Alternatively titled: Experiences of faith based living from a control-freak, INTJ, large family mother who has a medically fragile child with special needs. And yes, Sunday is the new Friday.
Years ago, one of my ways to deal with life was to imagine the worst case scenario of whatever situation I was in and formulate a plan of how I would manage in that scenario. It made me feel in control, to think that I had escape plans and plan Bs.
Then life started getting good.
The bad thing about life getting good is you have so much more to loose.
When you are a uni student whose most precious possessions are her books, house plants and black nail polish - life is pretty simple. I travelled light - not so much in the practical sense (Hi, my name is Jess, I am a bibliophile and cannot live with less than several times my own body weight in books) but in the relational sense.
I had my work and studies which I loved, but shifting focus was always a possibility.
I had friends, but they were held at a bit of a distance.
Even my family had their own lives, interstate.
Then Jon came along and ruined everything.
I had more invested in my relationship with him than I had ever chosen to invest in any relationship.
Suddenly, the worst case scenario was a whole lot worse.
Then we started having kids, and I had what I had dreamed of all my life, and I had more to lose than I ever thought possible.
It was wonderful and it was awful.
Contemplating worst case scenarios would literally bring me to tears.
When Kaylee was born, I had let go of a lot but I had to reach a whole new level of letting go of control.
Kaylee was born on Thursday morning. By Thursday afternoon/evening she was in intensive care in Launceston. By Friday morning our doctors were trying to work out if she needed to be flown to Melbourne or sent to Hobart to a more fully equipped intensive care unit. Friday night she was flown out to Melbourne on an air ambulance. I could not go with her and the next commercial flight did not leave until the next morning. I realised overnight that I did not have any photo ID. I never got around to getting my driver's license (I don't like driving and love any excuse to stay at home!) and I hadn't flown in years. By the time I was walking up to the airport check-in desk I was physically shaking with fear, terrified they would not let me on the plane without photo ID. Terrified she would die before I could get to her.
Again and again I quoted to myself "You will keep in perfect peace those whose minds are steadfast, because they trust in you." (Isaiah 26:3).
It didn't actually help much.
I was still terrified.
I approached the desk and tremulously garbled "I-need-to-get-on-this-plane-My-baby-is-in-Melblourne-and-she's-less-than-72-hours-old-and-in-ICU-very-sick-and-I-have-no-photo-ID-can-you-please-let-me-on-the-plane-please-is-there-something-we-can-do-about-that-here-I-have-a-credit-card-and-medicare-card-I-have-cards."
The lady at the desk looked confused.
I took a deep breath and painted an attempt at a smile on my face (which I think made her look frightened)
"I have no photo ID. Can I still get on the plane?"
The face of the lady at the desk flooded with sympathy and tears sprung to at least one of our sets of eyes.
"Of course you can get on the plane! We only reserve the right to check ID and we certainly would not keep you from your baby."
I sagged against the desk with relief as she printed my boarding pass and waved to Jon to signal it was OK. He looked similarly relieved.
I was relieved and also frustrated with myself. I had wasted so much energy worrying over this situation and I did not have energy to burn. I had not slept since before Kaylee was born (and would not sleep for another two days) and was wrung out. I knew I needed to take care of my milk supply and keep it together.
I made a resolution that morning as I watched the sun rise over Bass Strait - flying away from my husband and five older children for an unknown span of time - probably weeks and months - toward a fragile baby who was fighting for her life.
I resolved never again to waste so much energy worrying about things that haddn't happened yet.
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And day by day it could change at any moment.
The list of things that could go wrong with Kaylee is long and scary.
There are things we are watching with her health that could take a downward turn without warning and become very scary very quickly or be fine for years, decades or the rest of her life.
Perhaps the experience common amongst those with CdLS which scares me the most is SIB - Self Injuring Behaviour. Before Kaylee's stomach surgery she was in almost constant pain from reflux. She would express this pain by pulling her own hair. She had patches on her head that were bald and bleeding. This is when she was less than 8 months old. I have seen older children and adults with CdLS whose faces are torn, bruised and bloody at their own hands.
There are simply no words to describe how this makes me feel as a parent.
Perhaps I can fool myself that I can protect her from the outside world. But I know in my heart that perhaps one of the hardest and soul destroying challenges we may face is protecting Kaylee from herself.
And there are my other children and the various concerns I have about them, and my husband, and myself, finances, house renovations....the list goes on.
I have an obsessive mind. Once it latches onto something, it is difficult to think about anything else. No matter what I am doing there is a part of my brain teasing it out, worrying it, chewing it over. This can be a good thing, helping me learn and prepare for potential future issues. However it can also cross that line between learning and obsessively worrying. The verse that sustained me "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."(Matthew 6:34) and the experience of that early morning flight are the keystones to my ability not to go quickly insane with worrying.
When my mind latches onto a concern, here is my check-list to differentiate between "constructively exploring a concern" and "worrying" - when I am in the midst it can be surprisingly difficult to tell the difference between the two.
- Am I dealing with any new information or organising the information that I have in a new way? If I am just obsessively going over and over the same old information it is a pointless waste of my limited energy. I have a choice: find new information or new ways of organising the information or move on.
