Sunday, April 13, 2014

Parenting is Not for the Faint of Heart

Whoever said parenting was easy should be imprisoned. For life.

Just kidding. I'm pretty sure no one has ever - ever - said that parenting was a walk in the park.

It's tough, selfless work.

There are no medals. No awards. No way of knowing if you're doing it "right."

Every mom - from the moment she conceives new life inside of her - is entrusted with a gift. A miracle. A huge responsibility. And that responsibility takes a huge toll on her body, her emotions, and therefore, everyone around her. I meant that to be sort of funny; but as a pregnant woman with raging hormones, I feel pretty safe in saying that my husband may be in really big trouble if he were to admit that my emotions affected everyone around me! HA! As that new life continues to grow, you realize just how little control you now have over your body. It's as if the Lord uses that time to prepare you for that little one's life outside of the womb.

When they're born, you're a slave to their schedule. Eating, sleeping, and showering are now considered luxuries. A good day is one where you remember to brush your teeth. The books you read now are about how to get your baby to sleep through the night, making your own baby food and which diapering method will work best for your family. Your mind is consumed with questions of doubt. Am I doing this right? What am I doing wrong? And many times, the more experienced mothers around you are all too quick in giving unsolicited advice. It. Is. Tough.

The challenges change as the kids grow. And perhaps the second and third children have it a bit easier as the parents have learned to relax and have a better gage of which things they can let go. But the challenges don't go away - they simple change. I've only been parenting for about five years now and I am pretty confident in saying that there's a whole lot more that I don't know than I do.

But the past few days have been especially draining. Exhausting. Literally sucking the life right out of us.

Caring for a sick little one is no joke. Ben is so helpless these days. He cannot sit up, walk, or stand. He needs our assistance to change his body position on the couch. To reach his cup of milk. To scratch the itch on his back. He leans to the side in order to pee in a urinal and thankfully, will struggle through being carried and held on the toilet long enough for him to try and pass a bowel movement. Add these frustrations to his overwhelming sense of anxiety which won't let us out of his sight - not even into the other room for longer than fifteen seconds - and you have a recipe for frustration. Many of you that have cared for older patients in Hospice might understand how difficult it is trying to assist someone who is irritable. And let me tell you. That boy is plain irritable.

You're talking too loud. He can hear his brother playing too loud in the other room. You were gone for 'too many minutes.' You didn't understand what he said. Jack kicked his pillow. Megan touched his couch. You brought him pasta when he asked for pizza. And for the record, he did ask for pasta; he just confused the words - which he often does - and was annoyed with your inability to read his mind correctly.

I'm sure Ben is annoyed that he cannot do any of these things himself. He doesn't complain directly. I'm sure that he's uncomfortable. But rather than being able to voice those feelings - especially when his speech takes so much effort - he just lashes out. He cries easily. Yells when you can't understand what he's trying to say.

Andy and I try and tag-team during the day, mostly to give the other person an emotional break.

We remind ourselves that this is not Ben talking. It's the steroids. This is not our Ben. It's the cancer.
 
Even then, it's tough. The weather has been beautiful and so we try and give Jack and Megan as many opportunities as we can to play outside. Ben gets anxious about them not being in the house where he can't see them, much less the parent that is out there enjoying it with them. It is obvious that Ben is most comfortable when all five of us are in the house, awake and in the living room alongside him. We try and get Jack out of the house while Ben is napping, but have to adjust quickly when he wakes up. It's just not worth the frustration.
 
Perhaps it's the fact that he is so out of control. There are very few things that a little boy can do who is merely being transferred from his bed, to the couch, to the toilet and back everyday. But he wants to be able to manipulate the four other people closest to him. To keep them close. And not let them too far away from his sight. I suppose I would be the same way. I would want my family around me, too.
 
I don't mean to complain. I'm just really really tired.
 
I feel like I'm back to those days of mothering a newborn. Or two. Feeling so exhausted and yet knowing that no one else can tangibly do what you're required to do. Knowing that you're probably doing something wrong, but you're so consumed with caring for your child moment-by-moment that you don't have enough energy to think about what it is you're doing wrong. Receiving a plethora of advice from well-meaning people who just make you feel even more miserable for not jumping on their bandwagon and trying their new magic and under-researched formula for healing.
 
It. Is. Tough.
 
But... God.
 
I am reminded of the fact that God has gone before us on this journey. That He will go after us into the future. And He has - and will continue to - walk alongside us all along the way.
 
My mind wanders to those first few days we spent in the ICU at Children's Hospital at the beginning of February. We had received a beautiful crocheted blanket upon being admitted. It was a camo-colored blanket, large enough to cover Ben's whole body. It was a beautiful gift. A comforting gift. We knew the many hours that had gone into making it. And from a woman that would probably never meet the beautiful little boy that received it.
 
Two months before, the women in my Bible study made blankets to donate to two area hospitals for distribution to needy families. One of the fleece blankets I made was a light blue and had rubber duckies; the other was a pink one with flowers.. I never would have thought that I might be on the receiving end of one of these gifts. Never. After receiving this one for my four-year-old, I wondered which families might have received the blankets I had made. As I laid over my sick child, I prayed for the kids that would receive the blankets I had made. For the devastating news they might have received, the journey that they may have been called to walk. And I prayed that they would have also been comforted by this gift from a stranger they would never meet.
 
After Ben had his first MRI, we were transferred to the ninth floor so he could begin his healing process while he waited for surgery. Next to Ben's room was a little boy who was usually alone. He was about eighteen months old and I'm assuming his family was out of town or worked full-time and were unable to physically be there everyday. I passed by that boy's room one day and stopped. I jerked Andy's arm back and made him look into the room, too. In his crib was a pale blue fleece blanket with rubber duckies. It looked exactly like the one I had made at Bible study two months before.
 
