Wednesday, April 23, 2014

Praising Him in the Hallway

I took both of my daughters to the doctor for check-ups today.

That's right. BOTH of my daughters.


One of them is still in-utero, but I got a good peek at her via ultrasound! And let me tell you: she is just perfect.


Megan had her two-year well visit appointment scheduled for this morning. Ben has been holding his daddy hostage and under tight surveillance over the past few days, so I had a feeling he'd be alright with me being gone for a little bit. Meg looked so cute. Her little ringlet curls, pink bow, pink Crocs with a two-tone flower and her randomly matched (and self-chosen) outfit with polka dots and stripes. Pretty much as cute as a two-year-old could get.


We went into the exam room and it didn't take long for her to remember the shots she received last time. Amazingly, though, the nurse was able to record her statistics to report that she was right on track with her development.


There's something about going to the doctor now - even for a routine visit - that will never ever be the same. Not for me anyway. Hearing the words "normal" and "healthy" aren't just words on a check-off list. They are reasons to exhale. Be incredibly grateful. And still, very emotional.


It didn't all hit me until the nurse asked me to strip her down to her diaper and then offered me a hospital gown for her to wear to keep her warm until the doctor came in. Megan was interested in wearing the "dress" and as I started slipping her arms into the open slots, the tears flowed.


A hospital gown. My baby is wearing a hospital gown.


As much as our ten-day whirlwind experience with Ben at Children's Hospital seems like ages ago, it has only been more than two months. The wounds are still open. The emotions are still raw. I can still describe the smells we encountered, the dry taste in my mouth. There are visions that won't leave my mind. Episodes that replay in slow-motion in my memory. Seeing Megan in that tiny little hospital unexpectantly brought them all back.


The only thing harder was when the nurse came in with the needles. Meg would need a finger prick and a shot in her arm. I sat her down in my lap as the nurse prepped the supplies and told her what was coming. She understood. Her bottom lip curled under as she started saying, "All done? All done? All done!" She didn't need to be held down hard, but was anxious for when I'd say, "Meg, that's it. You're all done." I didn't cry in front of the nurse. But I wanted to.


I hadn't planned on her short visit being emotional. But I suppose that's just how it is, being 19 weeks pregnant and caring for a son with a (perhaps not to uncertain?) future.


Ben was still comfortable with his daddy when I returned, so I called my OB to see if they could take me for a check-up, last minute. How wonderful they've been, allowing me to call when I'm in the area or whenever I suspect it'd be a good day for me to be away for a bit. Such a blessing. This is the office where I first discovered my belly was housing two blessings. Over the past five years, I've shared the joy of that good news, the sadness of a miscarriage, the joyful birth of our Megan Joy and then the triumphant news of another strong heartbeat in Baby #4 earlier in January. They have been nothing but supportive, crying with me through Ben's diagnosis. And thankfully, they said I could come in an hour.


What a wonderful privilege, to be able to house and nurture one of God's greatest miracles. Seeing that little baby move, her legs tightly squeezed and her arms over her face, it is easy to be overcome with emotion. God did this. My God is a God of Life. A God of Miracles. And He delights in His creation. What a gift He has given, allowing me to be part of it.


There is no such thing as a "routine" visit anymore. We've always been grateful for good reports from our health care providers. My husband especially gets excited about the percentiles, learning how much our kids have grown since the last visit and how they compare with other kids on the bell curve. And even this new life that I'm carrying. It doesn't feel like I'm doing much to support her. But even through my exhaustion, my pain, God is nurturing and growing this life into a tiny human. What an honor. We've always been grateful. But our experience over the past few months makes us feel especially grateful. Unworthy. Humble. And reminds us never to take anything for granted.


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The past few days have been hard for Ben. Especially today. His back is so uncomfortable, with frequent back spasms making it very difficult for him to move at all. Andy and I have had numerous discussions about the steroids, the medicine that helps keep the swelling in his brain down. The majority of Ben's side effects right now appear to be a direct result of the steroids: back pain, muscle deterioration, dry mouth, and anxiety. We haven't heard him complain about his head in a really long time. Would it be possible to lessen the steroids, with the hopes that the side effects would subside, while still maintain the effectiveness of its purpose?


