It is Well With My Soul

July is Bereaved Parents Month. In these last days of July, I thought it would be good to reflect on where we are today. I find it hard to believe that 6 months have passed since the birth of our precious twin boys. January 28th, along with the months leading up to it, and the months following, have impacted our lives in so many ways. I haven’t written about how we are doing since the last post on Caleb’s Celebration of Life. I also have not gone back to reread one single post that I wrote yet. I just glanced back at the titles of those posts, and it caught my breath. I think it’s time to reconnect with the many friends and family who have been such a source of love and support. It’s also time to reconnect with what was so therapeutic for me- writing.

As I think about the “then” and “now”, it’s as if time pushed pause on one track, and pushed play on this new, busy, still-adjusting track that looks much more familiar than the one on pause. Even as I type that, it doesn’t seem to really describe it quite right. The reason I think I feel this way, is because life in that hospital, in that NICU, and in that Cardiac ICU room seemed so foreign and so out of sync with our normal life. Now that we are out of it, it seems as if it was a bad dream. It’s hard to believe it happened. It’s hard to connect the two- that period of time and this one. I have moments when I push play in my mind and just sit there, allowing myself to relive the conference room conversation, the walk down those hospital hallways, the feeling I got as I entered Caleb’s room. I let the sadness of what could have been wash over me. I revisit photos from that day and days leading up to his passing and I find it to be harder than anything else. You start to identify the things that you know draw you into that “Grieving Room” in your mind and force you to sit in those deeper moments. The photos of him in the ICU room, as well as his things that are kept in our keepsake box and container completely draw me into that space as well. I think about Caleb and what we went through multiple times a day, everyday. The level of grief that you tap into though, can be all-consuming if you linger too long. Maybe it’s self-preservation, or a bit of avoidance, but I’ve chosen to not stay in this grieving room, only visit from time to time. I do this for the sake of my boys here with us, for our family, but also for Caleb and his memory. I can’t embrace the lessons of his brave journey or the blessings of a strengthened faith if I am consumed with depression and sorrow. I probably need to visit that space and sit in it more often and longer than I do. I’ve always been an advocate of counseling and therapy and plan on starting soon. Not because I don’t think I’m coping well, but because there isn’t one single person that is immune to even the smallest effects of trauma. I think with time, instead of a door a separation, maybe it becomes an adjoining sitting room, a space that meshes with everyday life and becomes easier to think about and to share.

I’m sure it’s different for everyone. I think that is part of the grieving process- truly processing, comprehending, and accepting that something extremely heartbreaking, traumatic, and life-altering occurred. And that by the Grace of God, you got through it. I have found that the more time that passes since the day we lost our son, the more the reality of what happened sets in. I was so hyper-focused on knowing everything I could, meeting who we needed to meet, asking the right questions, looking for the best care possible for our children, and standing in constant prayer. I wasn’t able to see the broader picture and gravity of it all. The truth is, I don’t think we will ever be done grieving. It will evolve with time, requiring different things as we celebrate holidays, milestones, and anniversaries. One thing that I know for sure- we would have never gotten through it all without the strength that God gave us.

Below are photos that I haven’t shared before. Moments that are carved into our hearts and minds forever. These are the sacred moments that we let our sweet Caleb go, giving him to God, and witnessing a peace over his precious body. No longer having to fight. I wanted everyone to see his face without all of the tape and the life-sustaining tubes that were a constant in the days we were blessed to have him. The rawness and deep sorrow just wells up in my chest. What a beautiful little boy who lived, who grew, who was held and loved. There really are no words.

More Than We Can Handle

Many people have said over the years that, “God will never give you more than you can handle”. I have since also read about how misleading this phrase is and how misinterpreted it is. In 1 Corinthians, Apostle Paul wrote to a small church in the city of Corinth. He wrote in regards to daily temptation and sin and the choices we all have. He mentioned a promise- “No temptation has overtaken you except what is common to mankind. And God is faithful; He will not let you be tempted beyond what you can bear. But when you are tempted, He will also provide a way out so that you can endure it” -1 Corinthians 10:13.

Paul was pointing out that we have a choice with regard to temptation and sin- engage in it or run from it. He was talking about temptation, not suffering. In suffering, we often don’t have a choice. There is a big difference. There are times of prayerful desperation, and when you look back at the events of the day, and you know you only came through because of His provision.

Relevant Magazine explains this so well…

The night before Jesus was executed, He cried out in the garden, “My soul is overwhelmed with sorrow to the point of death” (Matthew 26:38). Jesus told His father, “This is too much for me!”
We see this kind of thing in the Psalms, too. The Psalmists ball their fists in rage, and shout at God, “Why have you forsaken me?” (Psalm 22) In their sadness they say, “darkness is my closest friend” (Psalm 88).

