I've been in survival mode lately.
I see people post on Facebok about Lent coming, and about being super excited for Lent and I'll admit, I've kind of wanted to hide under the bed.
You see, I think of Lent and being in the first trimester with morning sickness, while still nursing a kid who started eating solids about three months ago (and thus still nurses a lot) and I find myself spiraling into a sort of overwhelmed wait-isn't-this-Lent-already... isn't the first trimester always kind of like Lent? sort of place that just isn't pretty.
Usually I'm all jazzed up and excited about Lent and Advent and let's-get-these-preparations-for-the-big-party-started... but this year I'm mostly trying really hard not to stare too long in the mirror at what kind of a wimp I feel like right about now.
I should really go back about a month and a half, for this to all make a little more sense (I hope).
These past weeks have been exhausting. I felt like Maggie was slowly slipping away. It wasn't making sense. She would sob when it was time for therapy. She was up again at night. A few times I thought we were going to have to take her to the ER because her tummy troubles were flaring up so severely and she was in so much pain. The teeth grinding had started back up. She'd cry for two to three hours in the afternoon, sobbing inconsolably, not wanting anyone to touch her.
There were bright spots, moments when she'd sing or laugh or tell me that she was a mermaid, but for the most part, I was at my wit's end. I thought we'd found the answer. Gluten and casein were the problems. I'd carefully tested and introduced supplements and vitamins and she'd been thriving. And then suddenly it stopped. It wasn't working any more.
Was that just it? Were the solutions temporary? Had her body gotten used to them? Was she always going to have GI problems?
I wracked my mind trying to pinpoint the problem. I walked around muttering to myself about how she could possibly be getting gluten because this just felt like what she's like when she has gluten, but I just couldn't see how it was happening.
I wondered if I just wasn't handling every day problems as well because of the exhaustion or pregnancy, but really I knew it had to be more than that. I even lost my patience (pregnant Cammie is not nearly as long suffering when people say stupid things) with a therapist who said that the problem was that I give in too easily to her demands, pointing out that as one of three children that absolutely and positively is not reality.
And then I went upstairs to sew while Paul stayed downstairs during therapy and I heard him say "No, no, don't put that in your mouth. It will make you sick." I came charging down the stairs and saw Maggie clutching play dough in her hand and trying to hide behind a chair to eat it.
Play Dough.
It's one of her rewards during therapy and she frequently sneaks tiny bites of it. After seeing her do that Paul picked up a container and saw the small stamped warning.
Did you know that Play Dough (the kind you buy) is made with wheat? I didn't. I knew that the kind we made when my mom was a preschool teacher was made with wheat flour, but that never really reminded me of the sweet smelling packaged stuff and I just didn't make the connection that the stuff they were bringing in and out for therapy day after day wasn't gluten free. Honestly I thought it was some concoction of chemicals... but gluten? The idea that it was wheat never entered my mind.
I felt a little insane, mourning the lost weeks and needless pain she'd gone through while rejoicing that we'd found out what it was.
"That small an amount would effect her?" People asked me incredulously.
Oh my goodness. You have no idea. One bite of breaded fish meant two weeks of hell on earth back in November. Eating Play Dough six days a week was definitely enough to pretty much grind our entire lives to a place of tears and pain.
It's not better yet, but we're getting there. We're three days out and already her digestive problems seem to have eased. She's happier. She's sleeping again and we haven't had tears in the afternoon for two days.
So maybe I will be ready for Lent... or as ready as I ever am, since even when I think I'm ready, it usually turns out that I'm not. The preparation that is Lent is always a challenge, and it's usually not the challenge that I expected to face.
Usually I have a list of dozens of things I want to do and a few I want to give up. Usually it's something dramatic and difficult and time consuming.
This year it will be simpler. Our diets are already extremely restricted (I know it doesn't have to be food, but food is always very, very effective for giving up things since apparently I'm rather food focused). Sure I'll give up something, although this time it may seem small (I'm thinking of giving up soda, which I usually drink when we go out... not a huge part of my life but something I do enjoy when I have it). And I'm resolving to pray more, especially refocusing on daily prayers. Maybe I'll even manage a little more spiritual reading, which will involve slowing down to pick up a book that isn't aimed at the six and under set.
But for the most part I'm just focusing on putting one foot in front of the other and making it to Easter. It may not be glamour or exciting or pin worthy... but it's my plan. And at the moment it feels exactly right for me.
