Today was a weird day. I lost perspective. It happens.
Jonah not eating is driving me crazy. My Mommy Gut is telling me that it's just a control issue and that he's just being difficult. I don't think it's physical. I don't think he hurts. He just WANTS. TO. HAVE. CONTROL. I have no idea where he gets that from. Ahem.
I cannot believe we went from him eating two to six ounces of solids in the last couple of weeks to not even eating ONE bite. Every single time I think he's figured it out or we're over a certain hurdle, we always backslide. ALWAYS. It is exhausting, frustrating, and it really, really, really makes me want to cuss... which I've done today but I'll withhold from all you innocent bystanders. You're welcome.
THEN, we finally got out of the house after two long tube feedings, bath, dressing change, morning nap, and a pee-all-over-the-place-and-through-two-layers-of-leg-bandages incident to go to ... the pharmacy. Yeah, I know. We are really living it up over here. So we go to the pharmacy, and I had to go in because I needed some over-the-counter things, and this older lady is staring us down. She came right up on us (like, NO personal space whatsoever) and asked what happened to him. So I explained about EB and she sort of acted really skeptical. And then she said (wait for it...):
"I bet a lot of people look at him and think you've done really bad things to him."
(MOUTH AGAPE)
I said (very sweetly), "Yeah, I know he looks pretty bad. You wouldn't believe the mean stares we get."
What I wanted to say was, "Bad Word You, Lady. If I didn't already worry and wonder if that's what people thought, I know it's the truth now. Thanks for making it so clear. DO YOU KNOW WHAT I'VE BEEN THROUGH TODAY?!"
And I KNOW (seriously, I know) that she's just kind of lost her filter and that she wasn't trying to be mean or hateful or even insensitive. I'm not mad about it (anymore). I guess, more than anything, it just confirms to me my worst fear... that (some) people think I AM THE CAUSE for all his pain. I can't tell you how sad that makes me. Many EB families have been turned into Social Services. I know that people think they are doing the right thing. But it is such a heavy, emotional thing to be accused (even if only in someone's head) of child abuse when you give your heart and soul and literally ALL of your time to care for your hurting child. Twist that knife real good, whydontcha?
(And yes, I know I need to get little cards made up. It's on my list.)
But then I went to my friend's jewelry party (she makes BEAUTIFUL stuff), bought myself a pair of earrings, turned on Country on the way home and belted out Any Man of Mine like my life depended on it, and I'm feeling much better now. Thankyouverymuch.
Going to watch Friday Night Lights, head straight to bed, and sleep up to regain perspective. Nothing like seven hours of staring at the backs of your eyelids to help put things back in focus. I love you, sleep. You never let me down.
35 comments:
I'm so sorry you had to deal with such an insensitive and frankly, rude person today. Hope you get some good sleep and feel better tomorrow. You're a wonderful mom! I also wanted to say that all toddlers have eating phases. Sometimes they eat everything, then the next week all the favorites are disgusting and refused. Yes, they are learning control!
It really is unfortunate that people are so.. so.. stupid. I have a situation of my own with a child of mine and although no one has come right out and said it, I do feel that they blame me. I would really be crushed to hear the words though.
Big hugs, Patrice. I am sorry that you had to hear that. You are a great mommy and you are doing a wonderful job with your baby boy.
This makes me want to vomit. (Sorry for the gusher reference.) I can't even imagine the pain and disgust you must feel after an encounter like this. Geez. I can't even imagine.
Just in case I forget to tell you when I talk with you next...Walgreen's is now letting you get OTC things through the drive-thru. At least the one in Greenville was doing it when we were there last weekend.
Love you!
P.S. I had to delete my last comment because of a misspelling. It's late. I'm tired.
Many people really do not have a filter or think before they speak. If only they knew or realized everything your sweet family has been through. You have a ton of folks online praying for you and rooting for you every day. Sending hugs your way!
Karla
What a hard thing to deal with. Honestly, I feel guilty because I never even thought of you having to deal with that. I am so sorry - I don't know what else to say except that. We are thinking of you. I hope you have a wonderful night's sleep!!!
Is that what happens...they lose their filter, like they lose their hearing and eye sight? Is there a specialist to help them regain it or some type of aids that would bring back the filter even a little?! My grandmother is the worst!!
I'm sure you are trying EVERYTHING with the feeding but can I throw in my 2 cents. Granted I have a 2 1/2 year old who will only eat 3 foods and drink Pedisure but we have tried lots of tricks so maybe one will work out better for you!
