A Note For The Brokenhearted
I keep waiting for it to get easier. For the sting of this disease to ease. Written by Laurisa Ballew
I keep waiting for it to get easier. For the sting of this disease to ease.
One of my daughters is a sensitive soul. She feels things deeply. She will skin her knee and just cry so hard about it. (for a day. mmmkay?) And then in the days to come will continue to tell me it hurts, she will wince, guard it, and even weeks later she will point out the mostly healed spot and recount the pain of it. And try to con me into giving her another princess band-aid. I mostly ignore her- count it as drama. Because let’s be honest it partially is, but it is also how she is affected by pain. It really bothers her. And then with the next wound it is the same. Over and over again, she doesn’t seem to get much tougher.
And that is about how I feel about my child having Tuberous Sclerosis. There has been so much grieving with this disease. I find myself waiting to settle into this being my life. To be content with this reality. In some ways I have found peace with a lot of things. And in so many other ways the core of my being opposes these struggles head on. It makes me feel conflicted. I want to walk this out peacefully. To find Joy in the crevices of my broken heart. To let life and love and experience pour out of its cracked places. But that is a hard things to do.
Sometimes I feel like I am the ‘about healed’, hardly visible skinned knee. You know when the scab is gone, but the new skin is just a darker shade? Not obvious to those around. But when I think I should be feeling better, a remembering-pain from the depths of my soul comes rushing forward.
Time and time again I come back to this. If God cares about me even half as much as I care about my daughter, if he feels the pain of the deep wounds like I feel hers. If he mourns with me like I mourn with her. If he really is the Good God that I think he is, then a few things must be true
I am not even slightly alone in my pain. There is a real, powerful God standing with me through all of this.
The brokenness of this world was not God’s Plan, but he will work through it. He has worked through it. He has sent His Son, and someday all the brokenness will be healed. My favorite children’s bible says this about Jesus coming back “Everything sad will come untrue. Even death is going to die! And he will wipe every tear from every eye. Yes, the rescuer will come. Look for him. Watch for him. Wait for him. HE WILL COME! I promise.” Just take a minute and let that wash over your broken heart.
My friends- There is no shame in broken places. Brokenness is the thread that connects us all. There is holiness in standing with each other in these moments.
Recently a friend shared with me a Japanese art form called Kintsugi. It is where value is still seen in brokenness. And broken pottery is fixed with a gold lacquer.
The bowl is not useless because of its brokenness. Instead its brokenness is highlighted, seen as a part of its history, part of its beauty.
May these broken places in my life not shatter me. Or render me useless. But instead become a golden bond of character. Of strength. And beauty.
Peace and love to you dear friends as we stand together in the beauty of our broken.
Written by Laurisa Ballew
Laurisa Ballew is a nurse by trade and mother to a special needs child by fate. She fiercely believes hope and grief walk hand in hand in life, and that storytelling is the universal language that connects us all. Laurisa has three daughters and writes about the constant humility of parenting in her blog Raising A Sisterhood.
Finding Purpose In The Pain
Have you ever been heartbroken at the extra pain and the struggles your child is facing?
Written by Jonathan McGuire
Have you ever been heartbroken at the extra pain and the struggles your child is facing? I get it. The doing everything you can for your child. The wanting to be able to do more. The helplessness, the weariness from always pushing, always looking, always being on.
Viktor Frankl survived four concentration camps in the Holocaust and developed his own system of psychotherapy. At the core of his therapy, he felt people were searching for meaning. More than six million Jews died during the Holocaust. Viktor believed that those who survived seemed to have a meaning and purpose in their lives. They had some goal that was beckoning them, something they wanted to do, some project they wanted to finish. It may have been as basic as living so others outside the camp would know the atrocities that were happening.
While I don’t agree with Frankl on many things, I do agree that we are searching for meaning. When we see our children struggling, it creates an incongruity in our hearts as we try to find meaning and purpose in what they are going through.
When we were in the worst of it, I would have struggled to personally share how there was meaning and purpose in this journey of disability that we were going through. I could give the church answer of God is using this to bring glory to Him, through my response and how I treated my family (which is true) but beyond that, I couldn’t understand what other purpose there could be in this journey.
