Tuesday, August 20, 2013

To my miracle man:

To my miracle man:

All my life, I knew I wanted to be a mommy.  I knew I wanted you even before I knew who you would be.  I imagined who you would become and what you would look like.  I dreamed of holding you in my arms and doing everything I could to give you the best life.  I couldn't imagine a life without my baby.  When you came in to this world, you were everything I ever wanted.  As I admired your tiny little fingers and tiny little toes, I couldn't remember what my life was ever like before you.  My life changed in every single way!  Your blue eyes are far more perfect than I ever dreamed they would be...your little nose and lips every ounce of amazing!  Although I have always had to wait and work for those glances and smiles, each and every one is everything I ever wanted.  I never expected that you would struggle or know what pain is.  I never dreamed that you would be examined and proclaimed anything but perfect.  As your life unfolded before us over time, we cried, we laughed and we grew with you.  I would never want to change you because to me, you are perfect.  I hope that you know that.  I hope that you know how much I love you.  I hope you understand that the only thing I would ever change if given the opportunity, is that you could be pain free and that those little things weren't so hard for you.  I would give anything to hear your voice and words to explain to me what you want, what you like and what you think.  I would give my left arm just to know what your favorite color is, your favorite song, your favorite place.  I would give my right leg to hear you say you love me.  I wish I knew where you hurt.  So many things that I wish for but understand is very difficult for you.  That is okay.  I understand you anyway.  I know you regardless of your silence.  As I watch you do things that doctors said you never would, I am so proud of you.  I am amazed by your strength and resilience every single day.  You change before my eyes from month to month and I continually learn new ways to care for you the best I can.  Although you are not inside any specific box and your diagnosis is still unclear; one thing to me is clear as ever...there is no label that can describe the miracle that you are.  Despite your challenges, you continue to smile, you continue to breath, wake up each morning and teach me to be patience.  Ahh patience, something I have never been good at.  You have taught me so many things and made me a better person!

To my sweet miracle, I love you with all my heart!

Friday, August 16, 2013

Of course...

Only 4 days until we fly across the country for Carter's Make a Wish trip!  The excitement in our house is tangible when you walk through the front door!  Suitcases are filling up and the only topic of conversation is San Diego.  If I could box it all up and keep these moments and memories in a shadow box or live video, I would.  I envy those families on TLC who have their own reality shows and can watch their big days over and over again whenever they want.  I wish that we could hire someone to video this entire trip.  I want to bottle it up and keep it forever.  I know I have already written about my fears and long list of "to do's" before we go, but I find myself overcoming my previous fears and developing new ones.  I worry about the little details that are still unknown.  Will Lily sleep in the hotel room with all of us sleeping inches away...she is the lightest sleeper I've ever seen and I thought I had that record!  Should I take Carter's wheelchair or just a double stroller?  Will I be a ball of nerves the entire trip that I want so badly to just enjoy?!  I know that all of these things will work out one way or another, whether I plan every single detail or just wing it.  I know that.  I just want so badly for every thing to be perfect.  This is a trip of a lifetime, right?!  How many more times in Carter's life will we be able to do a trip to this magnitude?  This isn't a luxury we have when deciding on going on a family vacation.  Not just financially, but because the idea of flying and deciding on all these things by ourselves would be too much.  If Make a Wish wasn't helping us with the planning and ADA details, I don't think we would be able to brave it alone.  We aren't taking this trip for granted for an instant.
To top it off, Carter isn't doing all that well this week.  He is refusing food and crying in pain.  He only took 8 ounces of formula today and I had to vent/empty the other tube feed because he was miserable.  This evening, he is refluxing even though he has no food in his stomach.  He went almost a week without a bowel movement so I have pushed miralax and milk of magnesia to very little avail.  In a desperate attempt to make sure he is okay, I have decided to take him to the emergency room tomorrow.  This way we can do a total work up to make sure he is okay.  I may be over worried, but this time, I don't care.  My mommy gut tells me that something is bothering him and I won't be able to relax and breath until doctors assure me that he is okay.  Out of all of my fears and unease, my biggest one is that Carter will be miserable or painful the entire trip.  This trip is for HIM!  I am terrified that something will go wrong, that we will end up in an ER in San Diego.  This trip is meant for getting away, leaving behind the medical struggles for 5 days; to just live.  When I stop and look at my reasoning, I could kick myself.  How can we leave behind all the medical mumbo jumbo?  That is impossible, no matter how hard we try.
My entire day was spent cleaning the house...mostly shampooing the living room carpet.  Carpet that has to be steam cleaned every other week to eliminate the medical smells.  I think the smell of Carter's Mito cocktail is permanently a smell everywhere I go; my van, the carpet, Carter's bedroom, my kitchen.  I'm sure most all Mito parents understand what I am talking about.  Once I finished shampooing the carpet, I began packing a suitcase with formula, G-tube extensions, bolus syringes, blue pads, diapers, extra G-tube button, and med syringes.  Then I went over in my mind 10 times, what things I will need in my carry on bag for the 5 hour flight.  While on our trip, every day will be filled with medical mumbo jumbo.  It is there, it is Carter's life line.  There is no running away from it.  I am okay with it, I really am.  I am just scared out of my mind that Carter won't have fun.  I am desperate to make sure he does.  I am in panic mode with only 4 days until we leave.
Maybe it is in my sleep deprived state of mind, but I could cry tonight.  If Make a Wish only had a magic fairy that could grant any wish in the universe, it would be that Carter could live pain free.  Just when things are going so perfect and Carter is thriving, progressing and doing so great...his GI function just won't get on board.  When I have asked his GI doctor what more we can do, she always tells me that we are doing everything we can and that this is going to be a battle throughout his life.  I just can't accept that.  Carter suffers from GI dysfunction every single day of his life.  Out of his 12-14 medications he gets a day, 6 of them are stomach/GI meds.  I have laid in bed, wide awake for hours for the past 2 weeks just going through all the things I wish I could control.  I lay awake in a tizzy; worried over so many things.  The light at the end of the tunnel right now, is San Diego.  I feel like it's so far away, yet so close.
I will do whatever it takes to make sure Carter has the time of his life.  I will sit in the ER all weekend, get no sleep and drive myself crazy just to make sure this happens.  Fight I will; yesterday, today, tomorrow and forever.