That was the blanket I had made. God not only had it delivered to that particular hospital, but also to the room next to where my son was admitted. That was not by chance, friends. That was by God's divine appointment.
 
I felt like God had allowed me to see that so I would know: God had gone ahead of me. He knew that we would be there. This did not come as a surprised to Him. And this thoughtful God would not abandon us in our time of need.
 
I thought about that story tonight as I could feel the end of my rope dangling at the bottoms of my feet. God has gone ahead of us. And He will go after us. None of this is a surprise to God.
 
We weren't asked to take on the whole journey at once. We were asked to take one step at a time, asking for enough grace just to get us through each day. That's it.
 
Whether we're parenting a newborn, managing a fussy child or assisting our elderly parents as they navigate through their final days on earth... we only need enough grace to get us through one day at a time.
 
One day at a time. One hour at a time. One minute at a time.
 
Thank God. His grace is sufficient.

92 comments:

  1. Amen. His grace IS sufficient. Continuing to pray for strength for you all. Your story continues to touch my heart, and I will continue to pray for God's peace and arms to be felt tangibly along this journey. May you feel the prayers of those who are lifting you before the throne often. In His love, Joy, Manitoba, Canada.

    ReplyDelete
  2. Again, you're an amazing writer.....I feel every emotion with every word....

    ReplyDelete
  3. You are strong and courageous and most of all, human. I cannot even fathom how it must feel to be in your shoes. I wish there were some way to take some of your fatigue, pain and restlessness away. Surely, you must be chosen as one of God's faithful and humble servants. God bless you - my prayers are for you tonight, Mindy.

    ReplyDelete
  4. Praying for you. I am unemployed, broke and on the verge of being homeless. But God. I needed to read this tonight. Thank you.

    ReplyDelete
    Replies
    1. I will pray for you as well, as I have been there once and by the grace of God, he pulled me through it. You will get what you need, just keep your faith in Him.

      Delete
    2. As for you Robin, unemployed and in the need of a place. I have been there to. I was living at my mother`s and looking for a place. Plus I owed my sweet mother money. How do you pay rent and her to. But God! I had no idea. His ways are higher. Where my mother got her hair done, another lady said, can anybody help me with my mom who is in her 90`s.? Well my mom came home and told me that one. I went to meet them at 8;30 in the morning. fast forwarding. After helping them for 3 wks 4 days a wk. They said, where are you living, my mother likes you and she has two bedrooms and two bathrooms. I moved out of my parents and moved in there which was Lockport. I did not have to pay no rent or anything and they paid me 185.00 a wk to ! But that was in 2005 for a year and a half.I also had another in 2011 a live-in. They paid me 250.00 a wk, I will pray for you that God will make your crooked places straight and open up a door that no man can shut. Also supply all your needs in Christ. Exceedingly abundantly above all we can ask or think. Ephesians 3;20 Also that God will bless you a thousand times as he has promised. Deuteronomy 1;11. Also it sounds like Mindy could use some help. I wonder if she has the extra room to put you up. I`m commanding the hand of the Lord on this that all your needs will be meet. In Jesus Name A-men. So be it.

      Delete
  5. God bless you! Sending love and prayers from our family to yours <3 hugging my girl a little tighter tonight. One day at a time.... <3

    ReplyDelete
  6. I cannot imagine what you are all going through right now, it would be hard enough without the symtoms that come with pregnacy and how very tired that alone can make you feel. Ben must be so scared as well, not totally understanding all of the strange changes that are happening to his body. I hope that God continues to give you the strength and grace that you will need

    ReplyDelete
  7. Words cannot express the complete admiration I have for you. Pray...just pray for the right answer...and I will too

    ReplyDelete
  8. Praying regularly for your family and for Ben's comfort. Praying that you will feel the Lord's arms wrapped around you as you walk this path.

    ReplyDelete
  9. I stare at this box where I am supposed to post my comment. I can't even begin to put my thoughts into words. Your posts move me. Immensely. That being said, I will give my time and my words to Him. For you. For Ben. For your family.

    ReplyDelete
  10. I prayed for Ben and your family at church today. I wrote his name on an origami flower to be hung around our altar at church this Easter. Praying for a miracle.

    ReplyDelete
  11. Mindy tonight Im saying a final goodnight to my best friend and feeling so overwhelmed with what God thinks I can handle. My first thought as I laid down tonight was to check on your family and brave little Ben, while drawing strength and inspiration from your words, and in return (albeit a tiny return) offer my strength to you. Our God is good, so good and so in control. Even while we are suffering beyond belief and exhausted beyond measure, our God is in control, He knows e.x.a.c.t.l.y what He is doing, and will see us through it all. You are an incredible, inspiring Mama, whom our Lord has given a beautiful message and strength.

    ReplyDelete
  12. You are doing nothing wrong. Praying for all of you.

    ReplyDelete
  13. I am praying for you, your family, and your sweet son, Ben - for your strength and his healing. Your faith is such an amazing testament to God's love and work in your life, for who could walk this road in such a way but someone who really does LOVE God and His Son more than life?
    Your words are powerful and brave and such a blessing to God's glory and His grace. Thank you again for sharing. Soli Deo Gloria...

    ReplyDelete
  14. What an incredible story of the ways God reminds us that he is with us (the blue blanket)-- so beautiful, and poignant and full of truth. May God continue to pour out his blessing upon you and Andy as you care for all of your children and especially Ben. I pray that he continue to give you the energy and the strength for all of the tasks that are before you. I pray that you would sleep deeply when you can, and that it would be somehow restorative in the midst of such hard circumstances. Thank you for continuing to share your story...I too pray that you would feel the prayers of all of those that are lifting you up.

