Healing Touch

Have you ever heard the phrase 'healing touch'? It suggests that physical touch or physical contact can heal. Hailey's life taught me the truth behind this common phrase.

In the first days of Hailey's life, she underwent surgery,  she had a contraption put on her stomach, she was poked and prodded everywhere with needles as doctors and nurses tried to find good veins for putting in tubes and IVs and drew blood and so on,  she had a blood transfusion, she bruised, she swelled, she would have experienced pain had she not been under the affects of morphine. Obviously, no one wants this kind of life for their child. (But I will say, this life, is better than no life at all... and as you will see in Hailey's case, this can be turned around with a little healing touch, and faith).

As I've explained in prior posts, during those first few days, before we knew Hailey had Trisomy 18, she spent nearly 100% of her time in the NICU sleeping on her back with tubes attached to her everywhere. She stopped breathing many times and sent her monitors into a beeping frenzy often. We couldn't hold her. All we could do was talk to her and gently caress her skin. Sometimes we would have her hold our fingers in her hands. But it wasn't enough. Life was painful for all three of us.

Then came the time when we learned she had Trisomy 18, and we decided to stop all medical treatments and interventions.  It was a difficult decision, one we did struggle with, but Josh and I came to an agreement and made the decision we knew we needed to make for Hailey. We couldn't fix her though we desperately wanted to, we couldn't truly treat what was wrong with her, and in the end, nothing would save her life. Very hard realities to accept, but we both believed in quality over quantity in terms of Hailey's life. We wanted her to have the best quality life possible, even though it may be shorter without treatments and interventions, rather than have her live a poor quality of life for many days.

At that point for us, we were restricted in our physical contact with her, and we were restricted by visiting hours and in the number of visitors allowed. And for Hailey, she was attached to so many tubes and was already physically being put through more than one could imagine. It was not quality for her or us. We wanted Hailey to feel love. We wanted to give her our love. We wanted her to experience physical touch through kisses and cuddles every hour of the day. We wanted to be with her and be close to her. We didn't want restrictions. And we didn't want to put her little body through any more pain or stress that future surgeries and things would have led to.

We were told that if we continued with 'treatments' and interventions, that she would have another surgery and have to be put under anesthesia. The doctors told us that they didn't know how she would respond and that surgery like that always has risks even for a healthy baby. They said that there would be a good chance that Hailey would never come off of the ventilator that she would be put on during the surgery. Which meant we would never get 'her' and she would never get us. She wouldn't be alert. We'd never get the chance to take her home. She could be in the NICU her entire short life in a vegetative state. And we did not want that for her, or for us.

Most importantly, we were able to make the decision we made, and be confident in it, because of our faith in God. We knew Hailey was in His hands from the beginning and that with this decision of ours He would either heal her or take her on His time. We felt confident that we did what God wanted us to do as His caretakers of His child.

We had seen many of the babies in the NICU who were there in an almost vegetative state, alone. One of the palliative care nurses who supported our decision talked with us about how difficult it was emotionally for NICU nurses to be around those babies. The parents simply stop coming. They get drained. They have to get back to work and other things. It's absolutely heartbreaking. The little African American baby boy next to Hailey never had a visitor the entire time we were in the NICU with Hailey, which was days...not one visitor...

As I've mentioned many times before in early posts, the minute we decided to stop treatments and interventions we were moved to a private family room with no restrictions for visiting. The doctors didn't think she had much time left. Her breathing attacks had been frequent, and it was likely she could have one at any moment and pass.

But to everyone's surprise... Hailey did a million times better once we stopped all the 'treatments' and 'interventions' she had been having. We had to agreed to the administration of morphine as we felt was needed for her pain and the use of an IV for fluids and nutrients. Well, Hailey did so well that she got completely off of the morphine and didn't seem to be in pain at all so she didn't need any more of it. She did so well that she started feeding on her own with a bottle.

It was almost like the things that were trying to help her were actually making her worse.

Why was she so much better?

Healing touch, and prayer of course.

Once Hailey was left completely in God's hands with no human intervention and she could experience our touch and physical love 24/7 - she improved drastically. They thought she'd do worse, she did better. She went from a drug-induced, sleepy-headed baby, who was in pain and attached to many tubes and devices to an alert, happy baby once we were free to touch her and love her like we wanted.

Once we stopped treatments and interventions, we were able to hug Hailey and kiss her and hold her and rock her and show her all the physical love we wanted. We were able to pour out the love we had been longing to pour out on her. Since we had thought she might have a breathing attack and pass at any moment, we had her held at all times because we wanted her to go in the arms of someone she loved. She switched off from being in the arms of her mom, dad, grandmas, grandpas, great-grandparents, aunts, and uncle. She was always kept close to us. She was always watched over. She was literally held for days until she did so well that we eventually went home!

Before I started writing this post I came across this quote:

Eventually you will come to understand that love heals everything, and love is all there is.
--Gary Zukav

Clearly, Hailey's story proves this. God's love and the love her family - His loving touch and our loving touch - healed her so much that she was able to come home and spend almost a month with us there!!

Also, the story of my life since Hailey, the story of my grief, proves this quote as well. I have been doing pretty well the last 2 weeks. It's still hard, don't get me wrong, but grief has not knocked me down and left me weeping and paralyzed as it has so many times before. I feel a much greater sense of comfort and peace. I didn't expect me to be in this place so soon, only 2 months after Hailey passed. But I am. And the only reason for that is because I am healing.

God doesn't take away pain and suffering. He promises our lives will be filled with troubles. But He also promises that He will be there with us during the troubles. He will heal us - and that is what He spoke to my heart that day I struggled so hard to understand why this was all happening. I was so afraid of my grief and what it would be like before Hailey passed. God didn't promise that He would take my grief and suffering away. He promised He would heal me. And He is. There is no other explanation for why I am the way that I am right now.

It is my turn to experience God's healing touch. He is able to heal my broken heart because I have given it to Him and entrusted it to Him.

The quote says 'love heals everything' and 'love is all there is' - it is true - God is love. God heals everything and God is all there is.