I joined my mom for a scrapbooking date this Saturday at a local crop. (Yes, they still happen, no, scrapping isn’t dead yet!) I’ll admit the last couple of times I have attended I didn’t get anything done- just sat and stared and pushed the paper around. The muse was not there. This time, however, things were hopping. I got these five done (the Coppelia is a two pager) and could have kept going well into the night. My fingers are itching to finish the others that were in my head from Saturday—and we won’t talk about how very long it has been since that has happened! Years! It is a great feeling- I’ve missed this aspect of myself quite a bit. All the pictures are from at least two years ago, sometimes earlier than that. If anything has changed since I first started scrapping, I have definitely learned to date or put an age somewhere on the page- when I look back at older work, I’m really hard pressed to figure out when it was and have to look for clues in the background photos. Save yourself some consternation later!
I finished another Garter Stitch Cowl in Grey last night for my husband. (Here’s mine from this summer.) This was an extremely fast knit this time- literally the fastest I’ve ever completed a project to date- from Sunday afternoon to Tuesday evening. I think what is most gratifying about this one is that there are no mistakes. When I made one I was able to figure out how to fix it without frogging, or caught it quickly enough to only have to frog a few stitches. The one visible mistake I made (an extra purl row) I was going to go back and fix, but my husband liked the way it looked and asked for another line another third of the way up. It gives it a delightfully chunky ribbed look.
I finished both The Bronte Sisters: The Brief Lives of Charlotte, Emily, and Anne and Glimmerglass: A Novel in the last few weeks. I liked the quick read about the Bronte sisters- I had read Jane Eyre previously and was curious to know more about these authoress sisters and this book was a great introduction. (So many author biographies can get scholarly and dry!) Glimmerglass was introduced to me via a reading/book signing back in the fall. The portion she read aloud absolutely whet my appetite to find out what happened next, but I was too broke at the time to buy a copy. I finally found it at the library last month. It’s a lovely fairy tale of a book with a mystery or two. She has such a lyrical voice…it’s a very falling down the rabbit hole sort of book. The twist will surprise and delight you and scare you by turns.
Sharing with Ginny.
On the tail end of all the crazy, President’s Day happened. Daddy was home. The morning, at first, was pretty lovely. And then- our hard working washer exploded, spewing hot water and clothes throughout the kitchen, laundry room, and dining room. It was bad. Bad, bad, bad. (It’s all repaired now.) But instead of having a much needed break and a chance to re-connect and sort through all that has happened, we spent all day dealing with the mess and repair. You know how disappointed I was, don’t you? We all went to bed a bit sad and out of sorts.
When we woke up the next morning, the world had been transformed outside our door. The storm had dropped at least eight inches of snow. This gift happened.
Now it has been nearly a week, this string of snow days. Such a desperately needed vacation. We’ve all had a chance to catch up on sleep. We’ve watched movies and drawn and colored and painted- we’ve played games- we’ve curled up on couches and read to our hearts content. We’ve made snow cream (with sprinkles!) and endless cups of hot chocolate. We’ve reconnected as a family and found that we still like each other. We all feel like we can take on the world again. Such a sweet blessing- even if we were without hot water for most of it. The water heater busted on day one of the storm. Hey, the family that smells together, stays together, am I right?
It’s gonna be a bumpy road, I know. But I feel like we’re ready for it again.
Ellianna’s numbers finally started to bump up at this last transfusion. Her tests for genetic blood disorders came back negative. We’ve now ruled out cancer and blood disorders, and the doctors do think we have gotten to the bottom of her medical issues and there aren’t any other issues lurking below the surface now. Only time will tell. The running theory is that she was just so sick and depleted that, as the iron goes, it’s taking an extended time for her body to heal and take on the iron properly. She’ll continue receiving them until the docs feel comfortable. It’s truly in a wait and watch mode now. Ben was identified for speech issues (at 12!) and will start therapies in the next month. (Trust your gut, mamas! You’re usually right!) Lorelei was diagnosed with developmental reading disorder (alexia or dyslexia), so a whole new world of understanding that and helping her is ahead. The good news was with Josiah- the gastroenterologist felt very happy and confident with the progress that Josiah has made and that the treatments are working for him, so that was very welcome news. I think we all feel better knowing where we’re at and where we are headed now. No more test results hanging over our heads and tormenting us with ‘what-ifs’.
Now if you’ll excuse me, I have to make some more snow cream and hot chocolate!
What a difference a year makes. This time last year she was quiet and a bit under the weather…she’d been running fevers…soon she was in the hospital. And now, here we are. You’ll agree with me that hearing her laugh and talk and get excited about her presents truly felt like a miraculous gift? We still don’t know what the future holds for her. Her third transfusion will happen on Wednesday, and we will find out the results of the new tests that were run. But for today? We laugh and kiss her and enjoying hearing all the noise a four year old can generate!
It has been an interesting few weeks for us. A lot of catch-as-catch-can, a lot of frantically pulling from the freezer, drinking cold coffee, and barely getting to notice the beautiful light streaming in the living room window.