    ReplyDelete
  15. may His divine grace continue to embrace you dear lady <3

    ReplyDelete
  16. An amazing story of the blanket. I empathize with you as you relay your sadness, frustrations, anxiety, and enduring love. I am a hospice nurse in Niagara county and yes, so many families feel all of the feelings you present. My patients are not children as I am not sure I could be as effective. I am emotional enough with the adults. Prayers to you and your entire family. Ben is a very special little boy from all you have shared. Thank you for sharing your heart so freely.

    ReplyDelete
  17. Thank you, this is just the nourishment I needed to face another week as a healthcare worker for end of life care patients....and I know I will think on this post often. His Grace is sufficient. Thank you for reminding me.

    Your sister in Christ. <3

    ReplyDelete
  18. With every beautiful writing you post Mindy, my faith, love and trust in God grows deeper and deeper. I am so thankful that He is working through you to send beautiful messages and lessons to us. Thank you and thank God! Your sweet Ben is always on my mind. I check everyday for an update. I KNOW how exhausted you are. I had my husband home on hospice care for 4 months and it was OH so tiring. I am so thankful to God for letting me take care of my husband and to be able to experience the beautiful transition from this earth...back home to Him. Tonight I pray for you and Andy. For a good night's rest and for peace and comfort in knowing that you have so many people that love your family so much and are praying for you. Let us help carry some of your burden, through Jesus Christ Our Savior. So much love to you and your amazing family. Kelly <3

    ReplyDelete
  19. Beautifully written...you need to write a book. You are a story-teller in your writtings where you paint a picture understood by all.

    ReplyDelete
  20. Praying for you all....and for your Ben who is needing to be in control....in his little world....at this time.

    ReplyDelete
  21. My 28 year old daughter is exactly where Ben is. She can no longer walk, has lost all function of her right side, speech is extremely difficult, her sight is going, she is extremely irritable, on massive amounts of steroids, and extremely constipated. I had to leave my husband and 11 year old back in Oregon to come to California to care for her and her son. I have been away from home since February 1st. Parenting doesn't ever get easier. They are ALWAYS our babies. Only now my baby has a baby so both need taking care of. My heart knows your heart. I cry for you and I cry for me and I cry for Ben's siblings and for my grandson who may soon be without his mommy. I cry for all those affected by this horrible cancer. I too know first hand that God goes before us, He sets things in place, puts certain people in our path for reasons we don't see at first. You are not alone. We are in this together. We are not the only mothers that feel this. God has brought us together to comfort one another. Your family is and will ALWAYS be in our prayers.

    ReplyDelete
    Replies
    1. Prayers for your family and your daughter and her son, as well. May He uphold you with His right hand. God bless you!

      Delete
    2. I will pray for you and your daughter and grandson as well. May God give you strength and grant you peace in what is undoubtedly one of the hardest and most emotional times in your life. As a young(ish) mother, I am thankful for your gift to your daughter, who I am certain could have never envisioned needing you in such a way. God bless you.

      Delete
    3. By the Authority of the Risen Son of the Redeeming God we rebuke this brain cancer and we command it to dry up at the root and be no more in Jesus Mighty Name. We command healing in your brain and command it to be tbe way God created it to be. Healed and whole in Jesus Name. A-men. So be it.

      Delete
  22. Mind,, I have been praying for you and Ben, mostly you, as I have buried 7 of my 8 children. I know what your going through and my heart breaks for you. No one truly understands until they live thru it. I am a friend of Dan and Lydia and read your blog. If there is anything I can do for you, please let me know. Talking and yelling at God a great deal with the emotions I was feeling. May God watch over and keep your family in his care. God bless all of you. Bert

    ReplyDelete
  23. As a mom of two young children, it is unimaginable what you and your family are going through! I am honored to be able to read your story. The way you use the words God gives you makes it feel as though I know you personally. Funny how that works. Obviously I don't, but know that God is using you in ways you can't even imagine! My heart hurts for you. There is such a desire to be able to do something tangible for you. To relieve some of the burden. God is using prayer by the thousands of people following your story to do tangible things in your hearts and lives. It's obvious. His glory is shining through! Thank you for allowing HIM to use YOU. BUT GOD! He is in the midst of this. His fingerprints are all over this. Thank you for being used!

    ReplyDelete
    Replies
    1. mindy .. as i read your posts it gives me a whole new outlook on god you have opened up and inspired so many people with the everyday struggle with ben and your family.. you write just beautifully god bless you all .. debi

      Delete
  24. I agree with what everyone else said, but also... thank you for your candor. For admitting that your life is frustrating and draining right now. I feel that many people would try to gloss it over and pretend all is perfect. You express yourself so beautifully and honestly, and I'm sure your honesty is helping so many others who are also facing stress and grief. You just keep doing what you're doing, and know that hundreds if not thousands of people have your back.