Andy talked with Ben's oncologist a few days ago, who gave us permission to experiment if we felt comfortable. As a medical professional, though, she couldn't explicitly recommend it. We had initially been prescribed a four-hour dosage schedule, but we had been extending it to six, sometimes seven hours without too much discomfort. We are currently administering slightly less as experimentation, seeing if it makes any difference at all. But I've got to be honest, I am very scared about him even hinting at a headache. Because those headaches aren't normal headaches (and this is coming from a girl who gets a pretty good one every once in a while.) Those headaches are mind-blowing. Literally.


This is unchartered territory. To be honest, I don't think anyone ever expected Ben to even live this long. If you saw that MRI, with the tumor tripling in size in a matter of just three weeks, you would have been surprised, too. When they said they expected him to survive a few weeks, they were thinking 2-3 weeks. There would have been no reason not to think that it wouldn't have continued to expand at that same aggressive rate.


Except it hasn't been three weeks. It's been more than seven. He is too scared to walk because of his back pain. But he has been eating, peeing, pooping, talking and remembering. As much as it doesn't look like the complete healing I've been praying for, that really is something of a miracle. The tumor, by all intents and purposes, should have taken over by now.


The steroids were prescribed to keep the swelling of the tumor down. To keep him comfortable. But as a result, he also has to deal with the weight gain in his face and trunk, the backpain, muscle weakness, etc. We are hoping that our dosage experiment might help alleviate some of his discomfort while still working to keep the swelling down. And the oncologist will be sending a physical therapist to the house to give us ideas on how to keep his muscles loose and flexible, plus the suggestion of a heating blanket and muscle relaxers to alleviate some pressure.


There are many possibilities still open, all of which we painstakingly consider daily. This is an awkward road that we have been asked to walk. Neither of us are healthcare professionals; we are just regular parents that want the best for our kids. We are praying for wisdom and are praying for God's best. We know that God will show us what to do when it is time. And that He will continue to give us enough grace for every single day, one day at a time.


For the immediate future, our goal is to continue offering Ben "Fatter Spatter" silly string, provide a colorful menu that satisfies his cravings (that are worse than a pregnant woman's cravings, by the way,) and watch his siblings explode in laughter when he says "poopies" as much as his little heart desires. It is very difficult to live day-by-day. As if every week could be our last together. It's exhausting. Draining. But we know that our time is precious. And every moment that we're able to keep Ben comfortable at home, in the presence of his most trusted family members, is a really really good thing.


I remember seeing a picture passed around Facebook a while back that has been on my mind a lot lately.

"Until God opens the next door for you, praise Him in the hallway."
Unknown

And that is precisely what we plan to do. Because He really has been so good to us. Much more than we deserve.



38 comments:

  1. Oh Min... my heart aches for you all! Praying for wisdom and peace and many more happy moments <3

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  2. Trust your intuition on Ben's care, Mindy. It will not steer you wrong.

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  3. Although we've never met, I have fallen in love with your family and I continue to pray for you all. I am thankful for your blogs, your faith is amazing! Many blessings!

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    1. You hit the nail on the head with this comment! I love this family too. Reading this blog makes my heart ache just as it would for my own family. My god bless them all through this journey.

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    2. Yes! It is truly love I feel for the beautiful heart of this mother and the equally beautiful hearts of her family. And Ben...always in my mind and in my heart. God bless and continue to hold them.

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  4. I feel the same way, Karla. I check for updates every day, and my heart just aches for Mindy as a mother. I am amazed at what God has done through such a tough situation.

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  5. Mindy, trust your gut when it comes to experimenting with his medicine. I can't even imagine what a difficult decision that has to be--knowing the possible pros and cons that can come with fluctuating his medicines. But, trust yourselves. You're Ben's parents and God entrusted him to you both. Do whatever you feel will be best for your son. And don't second guess it. Doctors can only take you so far--and I'm praying that whatever happens in the near future with Ben, that God always holds your son tight in His arms and that your heavenly reward for being chosen to walk this path will be beyond your wildest imagination. I am continuing to pray for you, your family, Bens siblings and no pain for your sweet Ben.

