Finding Purpose In The Pain

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.

CHRONIC GRIEF: WHEN LIFE DOESN'T GO AS "PLANNED"

Our church recently had a family game night. I was playing Farkle at a table with other ladies. Two who are currently pregnant, one with her first child. Oh, the anticipation! The glittery eyes, the talk of baby things like car seats, strollers, carriers, sippy cups and swings. I loved joining in on the celebration, excitement, and planning for this new precious one’s arrival.

The conversation turned to maternity leave with all the same joy and sparkle of the previous conversation. Six or eight weeks off work and then back to work and baby gets to come along and how wonderful the situation will be so mom can be out and about. 

That triggered me. I’d had the same anticipation when I was pregnant. I’d had similar expectations. But it had turned out so very differently.

Suddenly, I was struggling to participate in the conversation or even stay sitting at the table. I couldn’t rejoice with the anticipation of the soon-to-be-mom anymore. I wanted to try to warn her to be careful with her expectations or at least have a Plan B in case baby isn’t an easy baby. Because, well, you just never know.  

I couldn’t leave the table without it being abrupt, so I tried hard to keep a pleasant, neutral look on my face so I didn’t throw a wet blanket of gloom on everyone at the table and festivities. I don’t know if I succeeded, but conversation continued swirling and my mind went back in time.

I’d been so excited about my baby. I’d planned and prepared. I’d gotten everything ready. I’d been so careful about not taking any over-the-counter medications or eating food that could pose a danger. I researched natural birth. I had a birth plan. Due to our life circumstances at the time, I had an after-hospital plan, a 2-month plan and a first year plan. And of course, expectations for the rest of my newest little love’s childhood and life. 

But, things don’t always go as planned. You know that or you wouldn’t be reading this. Sometimes plans gone awry are a little hiccup, no big deal. Sometimes, life will never ever be the same.

During the first few years I fought it with everything in me. In the last few years I have come to accept it – whatever “it” looks like – progress or regressions. The unknowns of the future. I grieved the child and life I expected but will never have and came to accept our new normal. Not to say that daily life is easy. But I’ve accepted our reality and am content in my life.

Let me be clear – I delight in my child and who he is, but accepting all the challenges that came with him, the struggle that he (and we) live with daily, and the total upending to our entire life expectations is what was difficult.

Then there was game night and an excited new mom-to-be. As I sat down to write this blog post and traveled back to where she is now, I found tears rolling down my cheeks and sobs escaping my throat. I guess I’m still grieving the loss of that dream, of what never was and what never will be. It’s been so long since I’ve gone there and remembered that I ever had a different dream than what I’m living right now.

Chronic grief. It can be all consuming when you’re in the worst of it or can hit at any moment, unexpectedly. It’s okay. It doesn’t mean you don’t love your child with all your heart. It means that you lost something that was dear to you. Cry, sob, acknowledge it, name it - grief. Then dry those tears and go hug the child you do have and love dearly.

Written by Sarah McGuire

Sarah McGuire  is the Mom of two boys and co-founder of Hope Anew, a nonprofit that comes alongside the parents of children with additional needs on spiritual and emotional level. You can follow Hope Anew on Facebook here.

Unique Challenges Of Marriage: My Spouse Is Overreacting

“My wife thinks our son has autism.” It was morning and I was sitting in the office of a colleague of mine. He had just asked how I was doing and that was my reply. There was a disassociation there, as I didn’t want to believe it yet.

It took me longer to accept the diagnosis than what it did for Sarah. For Sarah, the diagnosis was a relief because it gave direction and helped her better understand what was going on. She had been caring for our son all day and all night, day in and day out. She was searching for answers when no one else could give us any.

I was away at work all day and not home until late evening. I didn’t see the day in and day out as much. For me, the diagnosis communicated a weight, a finality, the beginning of the end of a dream. I didn’t want the diagnosis to be true so I denied it.

You may find yourself identifying with where I was. You may be smack dab in the middle of denial and think that your spouse is way out in left field with whatever diagnosis your child is facing. You may think your spouse is overreacting to whatever is going on. If you are in this camp, it can be easy to become irritable whenever the diagnosis or other health struggles are mentioned. It can be easy to be upset and even grow bitter at your spouse.

If this is where you find yourself and some of the above thoughts resonate with you, remember it is time to love well. Notice, I didn’t say to just humor your spouse but love them. Here are some ways that you can do that:

• Engage with them. Don’t just burry yourself in your work to avoid the problem. They are likely lonely and need you.
•  Listen to them. Set down the phone. Turn off the TV. Make eye contact and really listen.
• When they bring research and information to you, study it.
• Whenever you have a chance, go with them to the doctor appointments. Don’t be afraid to ask the doctor questions.
• Trust them. I don’t know you but more than likely, if you are in this spot, your spouse is the primary caregiver and is with the child a greater portion of the day. Trust them and trust their instincts.

