I was going through old pictures last night, reliving Springs and Easters of years gone by. In the midst of it all, I came across these photos:
They're from a year ago. I remember I took them because I was so thrilled at the time that I had gotten Finn to eat some avocado - he actually seemed to like it (not that you can tell from the picture!). I'm sure I thought at the time that we were well on our way to all manner of table foods.
I felt really, really sad seeing these pictures last night. A whole year has passed since then and guess what: Finn still only eats pureed baby food. Table foods? Yeah, right. Oh, he'll scrounge the occasional Goldfish cracker discarded on the floor by one of his sibs, and he'll sometimes even manage to get it into his mouth. Sometimes he'll suck it till it's soft and mushy and swallow it, but he's as likely as not to gag till he's red in the face and hurl whatever's in his tummy. Sometimes I can get him to take a few bites of a cheese omelette or some oatmeal, or a bit of cookie placed strategically between gum and cheek. But other than that, it's strictly baby food and mama milk.
What I'm getting at is that there has been very little progress over the last year in the way of eating. I know that with time - lots and lots of time - and therapy, and perseverance, he will eventually eat regular table foods (. . . right?).
It's the struggle that's getting me down. The fact that NOTHING comes easily for Finn. I mean, this is not news, it's not a revelation or an epiphany. But for some reason, that picture of the avocado? It was like a slap in the face. Here we are, an entire year later, still eating baby food. He doesn't even like avocado anymore!
I try very hard to just live in the moment with Finn, to not look too far ahead and wonder and worry, to just appreciate what is now. And most of the time, it really isn't too hard to do that. I try hard not to make comparisons. That's a little harder. When you have as many kids as I do, it's hard not to make comparisons. But I try not to dwell on those comparisons, and usually it's not too hard not to dwell.
I've said a thousand times that I don't care when Finn walks. And most of the time that's true, I really don't care. Until I see pictures of what my other kids were doing when they were the same age Finn is now. Until I hear about other babies - babies with Down syndrome! - who are around Finn's age and doing more than he's doing. And every day I'm noticing a little more how much harder it's getting to lug around a 22-pound creeping-up-on-two-year-old.
And then I remind myself that how soon Finn walks, or accomplishes anything else - has no bearing on how far he will go in life. It has no bearing on his capacity for love and happiness, and it is not a barometer of our parenting.
I feel guilty even admitting that I have these feelings sometimes. In my eyes, the sun rises and sets on Finn - I mean that with all my heart. But sometimes this is hard. Sometimes it hurts my heart. Sometimes it makes me sad.
11 comments:
I understand Lisa...I totally understand...so I too just try to live in the moment...and enjoy it all!
I get extremely down about Yusef's progress or lack thereof. I haven't mastered the live in the moment thing yet, but do try to remind myself that he's a happy kid with lots of love surrounding him.
Hey, it WILL happen, and when it does you'll soon forget what all the fuss was about. With Luke approaching 2 (bday was in Jan) I felt despondent that he would never walk. I had been confident that he was on track to walk by 2, and it didn't look likely. Nothing much was happening. Then suddenly something changed, and now he is walking lots. Now looking back it seems silly I was so worried about it. I'm trying to learn not to worry, but it's not always easy.
I just wanted to comment about the waiting part. My son is 14 years old and he didn't walk until he was 2 1/2. I was a young mother and most of my friends had young children. It was so hard when Elijah didn't reach his milestones like they did. Funny thing is though, no one ever asks me now how old he was when he walked. Once the goal is accomplished, no one cares how long it took. I remember worrying about when he was going to be potty trained and when he'd ride his bike. He does all of those things and no one asks how old he was when he started. I wasted so much time worrying that I didn't get to enjoy every moment. We are so proud of the young man he's become. Those goals will happen for you and you will be so proud.
(I don't blog yet, but we have an old website at www.elijah.net)
Lisa,I know Cullen having Autism is different than Finn having Down Syndrome but I can so relate to these same issues. I was just looking at old pictures of all of the kids the other day and it was hard for so many reasons. Even when Cullen makes progress I have hard time feeling happy for long because something or someone reminds me of how far behind he really is. It can just be a simple trip to Target that does me in. I have to take a step back and just look at him and realize it's all ok. (((HUGS))) Alyson
So agree with your sentiments here. I do so well not comparing Eon to typical kids, but watch out if there's a kid with Ds doing more than he is!!! How warped is that?!
Oh, and, Pam, PLEASE start blogging already! We need your words of wisdom!
I feel, feel, feel your pain. I feel like every day is a losing battle with food. He puts finger food in his mouth and spits it out. Anything on a spoon is rejected. We go to OT for oral motor every week. It gets me down too - so much.
In addition, we don't have the benefit of breastfeeding. I hate the reminder every three days when I run all the bottles in the dishwasher that we are STILL doing this... not to mention the cost every other month when I order 2 cases of formula. We should be done with this by now. Why aren't we done with this by now?
I take comfort in our annual Down syndrome family group picnics where I see all the older kids eating food. I figure some day E will eat too and try to tell myself to take a deep breath and not worry about it. Most days I fail. Then I remember the very sweet 3 year old we met at our local DS Assn pancake breakfast who was fed exclusively by GI tube. And then I take another deep breath.
I will admit, though, that from now on, when I'm struggling to get him to eat something, anything, it will help me to know that I'm not the only one. (And if you choose to think the same too in a similar situation... know that I'm sending you positive food vibes.) - Jen
Just sending you a big big hug...
Finn is loved and protected and being raised in a wonderful environment. I don't know what more he - or you! - -could ask for, in the big picture. A friend sent me a quote once: "The most important thing she'd learned over the years was that there was no way to be a perfect mother and a million ways to be a good one." ~ Jill Churchill. And Finn is being as good as he possibly can, too. :)
Just got back from attending a family function with my 30 year old cousin with DS. Twice during the function, she handed her plate of pastries to me and told me to say it was mine if her mother asked! I don't remember if my cousin struggled to eat as a toddler- what I do know is that once she started, my cousin hasn't stopped. Her friends with DS all love to eat.
So one day, you too will face likely have to rein Finn in and will wonder why you ever worried about him eating! Hang in there and continue to enjoy Finn.
I wanted to add to all of the comments that it will happen. I remember going to McDonald's playland with a group of moms and their kids with Ds. I think Morgan was almost 3 years old. I was amazed to watch her friend (same age) eat chicken nuggets and fries--not just eat them but chew them. Morgan was still sucking on most of her food at that time and not chewing. It's funny cuz I thought I'd never forget when she reached certain milestones but I have. I don't remember when she started to chew her food but she did and she is a great eater. She honestly eats everything and has a very healthy diet. Broccoli is one of her favorites. I know it's frustrating during the moment but just know he WILL get it. When He's ready.
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