Category Archives: when kids won’t sleep

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Breathe. This Too Shall Pass. Just Breathe.

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10…. Breathe. Just breathe. This too shall pass. O is having one of his run from authority screaming in an effort to avoid any work or responsibility. I will play some of this off as his way of dealing with the stress of the move. I wish he wouldn’t teak K to jump on the couches and chairs or run down the stairs with hand prints on both walls as he steadies himself between each jump. Dear Lord, will he ever stop screaming that high pitched squeal of excitement.

9…. Breathe. This too shall pass. Just breathe. A will not always stay awake all night to be in a rotten mood. She will have to sleep at some point, right? Maybe…She explained her sleeplessness as feeling like the dogs in a thunderstorm. Even if she has never had anything bad happen while she slept, the fear is real, and it is inhibiting her sleep. Last week, we gave up and went to bed with her still up. At 3:30, she came and woke me to help her get in bed with her dog. She had stayed up drawing by flash light.

8… Breathe. Just breathe. This too shall pass. K is a bright cheerful light. She laughs as wind touches her face. She cheerfully accepts any thing she can. She imitates her siblings to our chagrin and emulates O’s hyper activity intent to out screech him. She wants to miss nothing in life, and she wants to be with her siblings at all times even as they teach her things they get in trouble for doing.

7 …. Breathe. This too shall pass. Just breathe. My staff of 7 from a year ago has lost 4 of the employees and is likely to lose another. Out new upper management change has driven many of the best employees to look elsewhere for employment. All the while we enter the 5th year of our 5 year cycle. The most complex processing lies directly in front of us with little time to train new employees and not enough employees to do the job without the added brain power. Miss deadlines? I hate failing to deliver.

6… Breathe. Just breathe. This too shall pass. We bought a house! We have our stuff in the new house if now put away. I feel like I live in my car going between Walmart and Lowes to get this and that followed by returning this and that to correct the sizes.

5… Breathe. This too shall pass. Just breathe. With stress comes pain in the head and muscles, foggy brain time, and ever more mistakes. The amount of rework time needed is insane.

4… Breathe. Just breathe. This too shall pass. A’s has slow motility. I wonder if she knows what it is to have an empty stomach. We have tried medicines aplenty. We are having some luck with juicing, but it is an abominably labor in tense process for us to get juice pulp free using a food processor and a strainer to get juice which will go through her g-tube. This too shall pass? That’s the idea!

3… Breathe. This too shall pass. Just breathe. My heroine, J, has done so much of the move. She has coordinated, planned, carried and strained. I have always called her my Wonder Woman. How she keeps going is incredible. I feel so guilty unable to help more. Sure, I can watch the kids and carry the really heavy items, but I haven’t the energy to go 14 hours a day as she has for the past few weeks.

2… Breath. Just breathe. This too shall pass. One of the hardest parts of MS is the helpless feeling I should be able to do more. As I get stressed, I still expect my mind and body to perform as normal. I have had varying levels of pain for year, so why should it matter now? I have been a project manager for 8 years. Work stress comes and goes, so why am I unable to perform as well as ever. Then, the fear of failing again feeds into a feeling of downward spiral. Why? It’s a matter of faith this too shall pass, and recovery is near.

1… Breathe. This too shall pass. Just breathe. We have tried for years to teach our kids the magic calming of counting either up or down with each breath. I find myself resorting to this method ever more often. Calm is out of sight but just around the corner, right?

Happy Thanksgiving!

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Exercise for the sick, family time, family vacation, MS, MS progression, MS travel, Multiple Sclerosis, Tysabri, Uncategorized, when kids won't sleep

Double Rainbow Days

On some days, a single rainbow just doesn't say enough. This day ordered a double.
On some days, a single rainbow just doesn’t say enough. This day ordered a double.

This past week, my family and I went to Jamaica, to FDR which is our favorite family resort (for what it worth, TripAdviser.com has had them as the top family destination in Jamaica for years). For a family with medically fragile children, this place is a life line. Their nannies take excellent care of the medical and non medical children, and the resort is the perfect size. It’s big enough the parents can do things without the kids and small enough parents and kids can find each other whenever needed. We went last year, and we could not wait to get back this year. It’s the land of double rainbows where the pots of gold are smiles and free moments with spouses.

We were a little worried when the passport request for K was denied 12 days before we were to leave. However, the Maryland Department Social Services (DSS) office in Baltimore city came through in spades. We called our worker when we got the package returned to us Saturday. Sunday she came to our house and picked up the package. Monday afternoon, she brought the package back to us with the requested paperwork signed by a judge and notarized and other paperwork approved by DSS lawyers to meet the requirements of the State Department’s letter refusing the first application. For all many rightly bemoan bureaucracy, Baltimore DSS did well by us to get the passport reapplication accomplished quickly.

When I look back, I cringe thinking how much K would have missed out. She had her own nanny on the trip, and she thrived. People were amazed after the first day whenever we said she had problems seeing. We all watched as the first day we had to tell her “step” whenever there was one upcoming, but she quickly memorized the place and took off. She loved the pools, the beach, and even the water-slide. Watching her go from scared of sand to crying whenever it was time to go back to the room was a joy. I have never seen her so happy.

As for the rest of us, we got what we wanted too. Whether it was A getting a group of adults (the nannies) to play Parcheesi, O getting to hunt hermit crabs and play Foosball, or J and I getting to have quiet dinners alone to reconnect, we all got a much needed break.

That’s not to say there weren’t bumps along the way. When are there not? I can not for the life of me explain why A loved the water slide on alternating days with fear being the dominant emotion every other day. I still have no idea from where our kids drew their limitless energy rejecting sleep half the nights there.

However, the good days were so good, and the ability to rest and relax let me enjoy physical activity levels I have not had in years. When a day can start pushing K on a 5k run through the hills followed by a longer bike ride after breakfast, then some thing is going well. To have both of those things not tire me out for the rest of the days activities is an awesome testament to the value of the workouts I do most days at work and the efficacy of Tysabri thus far in controlling the physical symptom progression of my MS.

I liked our date dinners on pier. J and I rarely get time to go out alone. Thank you FDR.
I liked our date dinners on pier. J and I rarely get time to go out alone. Thank you FDR.

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