Cam, last year my husband had brain surgery the end of January to remove s metastatic tumor from his brain. That wsd followed by radial surgery 3 days after our grandson was born (the day Pope Benedict resigned. Much of my Lent consisted of driving my husband to and from his office and to and from doctor's appointments 70 miles away. I told my daughter I wasn't adding any extra Lenten sacrifices (we already do meatless Lent except for Sunday. I was instead simply embrace the sacrifices God had put in my life with as much joy as possible. Was it a great Lent? Honestly, I've probably had some that seemed more meaningful. But managing to slip into church to light s candle most every day made it at least feelike I was doing something to help. S year later things seem to be stable and I'm thinking about a more conventional sort of Lent. I do think that sometimed God chooses our sacrifices for us and embracing them is better than simply giving up candy.
ReplyDeleteAs frustrated as it must be to have not noticed that she was eating the play dough, I am so relieved for you that there was a cause. I cannot imagine how stressful it must have been to wonder if there was going to always be GI problems.
ReplyDeleteI am an Eastern Christian, so Lent began for us tonight after Forgiveness Vespers. My priest was speaking in his homily about how the first words of Matins tomorrow is "Fast first from sin". He recommended thinking about ways to fast from things such as thinking of your own importance (ie using smartphones to remaining perpetually connected - you are not so important that you need to know what is going on 24/7), trying to solve problems or think complex thoughts (avoid debates, politics, etc and instead return to living a simple, contemplative inner life), and meditating on the forgiveness of others were good places to start. I don't know if any of that applies to you, but thought I would share if it offered you any inspiration. He also spoke about how the most important part of the Lenten journey is to arrive with joy at the feast of Pascha. Especially given your current struggles and crosses, I think putting one foot in front of the other and still greeting Christ with joy despite all you have been through sounds like a great plan.
Please excuse typos. I'm a less than perfect phone touch screen typist.
ReplyDeleteCam, Mae is so blessed to have two such vigilant parents!
ReplyDeleteIf you don't mind my asking- what are Mae's GI issues and has she always suffered from them?
ReplyDeleteMy daughter is 12 months old and has NEVER slept longer than 2 hours at a time at night... usually she wakes at least once an hour, and is so fitful and restless and uncomfortable at night. We think: maybe tummy troubles? Maybe something I'M eating (she doesn't eat solids, really...) I've done TED a few times, but then we started to suspect that she reacts in some way to oats and rice. ??? So, we're at a loss and maybe your experience with Mae and Patrick could shed some light on my Margot's experiences?
Thank you and God bless.
Hi,
ReplyDeleteI'm a new reader and my daughter is also on the spectrum. I'm so sad that the therapist told you that it is bad to give into your daughter's demands because you have other children. I have two other children also and that is EXACTLY why I'm more apt to give into demands, just to keep some peace in the house, right? If she was an only child and I could totally devote a standoff time with her I would, but I can't. We were just filling out one of those many behavior studies and some of the questions were like how does she respond to change in routine or performing hard tasks and we were like, we don't change the routine and we don't make her do hard tasks. Ah, such a journey.....
Wow....I didn't know play dough had wheat flour in it either: that's good to know! Hope that Mae gets better soon!
ReplyDeleteI went to a Tridentine Mass on Sunday, and the Epistle was St. Paul's famous passage on charity (1 Corinth. 13 - If I speak with the tongues of men, and of angels, but have not charity, I am become as sounding brass, or a tinkling cymbal....) The priest in the homily spoke of Lent, and that our penances, fasting, and charity expiate sin. And he said, if our penances begin to wear on us and we become irritable and aggravated, we should skip them, because if we do penance without charity we may as well not do it at all, citing St. Paul "if I should deliver my body to be burned, and have not charity, it profiteth me nothing." I thought it was great how he worded it.
ReplyDeleteIt really got me to thinking that what I was going to try to do for Lent was, besides spontaneous "fastings" and "penances" (looking for ways to make small daily sacrifices that others won't notice, such as maybe not having a second cup of coffee when I want one, or maybe leaving a parking space close to the door at the grocery store for someone else), I would try to be mindful to do the things I do for others with greater charity in my heart. And I would try to practice greater contrition in my prayers to God. I'm hoping this, with spiritual reading daily, will make it a fruitful season.
I know whatever you do, great or small, given all you have on your plate right now, will be greatly appreciated by Our Lord.
God Bless. ~ Bonnie
So glad you found out what was up with Mae. Hopefully things will begin to move in a positive direction again.
S- I was so afraid that I was going to forget to come back and respond. Mae's main GI problems involve constipation that will last (with laxatives and magnesium and probiotics) around 8 days, which is of course super excruciating. With Patrick exposure to dairy always results in being up most of the night too (which also happens with Mae, especially in the 3-5 am window). I don't know if that helps at all, but I know that we've definitely seen a correlation between what both of them eat and how they sleep at night.
ReplyDeleteEC- I'm crazy about our schedule! I mean, schedules are such a key to stability and that is definitely big with a lot of these kids!
ReplyDelete