All's Quiet on the Western Front

 Our life has more than its share of crises. In fact, we spent the entire first five years of Maggie’s life in crisis mode. There have been hundreds of crises since then too, and we have fretted and cried, wondered and feared the outcome.  So far, we have weathered the storms.

We do not live in crisis mode every day anymore, which is good. A crisis is, by definition, an emergency and it takes precedence over all other issues in your life.  You just have to get through it and hope and pray for a positive outcome and deal with the fallout later. We see others dealing with crisis and understand the fear and exhaustion, even if the circumstances are different.  

When one has experienced crisis as often as we have, you learn to enjoy the quieter days. Our day to day life is a busy one with issues and activities very different from those of most people. It is always different and often difficult, but we have adapted to it well.  Periodically we have to make adjustments to “normalize the abnormal.”   Sometimes those adjustments have ripple effects financially, emotionally or socially.  We just figure it out and marshal on. C’est la vie.

In times like these, when our biggest “crisis” of the week is the Christmas tree falling over, I have to stop and be thankful for all that is going right.  It’s December 15^th, Christmas is coming, Maggie is healthy, the boys are doing well and will both be here next week..

All is calm, all is bright.  

Splashdown!

have returned to earth after yesterday’s trip into orbit. The reimbursement check was ready this morning and I went straight to the bank and waited for the teller I know best and she agreed the funds would be available tomorrow so I can pay the nurses. Often times, because the reimbursement amount is significant, the bank holds the check for several days. I have been assured that sufficient funds will clear so that I can make payroll tomorrow. I am relieved, but still fuming. I do not like to be reminded how close we live to the edge.

Maggie’s health remains in question. She made it “all day” at school today. (Note: The summer school ends at noon.) I did get two calls from the nurse because of different things coming out of various tubes. Individually none of them is particularly bad news; collectively, however, they demonstrate Maggie is likely fighting off a bug. I hope that she can make it the last couple of days at summer school. We then have. about five weeks to get her tuned up and back to fighting form.

During the school break, we are trying to schedule a couple of exams under anesthesia. Actually, it would be two exams, by two different specialists, but one anesthesia. That is better for Maggie, but it is difficult to schedule two very busy pediatric specialists for the same day. It will happen, though. Once they look around her lungs and her gut, we may have a better idea why certain symptoms keep happening as they do. If nothing else, it will give Maggie something to write about for her “What I did on my summer vacation” essay.

I need to finish a project because I’m not sure how I will be able to work once she gets out of school. I have been reviewing and gathering ideas for a couple of weeks . I waanted to work on it all week, but yesterday was lost. I really hope there's no more drama with her services because I can't afford to waste any more time.

I have to power through. Maggie better cooperate and stay healthy for the next 72 hours!

Step Away from the Edge, Ma'am

I talked to Maggie’s teacher yesterday about this and that. In the course of the conversation, he told me that Maggie was being measured for her cap and gown for graduation. She’s the only 8th grader in her class, so she’s the only one from that room graduating. I will receive information about options for ordering. Will it be cap and gown or just gown? If cap, do we want it with or without tassle, etc.

I told him that the cap would be a complete waste of money for her because it will never work with the headrest on her wheelchair and, in any event, Maggie will be tossing that cap long before they ever walk (or roll) down the aisle. But I still want it to get pictures. Joe reminded me that he and his staff do have a bit of experience with kids in wheelchairs who don’t like to wear hats. Right, I said, and then there’s Maggie. We both laughed. [She flings things far across the room.]

This conversation took place while I was parking to go to an appointment. I hung up the phone and walked down the street toward my destination. I felt a smile growing across my face and had to stop and let the whole feeling wash over me. Maggie is graduating and heading to high school. Wow!

Milestones are exciting for every parent, in fact, probably more exciting than they are for the kids. But milestones for Maggie pack an especially sweet punch. She has been through so much. A lot of her life has been on the edge of the precipice. But we have pulled back from that edge lately. She is stable and healthy.

And I don’t think I appreciated that fully until that moment on the street all by myself.
The maintenance of her health is non stop and all encompassing. Her care requires 24 hour vigilance. But we are doing it, she is thriving. And that is precisely why we do it.

Mark your calendars. There will be a graduation party.

Happy New Year

I cannot believe this year is over. And what a year it has been. The country changed: the economy collapsed and we made a historic choice electing our new president. My household changed too.

With both boys away at school, the dynamic of the household changed. Poor Maggie stuck here with just her old parents. It took us a while to get into a new rhythm, and we are still tweaking it. Just as we seem to achieve it, they come back and we start over again. Maybe that is the rhythm.

Maggie’s overall health changed too. My love/hate relationship with her trach continues. It is very difficult to maintain her trach and I am tethered to her by the length of a suction cord; but the proper care keeps her healthier. Yes, she has been on antibiotics for 6 weeks now, but we can handle it here.

Maggie is almost 15 and 2008 is the only year of Maggie’s life that she stayed out of the hospital. She has had healthy years in the past but has never gone an entire year out of the hospital. In 2007, Maggie was an inpatient for at least 60 days. In 2008 – zero. That is remarkable. We had lots of outpatient stuff, but that doesn’t count. She slept in her own bed every single night of 2008.

The nursing situation changed as well. More responsibility falls on my shoulders. I have to find, hire and fire the nurses that care for Maggie. I have to pay them myself and then seek reimbursement from the state. It is a ton more work, but we have had much more reliable shift coverage since then. Her nurses love her and take good care of her.

In addition, in 2008 I started writing this. It is very cathartic for me. I have *met* so many new people because of this and I appreciate all the support and feedback I get from all of you.
Happy New Year everyone.