Saturday, February 22, 2014

Finding Traces of Normal

The bedtime routine has always been crazy in our house. I think it has something to do with being naked. Once my kids' clothes come off, they are certified maniacs until after they've been cleaning and dressed in clean pajamas.

But once their hair is almost dry from jumping on the beds, when they're all warm and smelling sweet, I love harboring all three on my lap for books, Daddy's stories, songs and then prayer.
Hands-down. My favorite time of day.

After I put Megan down, I come back to the boys' room where Andy is finishing their bedtime story. Usually, it's a continuation of a series of Sinke' and his little monkey, having great adventures in the jungles of Africa. My boys live for these stories. And Daddy tells them best. Once he says his goodnights, I sit down between the boys and each of them lay their heads on my legs: Ben on my left and Jack on my right. We chat a bit about our day, go over the highlights and talk about plans for the next. Their thoughts at this time of night are especially precious.

I wait until they're nestled comfortably and then I stroke their hair as I sing. My boys find this especially soothing. They've always been hair-twirlers. They never sucked their thumb, had a pacifier, or had a special blankie to help them sleep. But they would twirl their hair. And that would help soothe them to sleep.

Our bedtime routine has changed slightly over the past few days and weeks as we've had to accommodate Ben's needs. Sometimes, this has meant just washcloth baths for him, just wash his hair, or we had to take special care to keep the mediport bandages dry. All of these have been met with surprising ease from our son.

Perhaps I've been the one to have the hardest time.

The first night I came home from the hospital to spend time with my other kids, it was difficult leaving Andy and Ben at the hospital. But the part of night I hated most was singing Jack to sleep. I only had one head on my right leg. One head of hair to stroke. And it was soft, not coarse like his brother's after the solution they put into it to protect him during the MRI. I could barely get through the songs without sobbing. After I left his room, I couldn't stop.

After Ben's brain surgery, it has taken extra care to be able to stroke his head without making his incision uncomfortable. I can feel the dissolvable sutures. The places where his skull was sewn back together. His hair has been coarse and I can still smell the orange cream they spread over the area to protect it from infection (while also matting the hair down during surgery.) But still, I stroke his hair as I sing. Lightly. Because it brings all of us comfort.
Well, tonight, for the first time in a few weeks, the bedtime routine felt more normal. Ben didn't beg us to wear his daytime clothes to bed because his arm was too sore from the mediport insertion to lift into the air. He took a bath with his siblings and when it was time to sing songs, I felt two soft heads of hair in between my fingers with very little trace of that hospital smell. It was beautiful. And for a moment, everything felt normal.
Andy and I are trying not to take more than one day at a time. That's when we start to get overwhelmed. We are determined to soak up individual moments, savor them, and tuck them into our memories as special and precious. Because none of us - none of us - are promised tomorrow.
And these moments I spend with my boys, in the quietness of the night, with two heads resting on my legs, will always be among my most treasured moments.


  1. As we bathed our little ones tonight, I thought about you all. Thanks for sharing and know you are in our prayers.

  2. Finding traces of normalcy is one of the best ways to cope and survive. Looking for the silver lining is so important, its the manna from heaven. My son contracted E.Coli and after fighting for his life went into kidney failure. He now has a transplant. The silver lining is sometimes the only thing that got us through. I would write down all of our blessings and when we would see Heavenly Father's hand in our lives, then look back and read it on the especially bad days. My prayers and thoughts are with your family, and from one mom to another so is my heart. I know it can be so hard, keep the faith and find comfort in it.

  3. Thank you for sharing this Mindy. We too have a very consistent bedtime routine that we can't seem to let go of. Some nights my patience wears soooo thin as I sing while stuffed toys fly. But in the quiet calm when stella remembers one more thing to pray for and Jacob's eyes droop while he smiles sweetly I am overwhelmed with gratitude. Stella prayed that God would send his angels to protect Ben tonight....and I pray the same for you. xo

  4. I am praying for you honey...Remember Jesus is the same always! We all love you all,
    Anna Graziano and Children

  5. I am a mother, grandmother & great grandmother, and my heart is aching for you. I am praying for a miracle for Ben and for you.

