can’t we have our baby with us?”.

I can’t go to church. I can’t walk in without shaking. I am so angry at my God right now, I can’t make it to church and I can’t talk to him or pray to him. He knows this, but it’s a piece of me that is missing. I am missing my whole spiritual self. It’s just, gone.

I want to slap anyone that tells me that Aiden is in a better place and he’s no longer suffering. I understand people don’t know what to say, but don’t say that. I have no tolerance for people that have ‘bad days’ because they lost a sock or got stuck in traffic. Don’t make me slap you for no reason. See, I am kind of a jerk!

I don’t want to celebrate holidays. I certainly will not celebrate Christmas or engage in tradition and I can’t even fathom trying to decorate for Halloween or see kids dressed up for Halloween. These have always been two of my favorite holidays, now, I feel…nothing.

Mickey Mouse gives me the worst reaction. My stomach wrenches when I see a child with a stuffed Mickey and I gag when I hear the Hot Dog song. What kind of a person does that?

I’m afraid of police men, ambulances, doctors. I know this because my heart skips a beat and I break out in a cold sweat when they come in my path.

I cry when someone tells me they have a fever. I sobbed hysterically when my 18 year old son had a fever and a sore throat and a rash and was at the urgent care. But, we’ve been through so much worse? Doesn’t mean I’m not frightened out of my gourd that something will happen to someone I love. My absolute worst fear…that this could ever happen again.

I sob every time I hear the songs Hello, Shutup and Dance, This is My Fight Song or In the Arms of an Angel.

Seeing a plane makes my head hurt, seeing the moon makes my eyes hurt, seeing frogs jumping in the water makes me clench my teeth so much that I may break one someday.

Alas, somehow, I do get up in the morning. I do eat eggs. I do get in my car, I have several Mickey Mouse stuffed animals in my direct sight every day, I have the fight song as my ring tone, I have giant canvas pictures of Aiden at Perkins and our local restaurant on the water that I see every single day. I sleep with his froggy and my husband and I fight over his blanket at night. I look for the moon, I look for planes, and I giggle a little with clenched teeth when the frogs jump. These things keep Aiden near me, alive, even though I have to go through a knee jerk reaction to get to a place of acceptance.

I do finally get up in the morning because I have to work to live and to keep some sanity. I have kids, three beautiful grown children that by the grace of the God I am so mad at are still with me and still need me to help and protect and love them. I get up because I somehow am under the delusion that I am a necessary voice to save kids in the future. We promised. We promised Aiden we would make a change in the world and fight for all other kids so this wouldn’t happen to another family.

I won’t ever be ‘me’ again. I feel like a rougher, stronger in some ways but weaker in others, more fearful, less loveable, more distracted, more distant yet more alert and aware, slightly more watery version of myself. I won’t ever be “normal”. I will always grieve, I will cry and sob many times in a given day, I will work to get up every day (God Willing), I will worry about everyone I love and keep my kids extra close for as long as they will let me.

But, every day, I will also look forward to those brief moments when I can smile at the thought that I loved this boy so much and the memories are cherished and appreciated. I hope you will all still accept me for what and who I am now and I hope you will never have to understand that going on isn’t an option, it’s just what happens. Life happens still, what we do with that time, though, is up to us. I feel like anyone that has a great loss knows exactly where I am coming from. Trust me, I understand you.

Next time, I will try to be more uplifting and let you know why we choose to go on in the way we do but I can give you a hint, it’s because I’m Aiden’s Grandma. fb_img_1475617547100