Thursday, August 8, 2013

My little man of steel

In a month, we will be walking to raise awareness about Mitochondrial Disease and funds for research in hopes to discover a cure.  That dreaded reality that I try my hardest to push away.  There is no cure.  As I update Carter's video that displays his life in a story format, I struggle seeing what all he has been through.  I have become a professional at taking one day at a time in regards to the disease that is tangled amongst his DNA...the boo boo that I cannot fix.  But watching that 19 minute video, reminds me that in 4.5 years, my little boy has fought so hard just to live.  Through every ache and every pain, he has smiled.  How that boy continues to smile, even when he is in the hospital, has been poked more times that we can remember, therapy after therapy, specialist after specialist, I am not quite sure.  He doesn't even cry or flinch when he has an IV put in or blood drawn for the hundredth time.  He is the toughest kid I've ever seen!  Many people tell me how strong I am.  They say that they don't think they could do what I do.  But I beg to differ!  What I do is simple.  I love my son.  I do what most parents would do; I walk beside my child and put up the toughest fight known to man kind.  I refuse to give up.  I refuse to accept that there is nothing doctors can do.  I will never settle for what those statistics say.  What keeps me strong?  That smile!  When Carter gives me that big, bright toothy smile, everything in our world shines!  When I hear his rolling, contagious giggles, I feel my shattered heart finding where all the pieces belong.  I am not the strong one, my son is.  It's his strength that holds me up.  When everyone thinks that I am what holds Carter up, it is a misunderstanding.  Carter is holding me up.  He teaches me so many things that I never imagined I would.  As I follow him through his therapies and procedures, he reminds me how tough he is.  He proves to me that super hero's do exist.  The impossible is possible.  
When everyone is asleep and it is dark, I peel off my coat of armor and allow my skin to breath.  This is when I sneak into Carter's room and stare at him as he breaths; wondering what he dreams about.  This is when he is the most relaxed and calm.  It's amazing to me to see his muscles soft and extended; something that he has no control of when he is awake.  Many nights, staring at him isn't enough and I climb into bed with him.  Holding him as he sleeps is probably one of my most favorite moments with Carter because it's just him and I.  I can put my cheek to his and inhale his familiar scent.  I can kiss his soft skin without him pushing me away unintentionally.  It's time that I can be selfish.  I can hold him as long as I want!  Raising Carter is not hard in the sense that many people think it is.  Of course, the emotional and physical part of taking care of a special needs child is hard.  But being a mom to this extraordinary child, is not hard.  I would carry Carter forever, drive to the sun and back to find whatever he needs, and have every hair pulled from my head just to keep Carter with me.

As the fight to find a cure continues, so does life.  I will keep drawing off of Carter's strength and loving him with all my heart!  I will hold on to that thing called hope, for as long as my heart beats.  We will fight hand in hand, step by step!

Wednesday, August 7, 2013

Preparations unlimited!