What these verses teach us is that it’s OK to feel like we can’t handle it, like we are going to give up. We can cry out, “My soul is overwhelmed to the point of death.” And when we do this, we find God—the one who, in the person of Jesus, suffers with us.
When we become aware that life will give us more than we can handle and come to grips with this, we find a promise: God is faithful to meet us in the mess and in the pain.

And when He does, we learn to recognize our constant need to depend on Him. This is why Peter instructs the Church to cast our fears, worries, suffering and pain on God. He reasons we can do this because God cares for us. When life deals us more than we can handle, we can rest in the reality that God can handle it.

But, if we’re honest, even this can seem like a tired old phrase. Because when it really hurts, God can seem so far away. This is where you and I come in. We need each other to move ahead, and we need far more than tired old phrases.

In times when life becomes unmanageable, we need to be willing to walk alongside one another. When we do this, we put flesh and bone on the person of Jesus. We can be with one another in the midst of suffering, helping each other carry the weight. This means, that we, as the Body of Christ, have an opportunity.

When we are willing to sit in the pain, to walk with one another when life’s path is difficult and to shoulder one another’s burdens when they are too heavy, we become an embodied promise. We become living proof that while life can sometimes be too much, through the goodness of our loving of God displayed within us, we can move forward together. -Relevant Staff, July 21, 2020

Community

One thing I have reflected on, is the fact that we went through this entire experience during a global pandemic. From being alone when finding out we were pregnant with twins and that Caleb had a CHD, to all the many specialist appointments, learning about Critical Aortic Stenosis and HLHS, to having no visitors during the hospital stays. I turned to the experience and advice of others in Facebook groups, and still do. I could ask questions that others had already asked, read opinions on tough topics, and just learn everything I could from those in the trenches. More importantly, I got to see the faces of others who were in the battle with me. And now, in bereavement groups, I get to see the faces of parents that have endured the same indescribable pain. Faces of parents that have somehow survived losing a piece of themselves, who are wounded, deeply, yet who are some of the strongest people I have ever seen. For heart moms and dads who may read this and need the same crucial support, these are the groups I have clung to-

• HLHS/HRHS/CHD Support Group
• HLHS with RAS or IAS (RAS is restrictive atrial septum, what Caleb had)
• Children with Congenital Heart Defects
• Children with Congenital Heart Defects
• CHD Community
• BCH Heart Families of Floor 8
• Mommas of Heart Angels
• NICU Moms
• Mending Hearts (GRIEF SUPPORT GROUP) for parents who have lost a child
• Grieving Parents Healing Hearts Child Loss
• Parents of Twinless Twins

A Favorite Hymn

I titled this post, “It is Well With My Soul”, because it is a hymn that has always stuck with me. The story behind it is so powerful. In the face of incredible loss, God provided peace beyond all understanding. For those who don’t know the story behind this hymn- it is so touching.

Caleb’s Shoes

Back on January 26th (the day before my water broke), a fellow heart mom, Maleigh H., texted me about some special CHD shoes that the company Monkey Feet USA makes. Her daughter had them when she was little and they only release them every so often. Of course I ordered them immediately. These shoes finally arrived on April 5th, exactly 2 months after Caleb passed.

We took a recent beach trip which was planned back in January. We wanted to plan it far enough into the summer that Caleb would have hopefully recovered from any surgeries (we knew this was a big tentative plan), and still avoid teacher workdays in August. I wanted Gabriel to wear these shoes in honor of Caleb. Our sweet heart angel never got to wear them and never got to come on this trip. I shed a lot of tears while holding Gabriel and watching waves roll in as salty air dried the tears on my face. I hope he knows that I wish with everything in me that he could be here with us. That he could have been there at the beach to wear those shoes proudly and see the beautiful landscape that God created.

More to Come

I’ve just realized that this blog post has become incredibly long so I’ll wait to share more. I guess with all the time that has already passed, there’s a lot to say. I’m not sure what writing will look like moving forward. School is starting back soon and though I will be busy with balancing teaching and family as all of our schedules shift, I think it’s my hope to just write about life, faith, and getting through the ups and downs. If you know me, you know I LOVE humor. I think it is absolutely essential in life. I hope to include a lot of it in future posts. I never intended this blog to be shared beyond immediate family and friends, but if it helps someone else or even means something to someone, then I think it’s worth it to be shared. I would LOVE to hear from you in the comments on these posts. Your experiences, your advice, support and encouragement, ANYTHING! I think it’s the biggest blessing to be able to experience the love and fellowship of such a wonderful village!

Amy