- Will my thoughts lead to new action, plans or insight? Sometimes rearranging the information I have or organising it better can give a real boost to what I am doing and help me make choices that improve our lives or prepare us better for the future - sometimes it is just rearranging the deck chairs on the Titanic. If there is no practical benefit, short or long term, to what I am thinking about, I need to move on.
- Is my attitude toward this issue one of hopelessness and despair or rooted in a knowledge of God's promises, loving kindness and blessing? Romans 8 and Philippians 4 are two other chapters that help me keep an eternal perspective rather than a temporal one. This really needs a post of its own. Even if I am dealing with new information which could lead to new action, plans and insight, if I am still spiralling downward I need to step back, at least for a time. I am of no use if I am in the pit of despair.
- Find today's worry. What is going on right now that I can actually do something about? I need to get into whatever that is rather than obsessing about things I cannot control.
- Do something. Anything. I am not good at down time and tend to be a work-a-holic. I have learned the hard way though, that sometimes I need to disengage from "work" mode (care manager, school teacher, whatever I am stuck on) so I can come back with a fresh perspective. When Kaylee was in hospital I would sometimes go and scrub the parent's kitchen or wipe down her room. I am not a clean freak, but the concentrated effort of cleaning helped distract me from whatever broken record my brain was stuck on and come back with new eyes. Knitting and watching Dr Who, pinning on pintrest, nature journalling, scripture journalling, writing, reading, praying... Whatever will engage my brain and get me out of the rut of worrying for a time.
- Focus on the good for a while. Sometimes when everything seems to be going wrong, it is a worthwhile exercise to spend some time thinking about what is going RIGHT. For me this includes: list writing/writing in a gratitude journal, doing something I enjoy with the kids, spending some time with my husband without discussing "issues"(lovemaking is excellent for this purpose! It is a beautiful way to give thanks for each other), and sessions of thanksgiving prayers "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." (Philippians 4:6,7)
- Worship songs. Like Saul being soothed by the harp of young David, sometimes music makes things better. I can't carry a tune in a basket, but I do find that music can distil things down to what matters, bypassing my logic and cutting though to the heart of the matter. Sometimes I listen to music (Praise You In This Storm, Casting Crowns; Farther Along, Josh Garrels; Tunnel, Third Day; Mountain Top, City Harmonic; ) other times I belt out a few hymns (It is Well With My Soul; What a Friend we have in Jesus; My Hope is Built on Nothing Less; Turn Your Eyes Upon Jesus)
- Get it all down in writing. Sometimes the act of writing it all down gets things into a more manageable form. It gives clear specifics to pray over and a direction to move in. It pushes me from fruitless wheel spinning to moving forward in faith and learning.
- Give myself a time limit to talk about, research and deal with the issue I am worried about. Sometimes, in spite of all my best efforts, I am stuck on a topic and can't budge. So I give myself a day or a week or some period of time to deal with it, journal about it, pray about it, talk it out etc. I do this with the promise to myself that at the end of the given period, I will be DONE with it, at least for a while.
What stopping worrying and stepping out in faith is NOT (at least for me).
- It is not ignoring the things in my life that concern me. Sometimes when I talk about some things that may become an issue in the future, people tell me not to think/talk about it. For me though, monsters in the dark are the scariest type of monsters. There are times that I may have to walk away from a specific issue or concern for a time, but I always know I will come back to it. I may take the time to gather my thoughts, adjust my perspective, choosing not to dwell or have a little break, but I am not running away from the issue. Faith isn't pretending the water can't drown you, it is trusting God that He won't let it.
- It is not believing that bad stuff will never happen. It just does. Stuff hurts and no matter how good the good stuff if, I can't deny that. But a wise Time Lord once said:
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And while many things in life are outside my understanding, nothing is outside God's control. I trust God that His plans for me and they are plans to make me prosper and do good things in my life (Jeremiah 29:11) but sometimes, some of those plans will hurt in the short term.
The trick is not to let bracing yourself for pain which may or may not be in the future consume the present.
- It is not lying to myself or God about what is going on in my heart. I see a lot of Christians who cover their pain with bright clichés and carefully avoid saying anything that might "make God look bad" or make them seem like a bad Christian. I want to take their hands, look deeply in their eyes and tell them sincerely, in a way that they can hear, God is big. He is bigger than your pain and He can take whatever you have to say to Him. Read Psalms. So many of them consist of "God I hate what is happening right now, this is exactly how it makes me feel and I need You". The thing is, the act of being honest with God instead of trying to pretend you are thinking and feeling what you think a Christian SHOULD think and feel - opens the door to a greater closeness with God than you could ever imagine. It is OK to say "I am hurting, it sucks, I'm scared - please help me to trust you and have faith in you.". Sometimes I try and force myself to be OK with things that I am really not OK with and by doing so, I take it out of God's hands and try and fix it myself. This is not faith. Faith is dumping it into God's hands daily (hourly, minutely?) and saying "this is a mess. I know I should be OK with this, this and this but I am not. I don't even want you to change me to be OK with it because that is how much I am NOT OK with this! But I want to want You to change me. That is our starting point Lord." He is big. He can take it from there.
- Believing that nothing can come between God and I without my permission. He said it. "No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord" (Romans 8:37-39)
- Believing that God has my back.