    ReplyDelete
  25. Hugs! I have been in an emotional coma for weeks now...lost my dad, a healthy 52 year old man a couple weeks ago..It was sudden, shocking, and devastating as he was my children's (boys 4 and 6) papa, hero, and best friend. Even furthermore, it began as a sinus infection...
    Writing can be used not only to help you express your feelings, but God can use you to help meet others where they are at...that in fact is very clear to me...you have a gift and the fact that you can put words in a blog while going through the trenches is honorary and commendable....
    I have learned, even more so, after this loss, to take every sec as it comes, asking God only for what I need in every moment, the brevity of life can be both shocking and devastating, but we have a GREATER HOPE IN HIM..
    We must continue to exercise our FAITH and remember, HE is all we NEED.
    Your family is beautiful and precious....my father video-recorded all of his time with my boys(he watched them all the time as he lived 4 minutes down the road..I would leave for work and he would begin his recording...he always began with a prayer...it was mind-blowing to me as he had more footage of the precious milestones of my boys than I had and I did not know until after he passed that he had all of these videos)
    If I can offer any advice, record Ben....even his bad days....now that I watch them daily, it puts a smile on my face and brightens my day :)
    Sending you Love and Prayers,
    Kristi Perillo-Okeke

    ReplyDelete
  26. I'm so sorry that you are all going through this. As others have said, you are a great writer. This is probably an emotional outlet for you. Please know we are all praying for Ben and the rest of you. Your strength in God is inspiring. We have prayed for you at our men's bible study group and will continue too.
    Steve

    ReplyDelete
  27. How can I find the right words to say to you, that what you're feeling is so understandable? I'm on the outside looking in, but know a little more about how Ben is feeling right now. Those steroids are stirring him into not only the boy YOU don't know, but the boy HE doesn't recognize. When he yells or complains or feels hungry just after he's eaten a big meal, or fidgety when he's really tired,.. He doesn't understand why. And those weak muscles, oh they're not only weak, Mindy, they feel like you just ran a marathon at times because the tendons flex when they want to, and tighten when they aren't supposed to, so that your hands/fingers can't handle detailed things like holding a book open, or a crayon to color or even to pull the blanket up and over yourself.

    Steroids can be miraculous & heaven sent, and at the same time, create a hell in our minds and body that is so hard for even an adult to understand, much less, a 4 yr old. I tell you this, wanting you to understand a little more about what drives Ben's erratic and unseemly behavior, because I know, I've taken steroids for the past 12 years in doses that were extremely high at times, and have felt those feelings you're describing about Ben, only from Ben's side!

    I want to scream at anything that moves, just because. And then I ask myself why are you feeling this way, and then I cry because I don't feel good, and I am angry because I'm out of control and I've hurt someone I love's feelings. But most of all, I just don't understand how a single medicine can do all these things to my mind and body in a short time, and yet, without them, I am in horrible pain, unable to interact with the world around me at all. So what is my choice?

    I'm a grown adult, I understand the logic behind what is happening and yet, still, feel guilt and shame at what this drug has done to my body, my appearance, my personality. Add in narcotic pain killers and you boggle the mind even a bit more. So now, even when I want to be in control, I "forget" to. And the vicious cycle repeats itself.

    Inside that angry, demanding little body, is the sweet tempered, funny, laughing little boy called Ben, and I urge you to look at his little pudgy face when it's twisted with anger or pain, and envision that picture you have posted on this website.

    I know that this is how God sees him, and through our human eyes, bring his loving soul to the front of your vision, and speak sweet, temperate answers to the person that God is looking at too.

    It will be one of the most difficult parts in this play of life that you will perform, but you can do it with God's grace Mindy.

    The lessons we all learn from Ben about the things that have changed his outward appearance - his approach to situations, his personality, should be taken to heart when we meet the elderly, who may be struggling against those same conflicts and need the patience of a "mommy" to comfort and love them through their worst!

    With God's grace and love Mindy, I know that you will give Ben what he is searching for and may not even know himself, if you'll listen past the side effects of steroids.
    with sincere affection,
    Connie Rifenburg in FL

    ReplyDelete
  28. Mindy, when I get overwhelmed, I remember the essence: Jesus is coming back, and I believe He is coming back soon. And it gives me strength to keep on and to look forward. This is not our home, and He will be coming soon to take us all to the home He prepared. And this suffering will not even be a memory, for you or for your sweet Ben. I am praying for all of you. Come, Lord Jesus.

    ReplyDelete
    Replies
    1. Amen, Kathy...amen & amen.
      Mindy, sending love...and prayers...and love.

      Delete
  29. Amen and amen! May His grace continue to uphold you every step of the way.

    ReplyDelete
  30. Praying God will give you the strength you need, moment by moment!

    ReplyDelete
  31. As I sit and read your blog post, I am crying... im a mommy to 5 healthy children and I thank God every day for them. I burried my 4th born baby at just 1 day old... all I keep telling myself is God hada better plan for him. My continous prayers are with you not only for Bens healing but for strength for you and andy and peace of understanding for jack and megan. GOD IS IN CONTROL!!!!!

    ReplyDelete
  32. Praying for strength from God for every moment.

    ReplyDelete
  33. Praying for y'all everyday. Came across this verse and thought of you. "For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal." 2Corinthians4:17-18. Your troubles are not light but I pray you can fix your eyes on what is unseen and that God will continue to cover you in His grace. Praying for new mercies in the morning. Love and prayers from Alabama.

    ReplyDelete
  34. Well dear mindy, when you find that person who said parenting was easy I'm sure there's more than a few moms that would like to have a talk with him/ her.. lol! I had a day not too long ago where I actually went and hid, in the bathtub with the shower curtain shut as crazy as it may sound I sat in that tub with a cup of coffe and my iPad and it was QUIET and I thought to myself how great of a hiding spot this was... For years I always thought that mothers couldn't have a mini breakdown, but having 3 it's happened and I then collected my thoughts and went on :) my thoughts and prayers are with you and your family and that sweet little Ben <3

    ReplyDelete
  35. I read your entries, but never leave a message. But tonight, God touched my heart and I wanted to tell you something. I feel the love you have for our God, your family, and especially your children.