After a time, I accepted what was going on and became that much more engaged. While I went on to go through the other aspects of chronic grief, I came to a point of being able to dream a different dream for our son and Sarah and I became a stronger team.

How you demonstrate love to your spouse during this time is so crucial. This time can have the effect of tearing apart a marriage or strengthening it. How you show love to each other will make all the difference.

How can you best show love to your spouse right now?

P.S. If you feel like your spouse is in denial, don’t just print this article off and leave it waiting for them somewhere! That probably won’t be received the most favorably.

Unique Challenges of Marriage: My Spouse Is In Denial

We were sitting down in a small diner with some friends. They were sharing with us about their journey in special needs and how they were doing. As they were sharing, the husband began talking about the future and how he dreaded how quickly their daughter was approaching legal driving age. His wife just stopped and looked at him and replied that their daughter would never be able to drive due to the how her special needs impacted her. Her husband listened, but you could see he was not ready to accept it.

Denial, anger, bargaining, hopelessness, acceptance are the 5 most associated aspects of grief. We are all familiar with them but that doesn’t make it easy to experience. It is easy to assume that you will be in the same spot as your spouse but that isn’t always true.

Initially, it can be so hard being in different places in the grieving process, especially when one spouse is stuck in denial. The one person who has been there with you through the entire journey is not in the same spot and may even be at odds with you, putting up barriers to different treatments or therapies. This can lead to increased feelings of isolation and loneliness. It can create a fear for your marriage as you feel like you are in a spot of having to choose between the health of your child and your spouse.

What can you do?

• Love and respect your spouse well. Recognize that they are likely going through their own internal battle. Listen to them and check in with where they are at emotionally. Keep bringing information to them. Not in a nagging way but in a factual way. Share what the doctors are saying and what the therapists are saying. Be real with them about what your day looks like and don’t gloss over what the struggles were (don’t exaggerate them either).
• Connect with others who get it and have been there. I don’t mean a group that just gripes about how un-understanding their spouses are but a group that will encourage each other. This might be a support group, a Facebook group or some other online group.

It is a hard and lonely spot to be in. Eventually, the denial will pass and you both will find yourself in a much better place.  The different rates at which you experience the various aspects of chronic grief will become a strength as it will allow you to better support and encourage each other.

Are you the parent of a child with additional needs? What aspects of chronic grief do you relate with most right now? Denial, Anger, Bargaining, Hopelessness, or Acceptance

If married, where would you say your spouse is with these different aspects of chronic grief?

Would your spouse say that you are living in denial regarding your child’s needs? Stay tuned for part two: “Unique Challenges in Marriage: My Spouse is Overreacting” next week.

WHEN THE PAIN IS TOO GREAT

On June 20, 2017 the Grand Rapids News published an article with a title reading, “‘Saw his son suffer too much, too long,’ friend says of principle in murder-suicide.” This article shared a friends perspective of George Heckman, an elementary school principle, who took his son’s life and his own life.

George’s 28 year old son Grant had cerebral palsy, was non-verbal and confined to a wheel chair. If you were a friend of George’s, you would think that he had it together. George was described as being able to make others laugh. He would volunteer and help other families, and he served on the board of an organization that came alongside those who are disabled. If there was poster of a parent who appeared to be doing well and to be thriving, George’s picture would have been on it.

Unfortunately, George’s story is not unique and has been repeated with other parents of children impacted by special needs around the country. In Michigan alone, over the last five years there have been at least 3 attempted murder-suicides of parents and their child who has additional needs.

There may be some days that you feel like George. You may feel like when others see you, they see a person who has it all together. While inside, you are just struggling to make it and it is killing you to see all the extra pain and hardship your child has to endure.

As parents of children with special needs, it is not uncommon to deal with chronic grief. Many have mastered the art of wearing a mask, because we think, “Nobody wants to hear about our pain again. The same struggles, the same pain we’ve been dealing with for the last five, ten, twenty years.”

The pain, hurt and anger can only be buried so long. In time they will reappear in one way or another. It may not be as extreme as George Heckman’s case but it will reappear, unless you address it.

Addressing the pain, doesn’t mean the pain will go away. It might but not necessarily and this doesn’t make you a weaker person. You will have good days and you will have days you really struggle. On those days you struggle, have one or two people that you can really be open and vulnerable with. Have those people you can take your mask off with without fear of how they will respond. It is amazing how much healing can take place when you can be real about your pain.

Do you have that person you can be real with? That person who isn’t scared when the mask comes off but respects and loves you more because of it?

If you read this article and find yourself feeling suicidal or homicidal, call the National Suicide Prevention Lifeline at 1-800-273-TALK (8255) or text with someone at the Crisis Text Line by texting HOME to 741741.