1. Asa always has to have a spoon and container of his own. It is best if it is the same type of container like yogurt for yogurt and applesauce for applesauce. Oh and it is empty but he doesn't seem to mind that part!
2. We taught Asa to "kiss" food first. You get to act all silly and kiss it yourself so it is alot of fun if you are out at a restaurant. At some point food becomes more friendly and you might can slip a bite or two in!
I have a few others but I bet you are tired of unsolicited advice so I'll stop there! You can visit Asa's page to see how he progressed to "kissing" toast tonight! I know, lofty goals, right!
Hugs to Jonah!!
One day I want to be as grown up as you are. See, I totally would have said BLANK you, Lady! Then I probably would have several other choice things to say to her.
I always think back and wonder if I was young now, how many times would DFAC be at my house investigating my parents. I can't image having to raise a child with EB and then to have a government agency show up to see what kind of parent I am! I mean SERIOUSLY!
I am so sorry that you had to go through that today!
I'm so sorry you have to go through so much and put up with the public when are finally able to get out. You are a STRONG woman! As a nurse, I am generally curious when I see things out of the ordinary and I try not to stare and definitely try to be sensitive IF I ask any questions. But some people have no tact.
Anyway, I wanted to comment because today I saw the most beautiful little boy at walmart and he had light blonde hair (semi long but not mulletish) and gorgeous blue eyes and he looked so much like Jonah. He was probably about 4 years old and just adorable. I can't wait to see a 4 year old Jonah! And a 14, and a 24 and a 34... you know - if he lets you blog about him when he's that old. ;)
i just love your honesty...really, you bring a smile to my face because you handle all this so gracefully. and i'm sure sometimes you think you don't but YOU DO! and its amazing....
and i love even more that you are raising awareness about EB...i'm ashamed to admit i had never heard of it til your blog...you are doing such wonderful things!
and i pray jonah starts eating more.....((hugs)) to you!
Patrice, So sorry that you had a rough day yesterday. Some people can be very insensitive when they are ignorant about the situation you are in. An EB awareness card sounds like a good idea. It's sad that you have to worry about that but at the same time it might help more people to be aware of the illness and possibly lead to more interest in research and a cure :)I have a seven month old daughter, Anna, at home and I am praying for you and other EB families out there. Thanks for your blog so that we can follow Jonah's progress and for your candidness about how you feel. Wishing you all the best.
Laura Valetutto
aw sweetie.......i'm proud that you didn't punch that lady and or even "rough talk" her (although a walking stick jab and a firm "ghiiiiit" might have done the trick.) why the why don't people mind their own??? sort of funny story though.
hang in there. :)
Cheez. That thought never entered my mind. I don't even think he has the look of abuse at all! You reacted way better than I would have, that's for sure! I'm so sorry for all the crap you have to put up with girl. Will be praying for you extra today.
So sorry that you had to deal with an ignorant lady. I don't think I would have been so nice. I can't believe how rude people can be.
You are an amazing Mommy and please don't let rude people get you down.
Praying that the eating gets better, and it will. Take care guys, and give Jonah a gentle hug for me. Love you guys. Love Leah's Nana
Oh, Patrice...
As a part of Lucy's post surgery recovery we had to stick metal rods up her doctor-created anus (she was born without one) every day for 6 months, to keep it open.
I felt like the worst abusive mother, crying while i did it, wondering who could come up with this sort of twisted way of "keeping your kid healthy."
we have to catheterize her every 4 hours every day, and she has to have enemas through a port in her belly button. i know people think those things...esepcailly when she was suffering from failure to thrive last year because the doctort we had seen told us not to feed her things that would contain fiber and make her go to the bathroom too much. it's complicated, but let me tell you the looks we got when we brought in this gray-looking, skinny kid into a restaurant. NICE.
It's hard. It is really, really hard. And to have the guilt on top of all you yourself have been through, all he's been through, yeah.
You were far nicer than I think I might have been. :)
And seriously, reading your blog yesterday about adoption just stopped me in my tracks. I've been praying fervently for "Signs".
**chills**
Patrice,
I have read your blog for over a year now and have only commented a few times. I am also a high school Spanish teacher and love your 'Spanish' posts. You amaze me with your honesty, humor and unbelievable care for Jonah! I am so sorry with what you had to deal with today, just not okay. Cheering you on in Oklahoma and hoping for easier days ahead!