    I too held the hand and walked through the journey of GLIOBLASTOMA with someone; with my dear mother. I remember the hard days, the irritable days. The days she wanted a book and couldn't get the word 'book' out of her mouth. I truly feel for you, for sweet Ben, for you all. Know that others have walked this path before and you are not alone. You are walking with God's grace and I am praying for you.

    ReplyDelete
  36. God bless you and your family. I love you Ben.

    ReplyDelete
  37. I am the mommy to a newborn son. He was born at 30 weeks and will have chronic kidney and bladder problems for the rest of his life. He is two months old now. I have been reading your blog for weeks and it gives me strength as a new mom. Especially as a new mom to a sick baby boy. I pray for and think about your family all the time. My son will have his challenges is life but I think he is perfect and I feel beyond blessed to have this gift from god in my arms everyday. I don't know why God has chosen my baby boy to have a life of health problems but I know he is going to live as happy a life as possible. And just like you I will never ask why but will always thank god for the blessing that is my beautiful boy. Thank you for your strength. And I am so happy for your family that you have a baby girl on the way. What an incredible blessing.

    ReplyDelete
  38. I sat on my front porch to read this after work tonight, I prayed for all of you, GOD will help you all get through this. As I read, I thought about all the little things that are taken for granted in life as we go. No, there is no manual on how to parent, it is a learning process for all. I do believe that GOD does help us along the way.
    As I drove home tonight in my car, before I even new you had posted again, I listed to a radio station (Catholic),
    It was about St Jarrad Who I knew nothing about, but I listened to it. After listing about his journey, how ironic you talk about the gift of blankets. I prayed my whole way home, just talking to GOD & hoping he hears me. I will continue to pray for GOD'S grace for your family. My love, hugs & prayers!

    ReplyDelete
  39. Mindy, I can relate to every word. Holding you close in prayer tonight.

    ReplyDelete
  40. “In the end, only three things matter: how much you loved, how gently you lived, and how gracefully you let go of things not meant for you.” You, Mindy are facing the hardest challenge of all and with such grace. Peace and Prayers xoxoxoxxox

    ReplyDelete
  41. Mindy I am so sorry you have to go through this. I am so sorry Ben has to go through this. I never thought I would be where I am either. I now completely understand the true meaning of taking life day by day, hour by hour, minute by minute. Continued love and prayers to you all.

    ReplyDelete
  42. Praying for you this morning sweet mama. Tears streaming. Thank you for letting us into your world like this. You are making an impression and God is bringing you to my mind continually.

    ReplyDelete
  43. Praying for you and your beautiful family.

    ReplyDelete
  44. This is a "Mary" story, walking the way of the cross with her son. Feeling helpless and sad and sharing his torment. It's small comfort to think of the good that comes of such things because we're absorbed in the present out of necessity.

    God bless you as you share this walk with us. As you lay your heart open for us to see, I think of Holy Week and how a triumphant entrance succumbed to great sadness.... but then joy eternal.

    Thank you. While I'm so dreadfully sorry for your situation, I'm equally grateful for your heart-sharing posts.

    ReplyDelete
  45. Praying for you. Thank you for giving glory and showing God during this so hard time. In Christ, Jana.

    ReplyDelete
  46. All I can do is pray for you and your beautiful boy. I am sure you are doing the best at what God has called you to do.Thank you for so beautifully sharing your heart and struggles on this journey that God has called you to. Praying for good days for Ben.

    ReplyDelete
  47. We are going through something similar with our daughter. Oh my those steroids. They told us the cure is almost as bad as the sickness. We keep telling ourselves, its not her, its the steroids, its her kidney disease. But it is exhausting. Praying for you and Ben and your family.

    ReplyDelete
    Replies
    1. Praying for you Sue and your daughter...

      Delete
  48. There are some parents that need to be taught how to parent. There are others who "just know" what to do. You are a fortunate "knower". I don't know what you're going through, I do know I feel pain, anguish, frustration when I read your life story. I also feel love, faith, and encouragement when I read your life story. While I think BEN is the only "hero" for fighting this battle, I think YOU and ANDY are the one's who are only human. You are allowed to be tired, frustrated and annoyed because you are also full of love, faith and encouragement. You are speaking for many others in similar situations who may not know how to word their thoughts. While your heartache is unbearable to all of us..Your hearts love is a Godsend. I continue to pray..wish..hope and yes, even beg for happy days to your family.

    ReplyDelete
  49. You are a hero. I'm so sorry if it's at all possible for the strength we are all drawing from you to contribute to your depletion. Just please KNOW that you are in my prayers hourly!