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  6. Mindy,
    I must echo Karla's comment. Not a day goes by that I don't think and pray for little Ben. Every time I check my Facebook news feed, I find myself scrolling to see if you have a new blog, with updates about you, the family and little Ben. Your strength and courage continue to inspire me to give thanks for all that God has blessed my life with and to let go of my aches and complaints.

    I've told you before that I think of all my 12 grandchildren and the joy they bring me, but my 4-year old Daniel is front and center as I can't help but relate him to Ben. I babysit for him and his little brother on Mondays, and when I listen to him tell me his stories i sometimes have to swallow the lump that comes to my throat as I think about him and then Ben. I wish the love that everyone has for your little boy could heal him; yet, knowing how much faith has carried you through this journey, I know you will all be fine, no matter the outcome.

    My nightly prayers include Ben and will continue to - God bless you now and always.

    Rosemarie

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  7. Praying for Ben's healing. And for the rest of your family as well.

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  8. Mindy, praying for you and your family for weeks now. I am married to a twin and have two little boys which are little common ties we share. The greatest bond is being sisters in the Lord. My friend, Erin Lawlis-Rohrer had a post of Ben on FB when you started your blog. I've wanted to write many times just to let you know I pray for you, Andy and the kids daily and sometime hourly. Our soon to be 3 year old, Micah knows Ben by his picture and prays for the boo boo on his head. Glad to hear about the great reports at the doctor and thinking of the hymn How Deep the Fathers Love for Us....knowing he loves us in a way we can't imagine. Praying for you and strength for each day.

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  9. I know you probably get many people with advice. So I want be adding anything terribly new. I (like millions of others) have been on steroids for my chronic disease, and live with the pumpkin face, the unwieldy upper body weight, the muscle spasms, weakness, and the appetite of an elephant!

    Sometimes the anxiety of all these strange things happening to your body is crazy for adults, much less a child. What I would once laugh at, I now could take as an insult, or cry at a commercial, or anger in a moment...all because of this medication.

    Experimenting with his dosage is touchy, but I do it with my dr's knowledge and trust built over many years of knowing how steroids affect "me". That's the key I see for you and your husband. Watch and listen to Ben for hints that he is having more/less/same pain. Possibly, having "flash" cards with numbers 1-10, might be a way for him to tell you what he feels like on a scale from 1-10.

    When everything hurts, sometimes it's hard to decide how to tell someone when they ask. Asking for a specific number on a pain scale is easier for him to hold up a card to tell you that RIGHT NOW (and it can change from moment to moment) "my pain is..."

    A heating pad or those refreezable soft ice packs are gifts from above. Laying on a heating pad for 20min.on; off for 20 min. (maybe adjust for child) and same with cold, has helped me with muscle spasms. Quinine water can help also, but it doesn't taste so good (Tonic water... like the old gin and tonic [without the gin] is actually quinine water).But it can quiet muscle spasms.

    A massage from a well trained masseuse. Having Ben, lay on his tummy and take his shirt off and down to his undies, then let the masseuse gently massage his back, it might relax him more than you think. It's wonderful, but have him drink lots of fluids after since it looses toxins from the tight muscles when they get relaxed. I'll bet you could find a volunteer masseuse to help, by asking on this site.

    Don't be afraid to try warm baths, really warm showers, hot/warm washcloths on those muscles. Even the ones he may not realize are tight. Muscles in his back can make his neck hurt and vis a vis.

    I am only passing along things that have helped me over the years of dealing with high doses of steroids and their side effects. But I bless God every day - even the bad ones - for this drug that makes the difference between getting out of bed and walking with a cane/walker or laying in bed in terrible pain.