As you are reading this, I will be sitting in a hospital treatment room with my youngest daughter. If it weren’t for the bare-headed young cancer patient receiving chemotherapy and playing right across from Ellianna as she plays, I could almost forget how roller-coaster last year was, and how that gregarious boy could have been my sweet imp of a girl. I can almost forget how nightmarish the whole hospital trip was for us, and the months afterwards of unsolved mysteries and continuing illness and weight loss, the tests that were finally run when no other answers remained, the heavy bricks of a possible cancer diagnosis weighing down on our hearts until the tests came back negative for cancer but positive for Celiac disease… As it is, we’re still not quite out of the woods. I’ll know today if her body is responding to the treatment for her anemia. If it isn’t, we’ll have another round of testing and questioning and roller-coaster-ing all over again. So far the results have been pretty mixed. The bottom line, regardless, is that she will have an autoimmune disease for the rest of her life. This is the new normal.
In the last two weeks, I’ve had another child flat-out fail his yearly hearing test, only to discover (after a week of ‘oh my goodness what now?’ tension) that extensive earwax buildup had led to the inability to hear. This, from my Sensory Processing Disorder son, who didn’t (or couldn’t) communicate to me that his ears were bothering him. A week’s treatment for removal led to clear ears and crystal clear hearing. His peds says this will probably be a quarterly thing we’ll need to do to keep his ears okay- a genetic thing from his dad- but the thing that makes me wonder is what else this kid has been trying to tell me about his life that I haven’t understood. A new normal.
My eldest son was referred to speech therapy in the same two week stretch. Now I tell ya, I’ve been concerned about it for a while. But we mamas, sometimes we don’t trust what we know, so I convinced myself it was all in my head and surely it was a phase. I was pretty sure it had gotten worse, but again I questioned my authority as the foremost expert on my kid. Not five minutes into his yearly physical/ well-child, his pediatrician stopped the exam and began to converse with my son in a purposeful way, testing his communication. I could barely understand my son, and the pediatrician couldn’t make out a word. An immediate referral was issued and we’ll begin that journey in two weeks time.
On Monday, we will meet with my youngest son’s gastroenterologist to decide what new treatment (if any) will be the next step forward with his GI issues. As it stands, his GI issues have no end or cure or at the moment. We are absolutely shooting in the dark. A new normal.
Somewhere in the next two weeks, test results will come back on my eldest daughter, who we think may have some form of dyslexia or other learning disorder, and who has struggled mightily to learn to read and write and is working far below grade level in those areas. It’s not so much that we didn’t know that something was wrong- it is just that these tests will tell us what is wrong. This in turn will lead to other things, including any therapy she may need in physical, visual, occupational or physical arenas. A new normal.
As it stands, only one of my children, my smack in the middle kid, my middle son, is the only one of the group with no health or developmental issues. Out of six children. Given my statistical odds, I should go play the lottery.
I don’t say any of this to garner sympathy or invite pity. I say this to illustrate the season of life I am in. This is my day to day. This has been my day to day for some time.
I realized when talking to a young mom whose child had just been diagnosed with Sensory Processing Disorder just how far my ‘normal’, had changed. I remembered in talking to her the overwhelming feelings Z’s diagnosis brought on- and also the relief that my child’s struggles had a name. I had somehow forgotten the near endless rounds of therapy he endured across years, four to five days a week for hours, that led to the Z of today, who quite frankly blows the socks off of all he meets. He is a hilarious, extremely smart, gifted kid….who happens to have Sensory Processing Disorder. But the SPD no longer defines every aspect of his life because of all his hard work in years of therapy.
Those years I spent shuttling back and forth, struggling to keep my other kids’ lives normal as we dealt with endless appointments and endless therapies. Those years I thought I’d never survive. Not only have we survived them, we’ve taken all those lessons from those years of adjusting and shifting and shuffling to define what our new normal looks like today.
As overwhelming as these crazy weeks have been, they are just that: crazy weeks, and they will pass. And we’ll have a new normal. Again. The only thing that is consistent about our lives is all the change we deal with. And I know from way back when that no matter what comes down the pike for us, we’ll find our way through. We might have to stop and grieve for a while. We might have to ignore the diagnosis for a time and have fun anyways. We might have to make adjustments here and there.
Heaven knows it will all be prayed over, extensively, and not just by us but a whole constellation of witnesses- our priests, our family, our friends, our sweet child in heaven. Because if there is one thing I know in this season, it is how much we are loved. We don’t ever walk alone.
I have been deeply, deeply blessed by my friend, Mary Lenaburg, who wrote through the Home-going of her daughter, Courtney. As things began to move closer to Courtney’s death, she began tagging her photos on Instagram with #lovealwayswins. There is just so much wrapped up in that little statement. The day that Courtney died, I held it together reading Mary’s words until I came to the end and read the hashtag. It was then that tears began to flow in earnest. Listening to Mary in her journey has fundamentally changed my own.
It’s that little phrase that echoes across my days of change. The answers may be positive or negative. The changes may stretch us farther than we thought we could handle. Ellianna could get healthier or she may not. The fact remains that our God is a gracious and loving God. Whatever comes from His hand, He will give us the strength to endure. No matter what happens next, #lovealwayswins. The best I can do is to love well and leave the rest in the hands of Someone much stronger than I.