    ReplyDelete
  50. I have been taking care of my elderly mother who had a stroke 15 years ago, who is non-ambulatory, has a hard time swallowing (can do it but prone to choking, so must be carefully watched while eating), is incontinent of the bladder and bowel, and cannot even sit on the side of the bed. I tell you this not to evoke sympathy, but to let you know I understand what it is to try to take care of someone you must physically move if they move at all, whom you must toilet (or clean up), who you must hand cups to and assist to drink. And who has no one else for companionship. Yes, it is exhausting. And as you said, no medals, no rewards, no way of knowing if you're doing it "right."
    In my case, the long hours of care taking have only been punctuated by occasional terrifying medical crises that come along once in a while (congestive heart failure, flu that leads to respiratory failure, mild heart attack, failure of and need to replace a pacemaker.)
    The world has all kinds of bad solutions to this care taking burden, all of which involved avoiding the problem yourself and shifting the burden to someone else. But for me, I am convinced this is the work, if done correctly, that will make me a saint. And I DO want to hear, at the end of my life, "Well done, good and faithful servant."
    I don't get to choose the trials and difficulties God sends to me. I don't get to choose my cross. But I am instructed to carry it and follow Christ. I can say no. But if I do, then how can I call myself His follower?
    The cross is the instrument of my torture and death. I must never forget that is what it is. I should expect it is what will kill me.
    Over the last 15 years I have learned one thing. As soon as I begin to think about what this costs me in terms of energy, strength, time, effort, sacrifice, I begin to feel angry, upset and frustrated. But I told God when this all began, "Your will be done. I will do this, if you want me to. I will take care of my mother." I did not know if she would live 1 day, or 1 year, or 20 years.
    So how do I remain patient, serene, accepting God’s will amidst this difficult trial? I take the focus off of me and put it onto her. When I consider what I would want if I were my mother, I quickly see I would want someone to assist me in all my needs, to stay with me, and be kind to me. So I pray for her. I ask God to help her in her suffering. I pray for the grace to keep going as I walk to Golgotha. Because the realization before me is that whatever else happens, this will not end well. In spite of everything I have done, my mother will die. We will suffer together, and then she will die.
    Where else can I turn but to Jesus Christ?
    Praying, praying, praying for a miracle for your family, for Ben. Praying he will be healed. Praying he will live a long life before he must go home to Our Lord. Praying the very angels of God will assist you in your Garden of Gethsemane.

    ReplyDelete
    Replies
    1. You have cared for your mother through so many crises over 15 years, with love and devotion to God. Do you have a plan in place for what happens if you wear out, physically, while she still needs care? Is there someone ready to care for you? I think it is admirable that you are devoted, and I hope that you will also accept respite when it is offered. As they say on the airplanes, if you are traveling with a small child or someone who needs your assistance, put your oxygen mask on first, so you don't pass out trying to help person in need. If you haven't already done so, please consider contacting your local county Department of Social Services or Catholic Charities office, to see what temporary forms of respite may be available for you. Accepting a small break is not putting down the cross you bear--- but rather restoring yourself to pick it up again with renewed strength and refreshed energy. Blessings to you.

      Delete
    2. No, I do not have a "plan" for when I wear out. No, I do not have anyone to care for me (I never married and have no children, and my siblings are all male, and have no interest in what goes on here, nor do their wives.). I have no plan but Jesus.
      I do not care about what the world advises and the oxygen mask analogy. I do not care about all the advice of ditching this cross. Sorry. You are wise in the ways of the world, but not in the ways of God. It is hard to trust God. I know that. I face those same fears you mention. But I have made my decision. I will trust that God has a plan.
      I only told my tale to console Mindy, to let her know some of us are also on the road to Calvary, not to call attention to myself. It is just that I know what goes on in the heart of the care taker. I hope it will console her as she suffers in her anguish and exhaustion.
      It is hard to trust in God alone.
      Thank you for your comments, but by the way, if something does happen to me, something will happen to my mother; probably exactly what would have happened to her if I were never here. She will be placed in a nursing home where she will be neglected and will die within a year. No one will visit her, or make sure she is being treated well. Or God will send someone else to care for her. There is no "plan" to make, because I am depending on God's plan.
      God bless you.

      Delete
    3. Thanks for your reply. I don't want to take up too much space on this thread, but I am praying for you even though you are clearly a very strong caregiver and you have a close connection with our Lord, and His Grace has given you strength in the ordeal of 24-7 caregiving for 15 years without assistance and without burning out or despair. You probably do not need additional emotional support but I am just going to place this link here just in case others who can identify with your circumstances might benefit from the support that is offered:
      http://www.agingcare.com/Caregiver-Forum

      Delete
  51. Continued prayers for your strength, especially. This is such an unusual case where respite care for Ben would not likely be accepted by Ben. He wants you, his family, around him at all times and I can't even imagine how hard that is on so many levels. Wanting a break, yet not wanting to leave. Ben so needy. Your other kids needing you, too. The delicate balance you and your husband are having to figure out is beyond what I can wrap my head around. Yet God does go before you and knows all of your needs intimately. You have so many prayers surrounding you. Much love from a woman you've never met :-)

    ReplyDelete
  52. Come, Holy Spirit...fill Mindy with strength, wisdom, and endurance, to tend to each of her little ones' unique needs today. Amen

    I want you to know, Mindy, that while I don't know you, I weep with you in these posts. And so do many other moms that I know. Much love to you, sister in Christ, and many prayers being laid at the feet of Jesus...

    ReplyDelete
  53. I am amazed again by your clarity and insight, and how you can write this down in the midst of all you are going through. God is carrying you and your family through this right now, and I'm so glad you can see his touches. The story of that blanket is so amazing, what a God we have with everything he has going on in the world to make sure that blanket was put there just for you, wow!! Praying for strength for all of you as you walk by faith daily, Angie

    ReplyDelete
  54. Mindy~
    Your family's faith and strength is amazing! My heart aches when you talk of how Ben wants you all around him all the time. It must make him feel safe. I have never been in anything even close to your situation but a therapist was a great comfort to my children when our family experienced a crisis. I know parents try their best to hold it together for their kids but sometimes I think we overlook how much our kids hold in trying to also protect us. I can't even begin to imagine what you all go through daily. I am thankful that Ben is blessed to have such a loving and caring family to help him through this frightening journey. I also pray for Jack and Megan. This has changed their lives forever too. You are a great mom and just like anyone else all you can do is your best to face each day with love and faith.