    I cut pills in half, I alternate ...say 3 mg one day; 7 mg the next, so that I get an "average" dosage, but not a FULL dosage. If it still keeps Ben comfortable go down a little more. The dr. told me it's not so much the dosage when you go down on steroids but it's the percent of the corticosteroid in your body. i.e. going from 100 to 50mg seems a big drop. But it effects me more to go from 10mg to 9mg. It is how much of it is in my body that I feel pain or not.

    Please feel free to ignore all or any of what I've said and certainly to verify and check any of the ideas I've suggested with Ben's Dr. It's hard to try and compare a 60+ woman to a 4 yr old boy...but I was grateful for the trust my dr. and I had allowing me to try changing my meds according to what I could tolerate.

    God bless you Mindy. Send good and positive thoughts to that new little girl inside who doesn't know her brother is sick right now, but feels the stress in your body. Tell her why you're stressed. Sometimes saying the thing that is bothering us out loud, helps to relieve the tension we hold inside.

    And most of all, Lean on our loving Father for His strength is everlasting and can hold the heaviest of burdens with ease.
    Prayers uplifting your family today and ongoing...

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    1. Thank you, Connie, for taking the time to share your experience with me. It is all very helpful to hear from someone who experiences these challenges while depending on a medication to keep other symptoms quiet. I will take your advice to heart. Thank you. And may God continue to bless you and your family!

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    2. I wonder if an Epsom Salt bath might help with the muscle pain, also.

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  10. Hi Mindy. My name is Katrina galla allen. I just read your post. I am a nys licensed massage therapist for 16 yrs. I would love to donate any time to work on and massage ben. I love the Lord, I work with children (& adults) who are waiting on their healing! I do know your,I think it would be cousin, Lisa sauer, you could ask about me. If interested, please don't hesitate to email or call. it would be an honor to massage and pray over ben. We are standing and believing God for this continual miracle of life and comfort for your boy. My cell# 716 983 3608 and e mail kattwoman357@yahoo.com. God Bless you and your family.

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  11. Mindy, as a fellow Houghtonite ('01 Elem. Ed), a newish mom, and a former prescription steroid user for months on end, play with the dosage. If you can minimize the side effects and get the benefits you all will be more comfortable. I was on steroids for 4 months immediately following my son's birth and it was really hard to manage the side effects of the drugs and all of the post partum ups and downs at the same time, some days I was more successful than others. My Bible Study group and I have been praying for you, Ben and the whole family for months now, from all the way out in Iowa and we will continue to do so.

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  12. mindy and family .. you are all in my thoughts everyday i feel so attached to ben and i hope and pray that you all get a miracle .. i hope ben has no pain and he smiles that bright smile always and may god bless you all...debi xoxox

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  13. God will show you the way. Praying for Ben every day.

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  14. My new dress has this great slit so people can see those ever expensive shoes that we girls love so much. Beautiful quality material and the price is phenomenal. Thank you so much.
    wedding dresses used

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  15. Mindy, you have changed my life! I have had a prioritization of so much in my life due to your struggle. I have fallen in love with Ben and your family. I used to work with Ellie and she's just a fantastic exuberant person. As a steroid user for migraines they are a blessing and a curse. Prayers that you find the right solution for Ben. We have 8 trees that line our front yard, all wrapped in blue bows, and yesterday a blue bird landed in our blue Ben tree..I took it as a good sign!! I talk about Ben so much that a friend of mine who owns a local pottery studio thought I knew you personally called me to see if I had your contact info. If she hasn't contacted you already she would like to offer your family the opportunity to make handprints/imprints. Daily, if not multiple daily prayers are Said for all of you!

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  16. We continue to pray from Canada. May you feel the tangible arms of the Lord continue to carry you, hold you and assure you that He is in control. Sending love and our assurance of prayer support from Manitoba, Canada.
    Joy

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  17. Praying a very good Dr. see's something that could help this poor baby.God bless Ben and his family.Sending prayers !!!

