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Jailbreak for my Heart

“In the morning, O Lord, you hear my voice; in the morning I lay my requests before you and wait in expectation.” Psalm 5:3sleepy snout2

“But let all who take refuge in you be glad; let them ever sing for joy. Spread your protection over them, that those who love your name may rejoice in you. For surely, O Lord, you bless the righteous; you surround them with your favor as with a shield.” Psalm 5:11-12

“We do not understand it is God speaking to us in our heart. Having so long been out of touch with our deepest longings, we fail to recognize the voice and the One who is calling us through it…some of us silence the voice by locking our heart away in the attic, feeding it only the bread and water of duty and obligation until it is almost dead…others of us agree to give our heart a life on the side if it will only leave us alone and not rock the boat. We try to lose ourselves in our work, or “get a hobby” (either of which soon begins to feel like an addiction)…Having thus appeased our heart, we nonetheless are forced to give up our spiritual journey because our heart will no longer come with us. It is bound up in the little indulgences we feed it to keep it at bay.” John Eldridge, The Sacred Romance

From the moment we started trying to have a family, this whole process has felt like a jailbreak for my heart. It has been a violent process of ripping away these “little indulgences” that my heart had learned to live on. It was amazing to see how much of what I used to do did not matter at all, because when it was ripped away it has not been missed. Sports, TV, video games, home projects, movies, it was all cut away like a skilled surgeon was carving out the cancerous parts that plagued my heart. I’m amazed at how little I miss these things as they are now simply a “treat” as they should be. It may not make sense to most, but becoming a father – the process – has rescued my heart. Do I miss those easy, fun times? Absolutely, like someone giving up an addiction misses their vice of choice. But I am better for taking this journey, for not giving up, and for not clinging desperately to those things that didn’t matter. Case in point, when the Super Bowl was on, I didn’t care about it or the hype that surrounded it. Does it matter if I watched it in the morning while spending time with God? No. Will it help me get through another day dealing with the many challenges in taking care of Reagan? No. IT just doesn’t matter, it is only a treat to be able to spend time doing that or anything like it. And that treat shouldn’t become the lifeblood like so many live on. I pray I can continue to focus on what truly matters and never rely on those “treats” to get me through a day or take up so much time in my life that it becomes my life. My life is here, being a husband, father, leader, and son – and I will continue to focus on my heavenly Father that has been giving us the power to tell our mountains to move out of the way.

2:2

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More.

“Complain if you must, but don’t lash out. Keep your mouth shut, and let your heart do the talking.” Psalm 4:4 (The Message)

Reagan at fence
“Let the light of your face shine upon us, O Lord.” Psalm 4:6

“There is something missing in all of this, it suggests, there is something more…We listen and we are aware of – a sigh. And under the sigh is something dangerous, something that feels adulterous and disloyal to the religion we are serving. We sense a passion deep within; it feels reckless, wild.” John Eldridge, The Sacred Romance

After weeks, more like months, of waking up early, only to roll over and go back to sleep, it took a prompting during a table discussion at a men’s bible study to start this journey. But that calling had been here for a while, and I kept silencing the voice that was calling out for I felt I was doing enough and the best I could with everything that has happened and continues to happen. But there is more. More in me, and more God wants out of me so I can better understand Him and where this journey is taking me and my family.

We stick out – not because we have a child with special needs, but because our lives are being pulled in a completely different direction than everyone else. People notice us, follow our journey and struggles, share with us their struggles, and find comfort in knowing they don’t have to put on a mask or front when they communicate with us. There is a rawness, a realness to our struggles that everyone can relate to only because we are being faithful and honest with expressing what we are going through. I pray we can continue to do this – free from arrogance or pride. There is nothing arrogant or prideful about being a parent to a special needs child, only overwhelming love and joy to watch her tackle her struggles head on as if there was nothing standing in her way – and to her, there is nothing there.

Reagan standing with bauer

For that, I am proud. I pray we can have faith like that, one that can move mountains. “Let the light of your face shine upon us, O Lord.”

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The Nurse that Changed Everything

When we were in the hospital with Reagan, we had the most amazing nurse, I’m going to call her Kate.

Kate had the most incredible demeanor. She was calm, always smiling and confident, she was the exact opposite of how we were feeling.