    ReplyDelete
  55. If I may speak on behalf of all who have offered information/advice, we are truly sorry for causing you further pain and frustration. We have absolutely no idea what you are going through. I hope you can see that all we really meant was to empower you with the knowledge that you do have options, just in case you feel moved to look into any of them. If you don't, that is entirely your choice and does not mean you are doing anything wrong. Really, it doesn't. Just keep praying and follow your heart wherever it leads you (wherever He leads you). We are all still praying for your family.

    ReplyDelete
    Replies
    1. What I meant to say is that we don't know any more than you do whether anything can help. I think we probably mean to throw ideas out there and hope that G-d moves you toward one of them, but He may and He may not. It sounds like perhaps He is not, and that is all I meant. I apologize if it came out wrong. No one knows the path you are meant to follow except G-d and yourself, from what you can sense of Him. I hope I am wording this okay.

      Delete
  56. Mindy,
    How can we bless you? How can we help you, your family, and Ben? You've captured our hearts and you have our attention... there are SO many generous and WILLING people here.
    I'm also pregnant, 6 months along, with a 4 yr old boy and 2 yr old girl. I can only imagine, and it breaks my heart. Im going to keep begging our Lord for a miracle, because thats what Id do if my Andy was sick like your Ben. I promise I wont stop praying for him.
    I feel like we can do so much as a community to practicaly help you all right now. Please e-mail me katiephlips902@gmail.com. I have a few ideas but its up to you. I wont be upset at all if you just want privacy. God WILL take care of your family. Thank you, for being an encouragement to US. We know the last few months have been the worst in your life, and still you shine the light of Jesus to every one here. That would be impossible to do without Him. God bless you, Mindy.

    ReplyDelete
  57. Is it time for Hospice? They are a wonderful group that might be able to give you and your husband a break. The don't mind if a miracle happens either!

    ReplyDelete
  58. Your on my mind every single day. You are such a strong woman. There's nothing I can say or do to make you feel better, but please just know you are in my thoughts and prayers.

    ReplyDelete
  59. Sweet, sweet Mindy! You, Ben and the all of your family are in my prayers daily, continuously! It's ok to feel all of these emotions....even Jesus asked for this cup to be taken from him if it was God's will. Jesus is aware of all of these emotions; feelings; frustrations, and feelings of being overwhelmed and as you stated....he goes ahead of you. I know that through Ben's illness he has brought many, many people together praying...some for the very first time in a long time, and some for the first time ever. As hard as I try to understand why God hasn't given Ben the miracle we are all praying so fervently for, your words help to remind me that God will do what is best for Ben and that will bring God praises and glory. Please know that that you are doing everything just as God wants you to do. I pray that you feel God's tender, loving, comforting, protective arms holding you close and giving you peace, strength and rest. <3 <3 <3 <3 <3

    ReplyDelete
  60. Thank you for this candid post today. As I have already said, you are such an inspiration. I buried my mother 2 weeks ago and your blogs have helped me get through this difficult time. My mother had lived a wonderful life of 78 years, so, it is nothing like losing your 4 year old son, but, just some of the things you say make me remember God is in control, He knows what is happening, and your devotion to Him is remarkable.
    I continue to pray for Ben, but, tonight, my prayers will focus on you, Mindi. I pray for your rest, strength, peace, and comfort as you take care of not only yourself, but, Ben and the rest of your family.

    God Bless,

    COLE's Prayer Team

    ReplyDelete
  61. Just a note to let you know that people who only know you, your son and your family through your blog, are praying for you. Lifting you up daily. May you experience rest today. May you experience peace in your heart and mind as you have exhausting days and nights. May God allow for sweet moments in the midst of the frustration and irritability. Parenting is the hardest thing in the world, parenting a child who is transitioning to his forever, has got to feel like one of the most impossible things in the world. I don't know you, but there is a lot of love, hurt and compassion in my heart for you as you walk this journey.

    ReplyDelete
  62. Dear Mindy, Andy and family
    We are praying for you as you go through this.
    God please be before them, behind them, surround them with your strength and peace and love.
    Beverly R Smits

    ReplyDelete
  63. God bless you and your beautiful family during Easter and beyond. Praying for you!

    ReplyDelete
  64. As many others have said, the words are hard to write. Many of us love you and your family without so much as an introduction. But God binds us all together for such a time as this. You are a light to so many right now, Mindy, even in your darkest hours. You are so raw and real, and I admire you more than you will ever know. I am praying for your family, sweet young lady. And God holds you in the palm of his hands.

    ReplyDelete
  65. The pale blue fleece blanket with the duckies on it. I can barely see through my tears as I type this. I wish I could take your pain away. I think about your family every single day. I pray for your family every single day.

    As a mother to twins (boys as well), I feel so compelled and inspired by you. Your words have meant so much to me and have touched me more than you will ever know.

    My arms and heart are wrapped around Ben!