Only 14 days until we leave for Carter's Make a Wish trip!  It's coming up fast and there are so many preparations to be made!  I am scrambling to make sure we have all meds refilled and have been making list after list of all the things we cannot forget.  Most vacation lists consist of flip flops, sunscreen, bathing suits, shorts, ect.  Of course, our lists include those things too...well, one of my lists.  The other lists contain Carter's medical history and doctors numbers.  Another list has all of the medical supplies we can't be without and the last one is my "to do" list of things to have finished around the house before we leave.  I am probably a tad bit OCD when it comes to my house, but I don't like to go on vacation and come back to a mess.  I like to come back to a clean home that welcomes us as we come through the front door!  I'm feeling a little overwhelmed at the idea of packing for 5 people for such a huge trip!  The typical things that you pack for a trip are simple to replace once we get to our destination and are the least of my worries, but it's not easy to locate and obtain blue pads, Metabolic cocktails, Mic-key extensions, neocate formula...ahh, another big stresser.  How the heck am I supposed to pack 8-10 cans of formula?!  I haven't flown with Carter since his feeding tube was put in.  I never had to pack these things before, except when we have driven places which is simple in comparison.  I'm not entirely sure how it all works, but I'm thinking that we can each check a bag.  So I will pack the 3 kids and myself into one suitcase and pack another suitcase full of just medical supplies and formula.  Make a Wish assured us that we can take all of his medications on to the plane with us and the stewardess will put them up front in a refrigerator.  I can do this, I can do this, I can do this!  The trip itself will be amazing, I am sure of it!  But the packing and flying part is what scares me the most.  How will we entertain 3 kids on a 5 hour flight?!  I am most worried about Lily (who will be almost 21 months old).  She is a very active child who wants to do what she wants to do when she wants to do it.  I am so thankful that my husband will be there to help out!  In the 5 years that we have been married and over 10 times of flying with my older 2 children, he has never flown with us since his work schedule never allowed him the time off.  That brings me to another list I am working on; entertainment for the plane.  I am trying to keep our bags as light as possible, so deciding what things will be successful and enjoyable for 5 hours is actually very tricky.  So far, my definite ideas are the iPad, Nabi, coloring books, crayons, movies for the lap top, and mommy's phone!  Oh, the joys of modern technology!  Despite all the list making and preparing, I still anticipate monstrous melt downs and tantrums in the classic terrible 2 sense.  I am mentally preparing myself already!  I am taking myself to a happy place; sitting on the beach, watching my kids swim with dolphins, exploring the gigantic zoo and enjoying our peaceful family time.  We are going to try to forget all the medical mumbo jumbo for the 5 days and just enjoy Carter and his sisters.  Forget all of our worries back home and just live it up!  14 days!  Despite my long list of things to do to prepare, I KNOW it will be so worth every single bit!  And I can't stop saying how amazing Make a Wish is for all that they do for families like ours!  Without this granted wish, a vacation to this magnitude would not be possible for us!  I am so excited to go on adventure after adventure in such a beautiful city!  And to see my children smile and laugh as they see new things for the first time!  I know that this 5 day trip will fly by and soon be a blink of a memory with only pictures to remind us of how amazing it was.  I want the 14 days leading up to it, to go by slowly because I understand how fast time goes and how beautiful this trip will be.  I don't want to miss one second or stress over the lists I need to create.  I will look back at my pre-vacation stress and kick myself for ever worrying.  I want to embrace the moment.  This life can be tough, it can knock us down and take our breath away several times a day; but one thing is certain...this life is great despite the challenges.  Each of my children are so wonderful in their own ways and I wouldn't change a thing about them.  My son is so strong and determined to do all the things that we were worried he may never be able to do.  He is so absolutely beautiful in every way.  That little boy knows how to love and live; something many healthy people never learn to fully do.  My daughter, KayLeigh, is so thoughtful, creative and full of life!  She never hesitates to help out with her siblings or assist them when they struggle!  She has been right along side Carter through his battles encouraging him that he can do it and never fails to tell him how much she loves him.  That is something that can never be replaced or taught; that is just who she is.  My daughter, Lily, is the most rambunctious, motivated and strong willed baby's I have ever seen.  I can't imagine her ever letting anyone tell her what to do because she has ideas of her own.  She gets frustrated when her big brother knocks her down or pulls her hair, but she gets right back up, pats his back and gives him a toy.  She loves unconditionally and makes me so proud.  When I take her to Carter's classroom, she explores all of the medical equipment with wonder, not fear!  She enjoys saying "hi" to all of his classmates.  She doesn't see difference in the world; she only sees new things to learn and love.  I couldn't ask for more wonderful children and I am the luckiest momma in the world.  I can't wait for them to get to
San Diego and just have fun!  They deserve that more than anything in the world! 14 days!