So I will admit, maybe this blog post would be more fitting as a newsletter, but since I do not have a newsletter and the thoughts of creating one exhaust me, instead I’m writing this post. So hi! I’ve missed you all!!
I feel like it’s been forever since I’ve had the time to sit and write. Life here, has been insane and overwhelming; even for 2020. I have to admit, I feel a little rusty as I sit to draft.
I just took my second Prednisone of the day, day five of a 12 day steroid blast. It comes as no surprise that the events of the last several weeks/months equated to a flare I just couldn’t pull out of. This time around, my Achilles were newly involved and so painful, I was having difficulty walking. It’s always interesting to have a whole new body part involved in a flare….ones you never give any thought to or consider might give you trouble. I wish I could compare it to the prize at the bottom of a Cracker Jack Box, but somehow, it’s never that exciting. Needless to say, the Prednisone has enabled me to walk again and while, as always, I’m not pain free, I’m at least off the couch for part of the day again.
SO…..let’s get into the good stuff and what landed me in a flare, because that’s actually way more fun to talk about.
For those of you who weren’t aware, my Eldest Son, 23 was very seriously hurt on June 29th. So much so, he had to move back home with us (and his Dad part time) and was unable to use his hands or arms. After fighting with Workman’s Comp and his Employer, he was finally operated on 3 1/2 weeks later. While all of us are used to suffering, it’s an entirely different thing to watch your child be so seriously hurt and to struggle SO much to get them appropriate care. I think the scariest thing of all of this, was my fear his injuries would lead to a life like mine. After ten years of FightingwithFibro, I’ve gotten pretty darn good at inferring the meaning of what Doctors say, even when they don’t say something outright. So it was not missed when the Surgeon told us that he hoped to be able to give my Son “a few good years of functionality” in his hands. While I never discussed what I knew that to mean with my Son, we knew that meant a grim prognosis and when it comes to your hands, a grim prognosis is catastrophic. Emotionally, I was killed to think of my Son as possibly struggling with Disability. Especially at only 23.
It was a couple of months of endlessly hiding in the bathroom to cry, watching my Son struggle and his inability to manage the most rudimentary tasks of eating, drinking or dressing. Almost three months out, I couldn’t be any more grateful for the genius Surgeon that put my Humpty Dumpty back together again. While initially stating he hoped to buy him a few years of function, the Surgeon is now saying that he should regain function. Albeit, probably not until approaching Christmas time. It has been a crazy, bittersweet experience to swell with emotion and gratitude at watching my Son pick up a fork or take a drink on his own. It’s like reliving his toddler years all over again. We still have months of twice weekly Occupational and Physical Therapy appointments (an hour away) to attend and a still very long road to recovery. I am just thankful that that recovery will come for him. As for his scars, well, those don’t have quite as fantastic an outlook…with all due respect, they are a little gruesome. However, they’re a beautiful reminder of a terrible experience and the miracle of overcoming it.
While ALL of this was going on, my Daughter and her Fiance had planned and canceled three weddings due to the pandemic and the calamity surrounding rescheduling with all the vendors. So when the third cancellation came, they told us they were just going to go ahead and get married. Now I may be sick and spend alot of my life on the couch, BUT, that stubborn streak within me is still going strong. Not one to be easily defeated, we came up with a better plan. We decided to run away, immediate family only and have a tiny wedding, instead. With all the kids had sacrificed, it just seemed a shame they didn’t get any semblance of the wedding they were so close to.
SO, we threw out tradition, eliminated all our vendors and rushed to find a wedding dress that could arrive in time for their new nuptials. As an added precaution, we got a little wild and crazy and I became an Ordained Minister. We decided that if we were going to do this, there was NO way we were going to plan it a fourth time and not have it happen. Becoming a Minister meant that even if we did it on a Wednesday, in the kitchen, that these two kids were getting hitched. And along the way, a couple of unbelievable things happened…..we found a homeowner, willing to rent to us, her home overlooking the ocean and our original Photographer agreed to drive down to still photograph the wedding.
I am SO happy to say that my Daughter Caitlin and her Husband were married, overlooking the Atlantic on August 30th. It certainly wasn’t what they (or any of us) planned and it was a very bittersweet occasion to be missing most of the important people in our lives; those we love the most. But the day turned out to be absolutely perfect and accomplished what had really been the goal all along; saying “I Do”. As it turned out, many people were relieved we canceled, due to the Coronavirus. While everyone certainly wanted to be there, many people were very nervous or conflicted to do so and doing it the way we did, meant everyone stayed safe and no one felt they would be disappointing the kids to say “no”.
It was one of the most humbling experiences of my life, to become an Ordained Minister and to have not only the responsibility of writing the kids’ wedding ceremony, but also to have the incredible honor of marrying them. I’m not sure I have ever seen a more beautiful Bride, in my life, than my Daughter. I have posted more of the wedding photos on my Facebook page, you can find them here, if you would like: https://www.facebook.com/FightingwithFibro
In the coming weeks, the kids hope to be able to surprise my Parents and Aunt by dressing up and surprising them at their Assisted Living Facility.
As life starts to, hopefully, slow down just a little, I hope to be able to return to blogging more regularly. As you now know, I have been pretty preoccupied in the last couple of months and trying hard to conserve energy I don’t have.
Once again, I want to take time to sincerely thank all of you. Your comments, emails, tweets, messages and texts of love and support kept me going through some truly challenging times. It never ceases to amaze or humble me, to have so much support from so many people. I want you to know that I felt the love, strength and prayers that you all extended.
As I close and read over my post, please let it serve as a reminder of how strong we ALL are. Despite our illnesses, despite our challenges, despite FightingWithFibro and the endless struggle of living a live that can sometimes be considered diminished, look at ALL we still have.
I will still cry my way through the pain, lash out in anger over my limitations, occasionally be depressed and constantly filled with anxiety. However, I will also never forget still having the strength and courage to fight for my Son or the privilege of marrying my own child and witnessing that marriage. For as much as we live with, as much as we suffer; happiness, joy, gratitude and fulfillment are still possible. This is why we fight.
Looking forward to getting back to you all. Much Love <3 Stace