    ReplyDelete
  66. I have posted before, but feel it is laid on my heart to repeat the healing testimonies I have witnessed. It is totally against my nature to be so bold, so that is how I know this is the Lord's leading. I noticed on a post by Harmony on this page, she mentioned that in India, they use Turmeric to prevent & to kill cancer cells. This is well-documented, even in the Western medical field. I witnessed a healing myself, when an elderly woman was told she had lung cancer. She began taking turmeric capsules daily & 12 years later is still strong & healthy. A lifelong God-centered life & Faith were also a mainstay. I referred a friend's daughter to this treatment, as she was recovering from chemo & radiation treatment for breast cancer. After taking turmeric for 6 months, the doctors were amazed at the disappearance of the tumors. But the one testimony that is what I would call an 11th hour healing is the one God's put on my heart to get across to you. It concerns Barbara St. Onge, who has posted several times on this page. I met her at the Chapel & we have become good Christian friends, encouraging each other with scripture & prayer. When she started going to radiation & chemo for a neck cancer last year, the lump was almost the size of a tennis ball. Even after months of daily radiation, it remained. Then she went to CCS Oncology & had 3 weeks of targeted radiation (no chemo) with the True Beam, which can deliver more pinpoint, intense radiation to only the tumor. To my amazement, when I saw her after this, the lump was completely gone! So just maybe there is something to their advertisement slogan 'New Hope, New Technology for all types & stages'...Barb also took turmeric prior to these treatments, & a strong faith in God's Word & Promises were I'm sure a major aspect of the successful treatment. I think we need to do all we can in the natural world & God will add His Super to our natural. Like the parents of April, who posted above, we should refuse to take the visible signs as absolute, & stand on God's Promises & we will see the 'Evidence of things Unseen' (Heb. 11:1) All this to say: Not discounting Faith & Prayer as miracle-working Power, PLEASE, PLEASE get an opinion from CCS. There could be a difference.

    ReplyDelete
  67. Hello Mindy.

    You don't know me but I am a friend of J and A Owen who have let me know of your story through prayer requests at our church. My family have been praying in earnest for you all since we learned of your Ben several weeks ago.

    I have a little something I would like to send to Ben (and you) if you are comfortable with sharing your address with me.

    My email address is sgrbear724 @ yahoo and my blog is:

    www.zeahrenaissance.blogspot.com (So you don't think I am a loony-bin.) Or at least, not TOO much of a looney.

    It won't be much, but hopefully it will bring a bit of sunshine. Lots of love and so many, many prayers.

    ReplyDelete
  68. "Prayer is talking to God. Meditation is letting God talk to you." While I hesitate to offer any more advice I would just like to share a gift that was of great comfort to both my loved one and myself as a caregiver as we faced the extreme anxiety, fear and pain that end of life brings. Meditation was a way of easing the feeling that 'loss of control' can bring. It was a gift I stumbled upon in the last month of my loved one's life- divinely sent. Oprah Winfrey & Deepak Chopra had just begun their first 21 Day Meditation Challenge series and it was such a saving grace. They have just begun their third in the series, it can be accessed free on line and each session takes 20 minutes. The music, imagery and just listening to Deepak's reassuring voice will have you both feeling calm and restored. Connecting with breath is also extremely helpful-slow breath in 1 2 3 4/slow breath out 5 6 7 8. Keeping you, as always, in constant thoughts and prayers. Sending you peace.
    Walking along side you as you travel on your path.

    ReplyDelete
  69. Grace. That's exactly what I prayed you'd receive in abundance today. Your entry gives me chills, and reminds me that God has gone before, equipping us for our specific journeys. Some of our climbs will consist of rolling hills. Some of them will be very steep. I thank you for sharing your faith and giving God the glory during what I cannot even fathom is the steepest climb you can imagine. We don't know each other, but I pray everyday for your Ben. And for peace and comfort for all of you. And for your unborn baby, that she is born healthy and happy. Prayers to all of you as you struggle through each moment. I continue to pray for miraculous healing.

    ReplyDelete
  70. Mindy, I'm another that doesn't know you personally (just a friend of a friend).

    Lots and lots of prayers for you Mindy, Ben, and your family.

    We don't know the right decisions as parents, but we have to trust that He is leading us the right direction though we don't even know what that is. You are not alone. It is so hard as a parent to make these calls, to have the patience, when we're all still learning.

    I continue to pray for you and your family and Ben each and every day. We're all here for you, and most of all He is here for you.

    ReplyDelete
  71. Mindy,
    As I scrolled through the replies to your latest post, I see so many women, such a diverse group, with so many things to say to you. A few may be tossing advice your way, wishing they could 'fix' this. But most are simply inspired and amazed by you. Your story has touched us all; you seem just like us. We all feel like you're our friend and that we could share a cup of tea, or a glass of wine with you. We could hang out, had we met you in real-life and under different circumstance. But then, we fall into the cadence of your wise words and absorb the essence of what your days are like. Then.... we think we're nothing like you. We wouldn't be that strong. We wouldn't have unquestioning and unwavering faith (I guarantee you mine isn't as bulletproof as yours). We couldn't handle what you handle. We couldn't possibly express ourselves as beautifully.

    Who knows what any of us can deal with, if we're asked to? You are surely a model Christian mom and wife, full of grace. You are a gifted writer who's been able to touch a huge number of people. I daresay you've strengthened the faith of some and inspired others to seek God.

    On behalf of all of the people who are holding you and your family close in prayer, thanks for taking us on this journey with you. Jesus had his Disciples and I think you have yours. :-) Offer up your suffering and Ben's to Him this weekend. I wish you Easter Peace and love.
    Kim

    ReplyDelete
  72. I lost my father to Stage IV glioblastoma a few months ago. And I have a 4 year old. Praying so hard for you and your family right now.

    ReplyDelete
  73. You are amazing. There are so many of us thinking of Ben on an hourly basis. Thank you for the blog. You're a wonderful mother. God bless you and your family.

    ReplyDelete
  74. Thanks for sharing your walk with Christ. It inspires me to be better as I walk with Him in my much smaller trials. Thank you and you are in my prayers.

    ReplyDelete
  75. My heart breaks for your pain. You and your family have been in my prayers since I first heard about Ben. Your faith, honesty and ability to express yourself touches us all deeply. Continue to support one another and allow your family and friends to support you. Praying for strength.

    ReplyDelete
  76. We continue to pray for Ben and all of you often, especially these past few days for your emotional and spiritual strength. Hang in there, God's timing is perfect.

    ReplyDelete