Lost Receipts

I have been meaning to write this post since September. So many thoughts running through my head and not knowing where to start. The title came to me before anything else, all else following suit as natural as natural can be these days.

I feel like Grayson and I lost our receipts. He is broken. I am damaged. And we cannot "return" to the past. We cannot make it all go away. At least he can be fixed. He's being repaired every week, every day. Whether it's an oral med, a neon green plant-derived liquid pumped throughout his little body or an injection he has tools to fix him. And he likes his tools. It continues to amaze me while I sit here with him during Batch #2 of Interim Maintenance how comfy he is here. This hospital is his second home and he don't mind a bit. I am not exaggerating. He is happy here.

Me, I don't know. It is not such a tangible fix for me. Anytime anyone asks how I am the only word that comes to mind is DAMAGED. I don't say it but I think it, actually scream it inside my head before the typical "okay" or "hanging in there" or "fine" rolls off my tongue. That word sums it up for years to come, actually the rest of my life. I will never be the same. Yes, I still find my best source of happiness and serenity in my children. That is how it was and always will be. Yes, I still find my protection, laughter and level head through Charito. Yes, I still find my parental soul and cushion and direction from my parents. But, most of what I think and do on a daily basis is corroded. Tweaked from what it used to be.

I feel like I live in another dimension, a parallel universe. I eat, sleep, shower, cook meals (not many thanks to friends), change diapers, do laundry, and shop like any other mommy or person out there. But, when I am out there it does not feel what it used to feel like. I enjoy the fresh air much more than ever. I find solace and peace in the little moments, they fill my heart in an enormous fashion. I do not enjoy the crowds. They have become our nemesis. The hustle and bustle I used to crave is not as pleasant anymore. I cannot stand to listen to little bickerings from the person in the checkout line or a random lady's biggest worry over what to make for dinner. The things I used to do. Not anymore. It seems so petty. I have a new perspective on what matters in life. I guess that is a lesson I can take from this but I wouldn't want this lesson in this way to happen to anyone else. The decisions I make on a daily basis differ from yours. The restrictions we now encounter as a family are different then yours. Where we can go and what we can do is so limited. I learned that when trying to plan Triston's 5 yr old bday party just so his brother with Leukemia can participate. And we dont even have a guarantee that will happen. Ridiculous but necessary. We worry all the time about so much. It's like taking what you typically worry about as a parent and mulitplying times a thousand. The worries and what ifs do not end. I am not minimizing what others go thru ( the good and the bad) by any means. I am just trying to give you a picture. There is such a spin on our lives right now it is hard to keep track of anything. To be honest-I have never used the calendar on my phone until now. I cannot keep days straight at all. I get them wrong every morning when I wake. Days mush together. I keep track of anything with chapters like which phase of treatment we are in or a significant day at school for Triston or what types of meds we are on that particular week. It all revolves around G-like characteristics. Then there are times I want to yell to the world, " I have a baby boy with cancer-can the rest of you shut up about your minute rantings!", but what good would it do. It's just that crowds make me feel like I dont belong in this world. I do not feel as confident as I was. I sure don't care what people think but I do feel pretty small in the world. I dont care what someone has to say about my looks, a glare at G or anything else. You are not the one living our ill life. I just hate the way I feel in it. I am focused on my family and nothing else and anything else is a nuisance and not a pleasure. I hate that cancer led me to switch that persective but it is what it is.

I make the time to do the stuff that has to get done-cook, give medications, clean, homework, hug and kiss my kiddos, etc but struggle to fit in the little stuff like trimming the kids' nails, switching out seasonal clothes/shoes, lil mommy projects around the house, decorating for holidays, etc. There are days it isn't fair that I have to force myself to complete the things that used to be automatic for me. There is only time for the HAVE TO's and the CAN WAIT's linger or build up. There was even a time through August and September that I thought we as a family were invincible to the "other things in life". You know those days that string along with little mishaps that you eventually pour out to your mom or bf was "one of those weeks of when it rains it pours". I hated that we were still susceptible to all that-the flat tire, broken light fixture, pneumonia, etc. For awhile I thought someone/God would KNOW we had enough on our plates and didn't need anymore. But I guess life goes on. Even those snowball kinda weeks. It didn't make me want to scream any less though. Cancer and other evils sure don't care about holidays or the kind of work day you had or anything else on that plate of life.

I will never look at anything the same as I did before. Things always seem a little fuzzy through my eyes. Like goofy glasses. Really it does. I try and see everything the way I did but it just doesn't surface. Something was stolen from me that day of diagnosis. I cannot explain what exactly but it happened. I feel cheated. Robbed. I didn't get to soak up the baby bliss of a family of 5 for more than 5 days. We didn't get to observe that brotherly connection in those first weeks as I had pictured it in my head. I know there will be "first moments" in Caden's life I may miss bc I am away caring for G. I know that as much as we worry about all our kids I worry of T the most. He will remember all of this. Will it make him stronger? I am positive it will, but with a limp or bruise along the way. That scares me so. Beyond description.

