Friday, July 7, 2017

Walking on the Path of Uncertainty

Yesterday I received some difficult news at a doctor visit. I have routine eye exams because plaquenil, the medication I take to keep my lupus in check, can cause some rare and irreversible eye damage. These eye checks are meant to catch any problems quickly before they become too severe. The ophthalmologist asked me how long I had taken plaquenil and when I told her that I have taken it for 13 years, she got very serious. While I currently have good vision and she isn't seeing any negative effects, she said the risk of eye damage was much greater after being on the medication for so long. She was going to recommend to my rheumatologist that I stop taking plaquenil and start other treatments.

This is very disturbing news as plaquenil has allowed me to lead a very healthy, normal, active life for the last thirteen years. In fact, lupus patients who take plaquenil long-term show better health and life outcomes. They live longer and experience lupus much less severely than patients who don't take plaquenil. Additionally, other lupus treatments, like prednisone or immune suppressants have much worse side effects and problems than plaquenil. The current recommendation is to have regular eye exams and stop treatment if any problems are noticed.

This leaves me in quite a quandry and anticipating a very important conversation with my rheumatologist. I don't want to stop taking plaquenil nor do I want any vision problems. I am not certain what the future holds and I feel worried what will happen.

While pondering this today, I felt impressed to listen to a talk from the podcast BYU speeches. I came across the talk, "Waiting upon the Lord: The Antidote to Uncertainty," by Dr. Erin Holmes.  It was just what I needed to hear. It reminded me that I am not walking this path alone, that God is with me, and that there are lessons to be learned in this time.

Thursday, June 22, 2017

An update

It has been a long while since I posted on my blog; I will get to that in a bit with whatever piecemeal explanation I can give. My heart and body have been begging me to write and I have started at least a half dozen posts and deleted them all. Words come out haltingly and stuttered, meanings are half-uttered, and I falter, unable to continue. I am starting to get back to the point of wanting to cry all the time, for no apparent reason, so my body tells me it must come out, imperfect and ridiculous as it is.

Last summer the bottom of our world kind of dropped out. I found myself fighting an uncomfortable depression and while trying to cope, things happened in my family. I can't go into specifics because they involve others and I must respect their privacy. What I can say that it probably isn't as dark or as awful as you might be imagining, but neither was it exactly rosy. It took my husband and I a few months to sort of grasp what was happening and since then we have been on this mad dash to find help and a cure, if you will. As we have faced challenges in our immediate family unit, tragedies of various degrees have struck our siblings and their children. All this to say that we have been through a lot of hurting.

I can say that it has been, without  a doubt, the worst school year we have ever experienced, individually and collectively. I have spent more time on the phone with school staff and have been on the receiving end of an incredible amount of support and help. My husband and I have spent more hours and days than we would care to searching for solutions and help in our community. We have tried different things, all with varying degrees of success and failure, but mostly failure.

I didn't want to write about any of this until it was over, done, finished, we made it through this trial, but such isn't the case. I have no idea how long this will continue or if it will ever end. I am not comfortable or great with uncertainty, even though I understand, intellectually, that is often the total sum of human experience.

So in the midst of this trial/challenge/life experience that I am being so vague about it, it is maddening, we have also experienced miracles in the moments we most desperately needed them. Miracles from talking to the right person who could give us help and advice, peace after a violent storm, kindness from friends, prayers answered. I started taking yoga and exercising at a gym, which has helped with the stress and tension.

So there you go. I'm not sure what else to say nor if I achieved anything with this, but I feel a little better, so there is that.

Thursday, February 23, 2017

Rooted and Restless

Yesterday my husband and I closed the deal on a new window set for our living room and two sliding glass doors for our kitchen and study. While feeling trepidation about the cost (windows are expensive) we knew the work needed to be done. I awoke this morning thinking about the new windows and the cost.

My back deck and backyard a week ago after a big snowstorm.

My Facebook and Instagram feeds this morning were full of exciting and beautiful pictures. One friend is currently on a pilgrimage in India. My cousin shared a witty anecdote about backpacks and the differing personalities between she and her husband as they navigate life in Sri Lanka. Another friend who currently lives in Prague was visiting Dubai with her husband and shared beautiful pictures of the skyline there. As I looked at those pictures, I felt deeply envious. I know the rush that comes from trying to figure out a challenge in a foreign country. I know the awe one feels when encountering ancient and exquisite architecture. I know how alive I feel when living in a new country and how fascinating it is to learn about that new country and culture.

A view of Caeaserea in Israel from the amphitheater. This was one of the most interesting places I have ever visited.

Suddenly my window purchase felt boring, mundane, and settled. For what we just promised to pay, we could have easily made the trip to Sweden that we have been longing to take for several years. The conflicting parts of my personality raged up and clashed. We bought our home three and a half years ago after years of dreaming and hoping about home ownership. I get a happy little kick in my heart when I pull up my driveway and park. I have spent hours outside mowing the lawn, raking leaves, weeding flower beds, and tending to our vegetable garden with varying degrees of success. We are trying to set down roots in our community through volunteer projects, school involvement, and meeting new people. My kids are settled in their schools. At the moment, we plan to stay for at least a few more years yet.

My hydrangea bush/tree was out of control with incredible blossoms last summer. The butterflies and bees loved it. It was absolutely magical. 

But there is another part of me anxious and bored, longing for adventure and excitement abroad. It is the part of me that is only partially appeased with trips to the city to explore a museum or a trip upstate. It is the part of me that complains that I haven't gone anywhere or done anything-despite two trips to Wyoming, two trips to Kentucky, a trip to Albany, a few trips up to the Adirondacks,a fun weekend in Cleveland, and a cool little trip to Philadelphia last year. I am traveling plenty. It doesn't help that ten years ago we were living in Israel and five years ago we were in Riyadh. So putting in new windows in comparison with exploring ancient cultures seems kind of lame.

Enjoying the pool in Riyadh. 

I know the antidote to all of this is gratitude, but I want to indulge in a little envious dreaming of foreign climes. I really hope that we get another opportunity to travel and live overseas again.

Do you ever feel torn between two very different lives? How do you negotiate that?

Thursday, January 5, 2017

2016: A Year of Lessons

For the past couple of weeks, I have waffled back and forth whether or not to write a 2016 review post. The latter half of the year was... interesting. December knocked the stuffing out of me and sadly culminated in the passing of my husband's dear nephew. As a family, we have shed many tears this month both individually and collectively. I didn't know what I could write about this year that wasn't overly depressing. Ultimately, I am a chronicler of life, and that includes documenting the difficult as well as the joyful. Of course, I carefully curate what I share online, but I also want to be authentic and it would be disingenuous to gloss over some of the stretching moments we've had. To that end, here is a review of our 2016.

Some years are joyful experiences filled with an endless litany of delights. Other years are filled with growth opportunities, some pleasant and others painful. 2016 was a growth year for our family and in the spirit of sharing wisdom, we would like to present some of the lessons we have learned both collectively and individually.

1) Hard work and effort doesn't always equal "success" but often the journey is more important than the end anyway.

Trent isn't the most athletic kid in our family and yet, he has persisted in joining the wrestling and track teams at his school. He hasn't won a race yet, and more often than not, he gets pinned during his matches, but he continues to keep trying his hardest. He may not be successful in the traditional sense by winning, but I think he is learning more important lessons about endurance, perseverance, and personal effort.

Josef's first love has always been basketball. He joined a city league at the end of 2015 and played on a team that consistently won. Sadly, at the end of the season, his team lost by a point in the championship game. It was a hard blow, but he recovered from the disappointment. In the fall, he joined modified soccer and worked as hard as he could. Soccer isn't the most natural fit for him, but he worked hard regardless. In the winter, he tried out for the modified basketball and came close to making the team, but fell short. Again, I was impressed with Josef's resilience as he dealt with that disappointment.

2) We have to endure what we don't always understand.

Poor Walter has struggled mightily with some unrelenting health challenges. We still don't have answers or relief, but he continues to do the best he can in the situation. I have been less than patient, anxious to find help for him. There are times I am so frustrated with the situation and the lack of answers and relief. I think Walter has been more patient and enduring than I have. I know well from experience that patience and endurance count for a lot and most things don't last forever.

3) Treasure time with family and friends.

This summer we broke from our usual pattern of visits to Wyoming and came over the 4th of July. (Usually we go every two years. Because we visited in 2015, our next visit wasn't slated until 2017, but we broke with tradition and went anyway.) I'm so glad we did. We had a wonderful time with a huge reunion with Brent's family. I saw many of my sisters and my parents. On the way home, we took the long route to see Brent's sister and her youngest son, Tucker, who was recovering from surgery. We also saw my great-uncle Bud at a McDonalds for an hour. I'm so glad we took that detour because that was the last time we saw both Tucker and Uncle Bud. Uncle Bud passed away in November and our sweet Tucker died in December.

My sweet Uncle Bud was quite old and was ready to go home to his wife who had died a few years earlier. He was such a good man and important part of my life. He showed me a lot of love and kindness as I grew up.

The day after our beloved Tucker died, we packed our car and drove three days to Wyoming to be with family for the funeral. It was unbelievably difficult and sorrowful, but being with Brent's family was the most important thing. We mourned together and also held onto the hope of family. Tucker left a legacy of kindness, happiness, joy, and I have resolved to carry that forward in my own life.

3) When life is hard, don't try to get through it alone.

I have been so overwhelmed with all the help we have been given this year. Friends online have reached out to me in private messages, phone calls, and encouraging words when I struggled. Friends brought us dinner when we needed it. When we left, friends took care of our bunnies and cat. School teachers, guidance counselors, school psychologists, and the staff at our pediatric office have done all they could to offer help to our family and offered counsel, advice, and suggestions when we didn't know what to do in certain situations. In times like this, knowing so many people care about us has made a tremendous difference.

4)) Celebrate the triumphs and joys in life--the big and small moments.

Brooke had an amazing year and has continued to develop her talents. She has no fear of performing and performed her role as Annie in the elementary school musical with perfect confidence. It was absolutely delightful watching her on stage singing "Tomorrow". This spring, she has a small role in "Shrek, the Musical".

Jonathan and Brooke did great at their swimming lessons and worked so hard to improve their swimming skills.

We took some delightful trips to Philadelphia, Albany, Connecticut, Wyoming, the Adirondacks, and Kentucky.

Winter and Jonathan still snuggle and love on me and are the cutest kids. And, you could never be as excited about a swimming suit as Winter is.

4) Challenging times don't last forever.

If you are human and have any kind of interaction with other humans, you know that tough times are naturally going to occur. When I was younger, it was hard to see that they would someday end. I'm really happy to have enough experience that I know bad times don't last forever.

Brent has had a tough time at work with a difficult manager and co-workers. He was patient and persevered. This year, he moved to a new group with a much more supportive and helpful manager. His co-workers are interested in teamwork and collaboration instead of back-stabbing competition. He feels like he is really part of a team really trying to work together--they even play ultimate Frisbee a couple times a week at work which makes him really happy.

5) Families can be messy, difficult, and ridiculous and that's ok.

We don't have a perfect family. We fail a lot in our relationships with one another. I fail a lot as a mom. My biggest challenge as a mother is how much I want to control things to make them perfect, but trying to do that just about broke me. So I'm embracing a messier life (and snapchat) as a parent and as a person. Learning to let go is also great because that gives more time to pursue some personal goals. In mid-January, I begin a genealogy certification course online through Boston University. I'm excited for the challenge and the opportunity.

6) Love is everything.

It's cheesy but it is the most true thing I know. The love I have felt from Brent has sustained me this year. He is an amazing man and I couldn't ask for a better partner through this crazy journey of life.

Love for family, friends, neighbors is probably the most powerful tool we have to carry us through in this crazy world. 

My love for God and the love I have felt from Him has probably been the greatest blessing I have experienced this year.

Thanks for letting me share these random, rambling thoughts with you. I hope you have had a good year filled with good things. 

Come what may in 2017, it's going to be alright.