After Reagan’s metabolic crisis, Kate helped us set up a conference meeting with everyone working on Reagan’s case including the Dr. on the floor, another Dr. who was basically in charge of the children’s hospital, our genetics Dr., the hospital social worker and the neurologist. The purpose of the meeting was to ask all our questions about our daughter Reagan’s new diagnosis (which was complete basal ganglia damage and loss of all her skills up to 13 months due to a metabolic crisis) and to discuss what we were supposed to do now in caring for her and what we could expect moving forward. We had three pages of questions. Kate is the one who watched Reagan during that tough meeting.

Kate would take Reagan on walks around the hospital floor and rock her to sleep when we went to the Ronald McDonald house.  I’d call Kate first thing in the morning to see how the night went.

One morning, Kate took Reagan to a staff meeting with all the nurses, the Dr. and the resident so she could be with people.  So when Rob and I walked over from the Ronald McDonald house one morning at 6:30 a.m. and couldn’t find Reagan, or any nurses…we walked the floor (slightly panicked). I saw Reagan’s stroller peeking out of the cracked conference room door, the same conference room we were in just a few days ago asking all our questions. While we were grieving over a new diagnosis, Kate was helping us with our hope.

I asked Kate if there was any way we could give Reagan a bath…not with hospital bath wipes, but a real bath. As I wondered logistically how a bath in a hospital bed would work, Kate burst into action and knew exactly what to do, how to keep Reagan warm, how to keep the bed mainly dry…it was amazing. When Kate wasn’t working, I asked another nurse to bathe her…I ended up taking over, Kate just knew how to do it best.

Kate also got us a bigger (private) room with a private bathroom, closer to the nurses station. When you’ve been living at the hospital for about three weeks, this is a HUGE deal.

Not only was Kate the most incredible nurse, we just loved talking with her. We told her all about our dog Bauer at home and how Reagan was probably missing him. She told us that we could bring our dog to the hospital…what a game changer. Kate provided us with the necessary hospital paperwork to get him up the elevators past security, and our neighbor took him to the vet for any shots he was due and to the groomer.  When Reagan laid eyes on Bauer, it was the first she smiled in more than a week.

Bauer and Reagan2

And, it was the first time we saw actual life spring from her body since being admitted for her crisis. She cooed, she made sounds, she smiled, she had a little laugh. She was in Heaven. Bauer stayed for several hours and I truly think he provided a link for Reagan to cling on to. She remembered him, she knew that she had tons of love from us, from our dog; we would do anything for Reagan.

Reagan Smile

Bauer and Reagan1

Our dog and our daughter have a connection. Bauer makes her laugh, he’s soft, he’s furry, he’s friendly and he’s exactly what everyone needed. Because of Kate, our healing was able to begin. We didn’t know it then, but looking back, it’s obvious to see.

Reagan and Bauer

After we were discharged from the hospital, we connected with Kate on FaceBook and she followed along with our journey. We were mentally exhausted and she saw a need. She offered to babysit Reagan out of the blue, so that we could have a break. Wow! A PICU nurse is willing to babysit? The first time she came we asked, “So how often does this happen?” Her response, “How often do you want this to happen?” Not realizing that what we were really asking was how often does a PICU nurse actually come back to babysit a patient? Not often, we all surmised.

That first date night Rob and I pulled out of the driveway and just looked at each other and said, “this is crazy!” We were driving away, leaving Reagan with someone we had only really interacted with at the hospital. But we weren’t leaving Reagan with just anyone…we were leaving her with Kate. The Kate that loved on our daughter, our family and the parade of people who came to visit during our hospital stay. Reagan was with Kate and Reagan would be more than OK, she would be great.

Kate has watched Reagan many times since and Reagan just loves her. Kate is more than comfortable administering medication, using Reagan’s Gtube for her feedings, bathing her (in a real bath tub) and putting her to sleep. She’s even taught us tricks to help her go to sleep.

Rob and I couldn’t figure why Kate would want to do this, for us, for Reagan. We came to the conclusion that she’s just one of the most amazing human beings out there. She told me that she felt a connection to Reagan in the hospital, and that when she saw her reaction to Bauer, she knew Reagan would be OK. We are so thankful to have Kate in our lives and will always be forever grateful to her.