Believe me----I KNOW I am not losing a son. I was not delivered news of his death. I thank God everyday for that. Everyday G is here I make the most of. I drop anything anytime to see what train he wants me to push along the track or his newest antic of a proud, rambunctious 2 yr old. I do that now. He is an amazing fighter each and everyday. I am grateful every minute of everyday for him and how he carries it with such strength. I truly believe we gave him that strength. Without even knowing it for the past 1.5 yrs of his life we built up that strength in him soley by being the parents we love to be. Team Carper did that for him and it will be what gets him thru this-including his own additions of G-isms along the way. But, that day I feel I loss something. A Leadership Nurse I spoke to last night helped me realize this. It is okay for me realize and admit and I lost something that day. That conversation gave me the push to write this post finally. What was I hiding or hoping not to disclose? What did I lose? The taken-for-granted-life we had? His perfection? That vision of what I thought he might be one day? A piercing wound to his innocence? His sweet innocence. I dont know. Not fair is what I know. The unkown answer to why-why beat that question to smitherings...it doesn't change anything. That answer wouldn't make any of this go away. Any easier-no. I think I am better off, content knowing there was nothing Charito and I could have done to prevent this or change our situation. It happened so deal with it. And really-I am trying as best I can. Everyday I press on with our new sort of normal for the sake of my family. It is what needs to be done to get back to some sense of hope for an easier future. A future of family vacations EVERYWHERE. T wants to go to Japan, Paris, the Grand Canyon and the list goes on. I wouldnt want to experience those places for the first time without my 4 favorite boys. Through their eyes.

I am damaged goods and Grayson is a broken item but together we will get fixed. And something tells me we will be healing each other day by day. How could that smile or laugh of his not patch up a wound?!

The first few days of this hospital stay I did not have my laptop. I fluffed around on my phone thinking of old friends and memories or things I needed to catch up on. I remembered my old college friend Jamie posting a link about a baby boy, Ewan. It was back late September. She linked it to her post as a cry for prayers for this newborn. I am not even sure if she knew the family personally or the story touched her the way it did I and she was compelled to post it. I remember reading that story of tragic news and crying so hard. It was that gentle reminder that any severe illness is devastating but that each type has its own seriousness and individualization. It's own place on that spectrum of harshness, age, time frames, and pain. There are people hurting more than I but plopped into a world so similiar when it comes to a child, a mother and a fight. I read that link back in September and realized how often I had thought of Ewan since then and never got around to keep up with that beautiful blog. I messaged Jamie asking how he was doing and if I could have that link again. Her response froze seconds in time for me. That newborn passed away Oct. 4th. I thought back to what I was doing Oct. 4th while a family in Washington mourned the death of their 16 day old baby boy. I had to read the blog. I had to know how it all ended. I haven't been able to stop reading since last night, except to write this. A post that shares our similarities but most evidently our differences. I still have my baby boy. I have had 2 yrs with him w many more to come. But I cling to her blog bc it is so parallel to my feellings as a mother, as a woman walking this earth like you. I will catch up to the present day of her blog by tonight and thus far there is not one post that hasn't grabbed me and yanked so hard at my soul it aches. She is a beautiful writer and I couldnt express a handful of those familiar feelings better. You know my story and I hope you get to know hers. It is heartwrenching but poignant. Etched in my memory forever. You know our story and you will be able to pick up on those similarities pretty easily. You should know me that well by now. Any mom will see those red flags of heartache. Any dad will want to reach out to the computer screen and shelter all involved. Any person will hurt for the hurting. That is what we get for being simple humans with such complex adversities in our lives-no matter how long or devastatingly short they are. It is what is handed to us and left to us to conquer. And I will admit there are some days that I believe I was handed this for a reason. What God's intention is I am not sure yet but one day I hope it will all make sense. And believe me-there are days I dont even see that being possible, it hurts too much. The fog is too thick. Until then I will continue to jump from emotion to emotion-anger, pain, clarity, tears, laughter, pride and honor. Honored to have my golden boy in my life every minute. Until then I will wish I could find those lost receipts and change the paths drawn for us in these recent months. Until then I will work the hardest I have ever worked on anything in my life to fix us. It is all I know how to do anymore. Fix us. Be a nurse. Be a warrior. Be Grayson's mother-and oh what a joy that is. Being the mother of my three boys is the job I was meant to have in life. Charito and I were meant to lead our 3 into this life of love we proudly embrace. Love-it is both that simple and complex when it comes to your family in distress.

Please read Ewan's blog. The first few reads will possibly make you think there is no way you could read further but it is so worth it. His mother shines an unimaginable light on life and loss that as a mother I completely submerge myself in. Her words are priceless. His life- pricelessly precious.

http://www.team-ewan.com/