  6. God is bigger than...(fill in the blank). My children and I are praying for Ben.

  7. What a sweet glimpse into your precious routine; thank you for sharing this with us. <3

  8. I have a new granddaughter that will be here in less than 8 days..I pray daily for her health and my daughter and my other granddaughters..I will be adding your sweet Ben to that list of little loves in my life...God is Good..

  9. I prayed for Ben and your entire family at mass this morning, Mindy. I hope the sun is shining where you are today and that you're enjoying lots of family day at a time! xo

  10. Normal-feeling moments...they are like gold, aren't they? I read a friend's blog the other day and he described moments like those "tear-soaked moments of joy". I thought that was just about the perfect way to capture something so incredibly difficult to describe. It's absolutely joyful, but it's absolutely gut-wrenchingly difficult at the same time. While our circumstances are different, I totally get what it must have been like for you to have that precious bedtime routine.

    Please know that you all are continually lifted before our Heavenly Father in prayer...

  11. And so it is. Despite this 'C'ness, so much has stayed the same. God is still supreme. Bathtime is still splashy. Stories are still adventures. And YOU still comfort them the best. Perhaps one of the best ways to honor your journey is to do the same, live one moment at a time, savor the gift of time, tuck away memories and gently remind you if you accidentally peek into tomorrow! For now, i'd say God is smiling all about you and giggling at the bedtime routine!

  12. Mindy you will be a writer someday. I can picture these things as you are describing them and it is beautiful. You have a gift for writing, among many, many other things. And as for bedtime routine, I think you are definitely on to something with the naked thing. It must be a 6th sense :)

  13. I know you don't know me, but I graduated with Leah Sauer (now Speciale). I am praying for Ben & your family every night. I fought my own battle with the 'big c' with the help of Roswell staff last yr. It is such a wonderful hospital & we are so very lucky to live as close as we do. I had a benefit last yr. in April & know how much work goes into a benefit. If you need any help with the benefit or anything at all, please don't hesitate to ask. I can't stop thinking about you & your family. Even my in-laws in Roch. are praying for Ben. The power of prayer is amazing & did wonders for me. We will continue to pray!

  14. I have never met you or your boys, but I have found myself thinking about him a lot and praying even more. I pray that this cancer melts away. I picture him on his pony smiling cancer free. I pray every day for him. I have a grandson a little older than Benjamin and I feel this deep connection as a mother and grandmother. I will continue to pray and I hope everyone that sees his story prays too. The more prayers the better. Miracles from prayer do happen and worth the attempt!

  15. I'm not sure how to work a comment on a blog, but I just want to let you know that I added Ben several weeks ago he continues in my prayer journal regularly. I know God is watching and will be with you both, Ben, and his brother and sister...helping in all the small ways we don't ask for. (we remember the big prayers..but He answers the small ones too) Thank you for giving people a place to support you on your journey and taking the time to let us know Ben's progress. Sincerely, Connie Rifenburg

  16. prayers from Pia O'Connor' Aunt Leslie...May God hold you close to His heart...


    I am so heart broken at what you and your family are going through...I have a son who has survived childhood cancer...but if it came back...(Leukemia) I would give Dr. Stanislaw Burzynski a try...he is in the state of Texas! He is a pioneer in the cure for cancer and the FDA has blocked his advances to cure our population and continues to block his advances...he does accept patients from serious forms and secondary forms of cancer...he has personally cured children of brain cancer... Burzynski personally put together seventy-two protocols to treat every type of cancer the clinic had treated and everything Burzynski wanted to treat in the is the phone # and address...Mailing address:
    Burzynski Clinic
    9432 Katy Freeway
    Houston, Texas 77055

    Phone: (713) 335-5697
    Toll-Free: 1 (800) 714-7181
    Fax: (713) 935-0649
    God Bless Ben and I Pray he gets the cure you all are praying for...I will keep the faith. Lot's of Love, and Respect, Elizabeth

  18. Published on Aug 28, 2013
    The remarkable story of Stanislaw Burzynski, MD, PhD who boldly challenged the Food and Drug Administration for his right to begin FDA-approved clinical trials on a breakthrough cancer treatment he developed.

