Rollercoaster of Love

Mitchell’s recent urinalysis and kidney ultrasound tests returned a normal result. Just as Chris suspected! Mitchell’s neurologist and GI exchanged emails on his case, both citing their areas of expertise not being the cause of Mitchell’s discomfort, yet offering concern. Again…they just don’t know.

Next on the tour of medicine is our trip to the Cleveland Clinic August 16-19 and a 24 hour study with admittance into Children’s Hospital planned for September 15. G-tube surgery still is expected, temporarily scheduled for September 10 – a 2nd date planned for this that doesn’t work for us since we’ll just be getting back from vacation and Chris has plans out of town that weekend.

I have to admit, we are on an emotional rollercoaster. During the downs, we have medical and caregiver fatigue. Uncertainty consumes. There is sadness. During these times we tend toward the practical, may sound matter-of-fact, even insensitive. At times like this, if Mitchell is content, we let him linger in his gait trainer or bouncer rather than pushing him through exercises and forcing therapy time. We just need a break. I’m sure this is normal, even if not often admitted. If you didn’t give yourself an okay to pause, how could you endure and cope long term?

A lot of times on this ride, you feel like you are cranking up a big hill. You anticipate a great high and exhilaration of the rush of the big downhill ahead. There are activities to keep you busy – the plans of regularly scheduled days or to-dos following a good doctor’s appointment at which you felt like you were on to something that might just possibly crack the Mitchell code. What if this will go away? There is hope.

Then there are the thrills of fast turns and wind in your hair. There is a sign of something not been done before. Could be increased ability to weight bear or rolling from back to front.
Maybe times when you swear he knows what you are saying or that he somehow looked right at you. Frankly, trips to this Kings Island are few and far between. But that’s the way life is sometimes. We want the big excitement, rather than appreciating the mundane. We are thankful there are so many highs in our life brought to us through Luke. His casual acceptance and need to include Mitchell is inspiring.

I hugged Mitchell hard last night. I can be low down, exhausted, stressed, disappointed…but on the rollercoaster that is Mitchell, I ALWAYS LOVE HIM. He is precious. He provides the gift of perspective. He makes me authentic so much so that I can share that I’m pissed our family life isn’t what I wanted.

I want to be loved this way. I want to be received in spite of my faults, sins and inconsistencies. Guess what...I am.

"Don't bargain with God. Be direct. Ask for what you need. This isn't a cat-and-mouse, hide-and-seek game we're in. If your child asks for bread, do you trick him with sawdust? If he asks for fish, do you scare him with a live snake on his plate? As bad as you are, you wouldn't think of such a thing. You're at least decent to your own children. So don't you think the God who conceived you in love will be even better?” Matthew 7: 7-11 (The Message)

“I trust in God's unfailing love for ever and ever.” Psalm 52:8 (NIV)