Last week was our youngest son’s birthday! He turned 12 years old and we had a wonderful day of celebration. We started the day off by going out for breakfast, just he and I. I was able to find a restaurant that served breakfast food that he was able to eat. We talked, we laughed and I reflected.
How could life change so much in twelve years? This persistent, out of the box thinker has completely changed the direction of our family. I still remember rocking him on my chest as he cried and screamed through the night, me trying to give Sarah a break. I remember the joy of finally hearing a few words come from his lips, and the agony of his losing those words later.
I remember relinquishing dreams that I had for him and our family as he grew. I remember how this journey slowly shaped and changed my heart. I grew from thinking I could help people who were struggling because I had been trained to, to having an intimate knowledge of what it means to be helpless and broken. The list of how this young man has changed me could go on and on.
God has already used this young man to accomplish so much, and I know without a shadow of a doubt that God still has much more that He is going to accomplish through him.
Some of you may be in this place trying to figure out the purpose in your child’s pain. As you struggle with the incongruity, remember these truths:
God is good (Psalm 145:5-7)
God is sovereign (Proverbs 19:21).
He personally knows your pain (Psalm 56:8).
“You made all the delicate, inner parts of my body and knit me together in my mother’s womb.”
~ Psalm 139:13 (NLT)
Written by Jonathan McGuire
Jonathan McGuire is the father of two sons and the co-founder of Hope Anew, a nonprofit that comes alongside the parents of children impacted by disability on a spiritual and emotional level. You can follow Hope Anew on Facebook here.
When You Can't Make It All Better
I was heartbroken by my son’s pain. I wanted it to stop. I wanted to take it away. I was heartbroken by the trapped world my son lived in with a body and brain that didn’t function normal or well…Written by Sarah McGuire
My precious son was writhing in pain, screaming, bashing his head, couldn’t talk and tell me what was hurting or what was going on. He wasn’t hitting developmental milestones. He got sick for three weeks at a time if I took him out in public once per week for church. He would meltdown if we went to a store, if I put my hair in a pony tail, if a car-carrier semi drove by, or any other of seemingly 100 other reasons.
I was heartbroken by my son’s pain. I wanted it to stop. I wanted to take it away. I was heartbroken by the trapped world my son lived in with a body and brain that didn’t function normal or well. I wanted to fix-it. I wanted him to be set free. I wanted to know who he really was, not just the altered state of pain, agony, confusion and misunderstanding I saw in his eyes daily, on the days he was “there” and not “absent”.
I hear from other moms with similar feelings. Kim’s 13 year old son is still wetting the bed and she doesn’t know how to help him. Anne’s 5 year old son, who was severely injured at birth, needs 24-hour home nursing care while another son is a danger to the family and has needed to go live in a group home. Christy doesn’t know where to turn for her adopted daughter’s unknown trauma and personality disorders. Tiffany’s daughter is scheduled for her 23rd surgery. Their children are in so much pain. They have so many challenges. They want to help. They want to make it better.
Are you there? Do you feel the pressure? Sometimes, the desperation? The pressure to help, to fix it, to make it all go away?
I’ve met moms of kids with disability and special needs who say their child is perfect just the way they are and they wouldn’t do anything to change it. I think their challenges must have been different than mine, because if I could have taken away the extreme amount of pain my child was experiencing, I would have in a heartbeat.
Dear pressured, desperate mom, here is a truth we need to grasp onto for dear life. These children are not ours. They are God’s. We are the stewards of this child for this lifetime, but ultimately, they are His.
He created them. He gave them to us to love, guide and care for them. He has a plan for them. When we feel this pressure to solve, to help, to fix and we cannot or don’t know what to do, we must bring the child (along with our pressures and worries) back to Him, lay the situation in His lap and ask for His help, guidance, insight and intervention.
You, dear mom, don’t need to carry a burden He never intended for you. So, give that part of it to Him, that’s His job. Yours is to love well.
Written by Sarah McGuire