    Burzynski, the Movie is an internationally award-winning documentary that tells the true story of a medical doctor and Ph.D biochemist named Dr. Stanislaw Burzynski who won the largest, and possibly the most convoluted and intriguing legal battle against the Food & Drug Administration in American history.

    His victorious battles with the United States government were centered around Dr. Burzynski's gene-targeted cancer medicines he discovered in the 1970's called Antineoplastons, which have currently completed Phase II FDA-supervised clinical trials in 2009 and has been given permission by the FDA to begin the final phase of FDA testing--randomized controlled clinical trials.

    When Antineoplastons are approved, it will mark the first time in history a single scientist, not a pharmaceutical company, will hold the exclusive patent and distribution rights on a paradigm-shifting medical breakthrough.

    Antineoplastons are responsible for curing some of the most incurable forms of terminal cancer. Various cancer survivors are presented in the film who chose these medicines instead of surgery, chemotherapy or radiation - with full disclosure of medical records to support their diagnosis and recovery - as well as systematic (non-anecdotal) FDA-supervised clinical trial data comparing Antineoplastons to other available treatments—which is published within the peer-reviewed medical literature.

    One form of cancer - diffuse, intrinsic, childhood brainstem glioma has never before been cured in any scientifically controlled clinical trial in the history of medicine. Antineoplastons hold the first cures in history - dozens of them.

    This documentary takes the audience through the treacherous, yet victorious, 14-year journey both Dr. Burzynski and his patients have had to endure in order to obtain FDA-approved clinical trials of Antineoplastons.

    Dr. Burzynski resides and practices medicine in Houston, Texas. He was able to initially produce and administer his discovery without FDA-approval from 1977-1995 because the state of Texas at this time did not require that Texas physicians be required to adhere to Federal law in this situation. This law has since been changed.

    As with anything that changes current-day paradigms, Burzynski's ability to successfully treat incurable cancer with such consistency has baffled the industry. Ironically, this fact had prompted numerous investigations by the Texas Medical Board, who relentlessly took Dr. Burzynski as high as the state supreme court in their failed attempt to halt his practices.

    Likewise, the Food and Drug Administration engaged in four Federal Grand Juries spanning over a decade attempting to indict Dr. Burzynski, all of which ended in no finding of fault on his behalf. Finally, Dr. Burzynski was indicted in their 5th Grand Jury in 1995, resulting in two federal trials and two sets of jurors finding him not guilty of any wrongdoing. If convicted, Dr. Burzynski would have faced a maximum of 290 years in a federal prison and $18.5 million in fines.

    However, what was revealed a few years after Dr. Burzynski won his freedom, helps to paint a more coherent picture regarding the true motivation of the United States government's relentless persecution of Stanislaw Burzynski, M.D., Ph.D.

    Note: When Antineoplastons are approved for public use, it will allow a single scientist to hold an exclusive right to manufacture and sell these medicines on the open market. Potentially leaving the pharmaceutical industry absent in profiting from the most effective gene-targeted cancer treatment the world has ever seen.

  19. Hey, this is Lisa Bevill, Tammy Jensen asked me to share what i had shared on her page about your son.. and it looks like someone else has posted the exact same thing about the Burzynski Clinic, but i'll post what i was going to say anyway..

    I don't know who personally knows this child and if this is shared multiple times.. but please, PLEASE tell this family about this clinic in Houston, TX. Dr. Stanislaw Burzynski, specializes in brain tumors especially in children. I've read everything i can about this man, because he is curing kids so fast with little to hardly any chemo and such, because he taylor makes a protocol especially for their body chemistry.. please tell them to at least call and ask.. what this Dr. has gone thru to prove himself, he has taken a lot of heat for not following chemo and radiation.. but does use cancer drugs.. If anyone in my family were to get cancer or brain tumors of any kind, this is where I would go... PLEASE, PLEASE check this out.. just a call to talk.. Here is link: