I cannot believe it has already been a year since last Thanksgiving. And what a year it has been...
This year, we said goodbye to my grandmother, a beautiful woman and integral part of our family. Her passing is something I am still working through, as I miss her every day.
We also said goodbye to my sister and nephew as they moved back to Colorado. They have been a huge part of our world since the boys were in Kindergarten, even living next door for the past few years. Those who know us, know that Mike and I love our nephew like our own. Watching that moving truck drive away brought a feeling of loss that cut so deep.
And then there were the events of last Thanksgiving, when life was just, well, turned upside down. As we drove to the ER with a very sick daughter Thanksgiving morning, we had no way of knowing that everything had changed for Natalie and our family in an instant. We had no idea that the next 6+ months would be a roller coaster, complete with countless doctor visits, lab tests, procedures, hospitalizations, and illness. Worse yet, we could not have predicted how much we would see our daughter fade away, and how hard we would be praying, wondering if we would ever really get her back. We watched her transform from a vibrant, spontaneous, fearless, and carefree extrovert into a fearful, quiet, overcautious, anxious, and very ill introvert. I felt as if I lost my child - she was there, but it was not her. It was as if she shell of her former self. And no one knew how to help her. Doctor after doctor, test after test, remedy after remedy - and no results. No change, no real hope provided by any of them - things just kept getting progressively worse. We heard everything from brain tumor, to leukemia, to autoimmune disorder to it’s all in her head, an anxiety issue. We heard doctor after doctor tell us that there was no condition with her combination of symptoms. We were unaware that we, as parents, would have to fight on her behalf to get her the care she needed, and defend her to those who would dismiss her condition as “in her head” or “over-dramatized”, due to ignorance. We would have never guessed that we would be the ones to “diagnose” her, bringing our findings to the doctors. We had no way of knowing that it would be a long process, taking almost a full year to get her to the place that could provide us with a formal diagnosis, treatment plan, and education about not only her, but genetic issues within our family. We had no idea how much we were going to realize all we take for granted every day as we began to celebrate all the little milestones that Natalie met on the road back to recovering her old self.
We also had no clue how much we would learn through this, and how much we would actually gain from this whole experience and all that this last year entailed. When you are faced with challenges, you have a choice to make. Do you embrace the role of victim, view your circumstances as unjust and just give up or wallow? OR, do you meet the challenges “head on” with boldness, seeing them as an opportunity to learn and grow - knowing that God is with you in all things.
I cannot say that I never crumbled or had my victim moments. I had my meltdowns, my night spent sobbing on the bathroom floor when everything was crashing in. I was quite sure that night would end with me in a straight jacket, but thankfully, I made it out without restraints. But even though there were times of desperation, we knew that God was with us, and we just needed to take things step by step and “keep swimming”.
So many amazing things came out of this year. I am thankful for the countless things I have learned and the growth I have seen in my whole family.
Among many other things, I learned....
... that I take a lot for granted. I don’t appreciate the small miracles and blessings I have in my life each day. I am blessed to be able to get out of bed, go to work, have my kids go to school, run to the store on a whim, go see a movie, and be able to take my family out as I please to do things. None of these are a given nor are they a right - they are blessings that can disappear at any time.
...that there is something beautiful about not being able to say “yes” to making plans to do things and just having time together. I have a new found appreciation for being home with my family and spending time away from the busyness. It’s important for our family to connect. I want to make sure our lives are balanced, with plenty of downtime together. I coined the phrase “I have ideas, not plans” during this whole ordeal because we really didn’t know what circumstances each day would bring. It was one of the most frustrating things for me to deal with - it was also one of the most freeing once I embraced it.
...that I need to correct some of what I have taught my kids about the almighty word, “NO”. When I get a response of “Why?” to my parental “No”, I have tried to say “because I said so” as infrequently as possible, but it does slip out from time to time. I am even more convicted that I don’t want my kids to ever accept “because I said so” as a response. I also want them to know that while “no means no” in most cases, there are exceptions. Throughout this last year, all we heard were forms of “No” from doctors and insurance companies. Had we just accepted this, we would never be where we are today - Natalie would never have come so far. There is a time to accept “no” and then there is a time to challenge it. Teaching this to my kids is going to be a challenge because the black and white is now grey, but I am committed to it. “Because I said so” is never going to teach them anything. I want them to ask why. I want them to fight for understanding. I want them to stand up for themselves or others when it is appropriate. Even if the answer is still “no” in the end, I want them to know they did their part to stand up for what is right.
...that I need to remember that just because someone looks okay, doesn’t mean they are. People are walking around with physical or emotional conditions every day and may not show any outward signs. It is not my place to judge the significance of their situation. My job is to love and encourage them - the end.
...that being helpless is both the worst and best place to be. Helpless is how I felt in ALL circumstances for much of this year because that is what I was - helpless. I hated it. There was nothing I could do to save my grandmother, keep my nephew here, or fix my daughter’s health. Nothing except...rely on God. At the end of the day, that is all we had and really all we needed. Realizing that in the midst of everything turned the feelings of helplessness into peace within the storm, and allowed us to see God working in everything. When I look back on this year, God guided each and every step of the way. We ended up with the best doctors for Natalie, had amazing support, and found answers that many families wait years to uncover. I got to have wonderful times with my grandmother, including our last couple of hours together that were somehow perfectly carved out the day before she died. Mike and I got to see the power of “we” as we partnered through the chaos. God was ever present. Had I not been so helpless, I wonder would I have really noticed?
....that joy can be found in every journey. If there is one thing my family is good at, it is finding joy and laughter even in the midst of trials. As Miley Cyrus sings, life is what you make it. We choose to bring the fun to the “funk” of whatever comes our way and refuse to just wallow in the circumstance. I am thankful for every day we have had, pleasant and painful, this year. As a family, and individuals, we are all better for having taken this journey together.