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  18. Mindy, when I read your words "The wounds are still open. The emotions are still raw. I can still describe the smells we encountered, the dry taste in my mouth. There are visions that won't leave my mind. Episodes that replay in slow-motion in my memory."
    I thought of my son Michael who would be 32 today. Those memories, those knots in my stomach, the hospital smells, the unrealness of sick baby came flooding back. But those times (even in the midst of constant uncertainty) where the times I was the closest to God , times when I could almost see His face and feel His presence.
    I, like everyone here, check for your posts numerous times through the day and pray constantly for you, Ben and your family.

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  19. Psalm 119:169-176 "Let my cry come before You, Oh Lord; Give me understanding according to Your Word. Let my supplication come before You; Deliver me according to Your Word. My lips shall utter praise, For You teach me Your statutes. My tongue shall speak of Your Word, For all Your commandments are righteousness. Let Your hand become my help, For I have chosen Your precepts. I long for Your salvation, O Lord, and Your law is my delight. Let my soul live, and it shall praise You; and let Your judgements help me. I have gone astray like a lost sheep; seek Your servant, for I do not forget Your commandments."
    May God's Word always bring you Joy, Comfort & Power

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    1. So very beautified are these words. Thank you

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  20. I will continue to pray that the moments are blessed with love & that GOD finds you all comfort in which ever way is his. My heart loves your whole family so very much, still will hope & pray for best outcome.

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  21. We are praying for you every day, every hour. Thank you for writing again. We love you, and do not even know you. I will remember the "hallway" thing. We are in one of our own, and praising every minute.

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  22. You may not be medical professionals with certificates on paper, but you are parents with enough experience to give you all you need. Just listen to your inner voice and parental instincts and you'll figure out what works. Still praying for you!

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  23. Love your heart! Praying for miracles for Ben.

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  24. My family & I continue to pray for Ben everyday. I will now pray to Our Lord to give you the wisdom & knowledge to know how to adjust Ben's medication. You are an amazing mom, under a lot of stress. I pray for you also Mindy. Along with Andy & your family. Ben has so many people who love him but never met him. God Bless all of you & I also pray for peace of mind for you & Andy. ��������

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  25. Mindy, I pray continually for you all. I have decided to not take off my Blue4Ben bracelet...as it is a constant reminder of the need for prayer. I need to say I am in AWE of your blog. Your words touch my heart and are a constant reminder that our children are entrusted to us to love and nurture, but that they truly do not "belong" to us. You share your heart with so many of us strangers, though we are truly, brothers and sisters in Christ. Please know that as you go through each moment and you share your thoughts and prayers that you are ministering to all of us. May God continue His Grace upon you and your beautiful family each waking moment. <3

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  26. Thank you for sharing your journey with us, Mindy. We are united in prayer with you.

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  27. I am always here reading and thinking of you. Take care of that precious boy and the rest of your precious family, while continuing to take care of yourself and that new life you are carrying.
    I would like to share with you another blog I follow, of a mother who lost her child to a similar aggressive tumor in February. She has a post about tumor donation, that she did with her daughters tumor to help the fight. Not sure if you would consider it or if you've even been thinking about it, but thought the info might be helpful as we need to find a cure somehow! Of course I hope you never have to do it and Ben somehow becomes the miracle we've all been hoping for!

    The page is Love4JLK, I hope this link works:
    http://love4jlk.org/?p=1473

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  28. We pray for you every day. My daughter is Ben's age, and each night we think of him and pray for him as well as for you all. Your blog is such a testament to God's goodness. I know that He is using you in the blog to affect so many people's lives. I want to personally thank you for all of your writings, encouraging me in my walk in The Lord, and teaching me to value each moment. Much love.

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  29. You are a wonderful example of praising in the storm. Thank you for sharing your journey. I know it helps you, but you also help others.

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  30. Continuing thoughts and prayers for Ben and your whole family, Mindy. Thank you for allowing us to take this walk with you all... You've blessed so many!

    May your heart and soul find the peace of God's love.

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  31. I didn't read a lot of this but I go to church in western ny and someone close to me had a word from God for you and your son....message me on my fb Marilyn Willhoff

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  32. cont. they tried to get it to you but the person or people or Pastors may have not believed it or maybe you already received it......

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