Let The Games Begin…

LINZY- Everyone says things like, “Oh You’re SO Strong”, and “I Don’t Know How You Do It”, or “He’s SO cute”. Well, the truth is… I’m not strong, I’m exhausted. I do what I have to do, just like anyone else would. We do what have to do for our children. As far as my son, and how adorable he is? Yeah he’s cute. Wicked cute, but not at 3am when he wants “Mommy Nuggles”. I’ve snuggled with him for 5 years straight. At night, I would just like to snuggle with my husband in my own bed for five fucking minutes.

Having a newborn is hard, but not nearly as hard as having a newborn and a five year old bone marrow transplant patient who has severe behavioral problems to boot. He’s annoying, really annoying. My son is a vicious person at times who thinks it’s okay to knock over his little sister because she sat next to him. He smothers our newborn with “love”, and I can’t pee alone. Ever. It’s not a joke, nor is it an exaggeration. I’m dying for five minutes alone. Even when I shower, all I hear is him reciting lines from Ace Ventura. Or screaming his head off, and his scream shakes the house.

Of course I love him, and I love being a mom. However, we all have our days. Minutes, in this house we go by minutes. We have to, because expecting to have a good day would be absolutely ridiculous. Did I say house? I meant to say hospital, because that’s where we’ve been living off and on since October 16th. He’s been through more than any other child his age every should. BUT WHAT ABOUT US!? WHAT ABOUT THE PARENTS? People say they can’t imagine what we are going through. That’s true. THEY CAN’T.

I just handed him a baseball that was signed by the Red Sox that he got before we left Boston Children’s Hospital yesterday. All we can picture is him chucking it at his sister. Everyone says boys are crazy, but this one is always one second away from disaster. Damage Control: Always On. I don’t mean little problems, I mean catastrophic issues that can blow up for no reason at all. I’m exhausted mentally, physically, and emotionally. Can I please take a break? No. No I cannot.

All I can do is laugh. Or try to anyways.

Cherish every good moment you may have with your loved ones. Don’t take them for granted. We wish and hope for them every second of everyday.

That’s just not our reality.

Silly Faces!
Mike & Lucas

7 thoughts on “Let The Games Begin…

  1. Wow – this is awesome! Thank you for your honesty about “real-life” ! I am reading this in my daughters hospital room – as she was admitted AGAIN! My sister shared your blog with me via social media and I am so grateful to read another parents view on life as we know it! In this day of technology – many peoples lives look so PERFECT – yet it is blogs like this that show our TRUE SELVES – our HUMAN SIDE of life! Nothing is perfect – we just do the best we can with what we are given – and we deal with life as it comes – like you said – sometimes only in minutes – because that is all the energy we have! Thank you! Prayers to you and your family – Many Blessings to you and your littles!

    1. Hey Alicia! Thank you for reading our blog! I’m so glad it was shared with you. I’m sorry your daughter is in the hospital again. We just dealt with that ourselves. What is your daughter going through?

  2. I can absolutely relate. We are 10 years post transplant this coming April, and I call our life since my daughters diagnosis “Treading Water”. As long as we can keep our heads afloat. It’s scary and exhausting, and also beautiful all at the same time. My daughter has been dealing with side affects since her transplant. From skin issues to school and learning issues, to growth and weight issues, where she is labeled clinically as “failure to thrive”, which I actually DESPISE seeing on paper. She’s beautiful and caring, passionate, determined, strong willed, and focused on happiness every day. We also battle EVERY SECOND of every day about getting her to eat and her calorie intake. We get her cataracts from radiation checked every 6 months, and yearly she gets her hearing, echo and ekgs, shoot I feel like she has every “oligist” at CCMC and The Jimmy Fund. My heart aches for you Mama. I wish you never had to join the “Momcologist” club, I truly do. 🎗

    1. Hey Kristi, thank you for reaching out! It is very scary to go through what we are going through. I’m glad you can relate to this blog. It is exhausting, and it is beautiful. Especially if the end result is positive. My son did not have cancer but he did get treated like leukemia patient. I will go into detail with his story and another post but I am so glad that this blog has already reached a few transplant moms.

    2. Whoa!!!!
      Hi Kristi, I’m Kristy, and I think you may be my cancermom soulmate lol. I also have a daughter who is 10years post BMT and treading water is the perfect description our post transplant life!! My Ava also deals with side effects galore, including weird skin issues, learning disabilities, growth deficiency, she’s had cataracts removed in both eyes and most recently she’s developed super painful (but benign) tumors all over her joints. It’s like I’m forever waiting for the other shoe to drop!! But my girl is such a badass! Shes amazing, kind, beautiful and so stinking strong (so much more than her mommy lol) she is a daily reminder of just how precious life is, I only wish she didn’t HAVE to be!!!
      We should be cancermom friends!
      Find me on Facebook! Kristy Freeman Barnes. Bless!! ❤❤❤

  3. As always your blog is refreshing and so damn TRUE. I remember the days of no sleep, feeding tubes, and central lines and an unruly toddler like it was yesterday. Everyone thought it was SO cute as I was literally losing my whole mind. Keep talking about it girl, that’s the mistake I made!! It does get EASIER!!!Thank you for sharing. Bless!

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