Take care,
Courtney Connelly
You are such a strong woman to be able to treat others with grace when they so clearly lack a filter. You blessed that woman in the pharmacy.
About the eating and control thing. Something that helps my guy eat and have control over something is to put a few cheerios or crackers or something he can "do" on the tray while I feed him. I completely understand the lack of eating due to control. When my husband deployed, my son (8 months) gave up eating solids entirely and didn't pick it up again until about 13 months. Giving him some utensils and crackers/cereal seemed to help.
It's one thing to think it, it's a whole other thing to actually say it out loud.
I work in foster care and everyday I work with children whose parents HAVE done horrible things to them, and honestly, if I saw you and Jonah or a child like Jonah (since I would recognize Jonah), I would assume that he had a medical condition, because there is no way if a parent caused a child to be covered in bandages that they would have custody of them (or walking around in public running errands).
As for the food thing, there is a comedian who actually jokes about the pathological need parents have to just make.their.children.eat. My daughter is a typical kid and I've been known to nearly lose my temper when she refuses to eat. The harder I pushed, the more she refused. I've learned to let go of the control, it's one of the few things she truly has control over. Of course, it still stressed me out.
Sorry you had such a tough day yesterday. But it sounds like it was the perfect day for you to buy jewelry! It was so good to see you last night, too:)
It makes me so embarassed to be from WS to hear such things! I think one amazing thing about your blog having reached so many people is there are so many now who will think first before making cruel assumptions about a child (or any person) who looks different from them. I have a daughter who is six weeks older than Jonah and she loves to see the pictures of Jonah and Gabe and say "baby! baby!" over and over again. I think this blog has made me a better mom because it may not have occured to me to be sure to show Natalie pictures regularly of all different babies and toddlers as early as possible and talk about the cute and silly things they are doing (she likes to laugh with videos of Jonah laughing - thinks he is quite a card :) and how they are just like her. And help her understand the nuances of sensitivity and empathy as early as she can comprehend such life lessons - so that she never becomes one day that person in a store making ignorant assumptions and accusations. I hope that Natalie's toddler years include many playdates with different people - there are few things that would make me feel more successful as a mother than if Natalie grows up understanding that "normal" is relative, and that "weird" is normal (not to mention beautiful and endearing if you ask me. Love your kid!). Bless her heart, with her dad and me as her unquestionably dorky parents, Natalie has no choice but to love, understand, embrace, and appreciate the differences in all people :) Anyway, not great with words, so sorry for the lengthy ramble - If you come to Raleigh (or when we are in Clemmons visiting my parents) would love to get Natalie and Jonah together and truly appreciate how dang cute they are - weirdness, pickiness, uniqueness, tantrum-throwing rotteness (okay, that might just be my child with the rotten streak a mile wide) and all. I think they would be great friends. You have a hilarious sense of humor (and though I don't remember Matt from high school, from your blog I get the impression that he does too) - so of course Jonah will probably be the most entertaining little (well, this is a Christian blog so we will just say "smart-tooshie" ha! :) I can just imagine when he is seven or eight years old and some (we will say "meaniehead") who lives under a rock says something ignorant, he will have a list of sarcastic and hilarious responses a mile long for every dense insinuation or cringe-inducing questions he hears. All of that to say - thank you for Jonah's story, it has made me a better mom.
~Kimberly (Randolph) Waller
Just a thought, but if you think it is a control issue, have you tried putting him in control and allowing him to feed himself? Give him the spoon, or just use his hands, whatever, but give him the food and walk away, or sit down nearby and eat something yourself. Don't react in any way no matter what he does...Keep it very low key.
My mouth dropped when I read your tweet....I felt so terrible! Too bad she hasn't learned to keep to herself in her old age, hey?
Hope Jonah gets back to his little piggy eating ways...SOON!
People are so ignorant! I shall add this story to the long list of stupid things people have said to parents of children with special needs. I try to remember, note I said try because it's easier said than done, when I hear hurtful comments that it's a reflection about the person speaking them and nothing about me.
As for the eating thing, what if you just dropped it for a bit? I know that sounds insane, "drop eating" but drop oral eating for a day or so and see how it goes. My logic is that this will take you out of the power struggle entirely. You aren't really saying, "OK Jonah you win" instead you are just going to avoid the topic (by not bring out the spoon) and see if maybe he's ready to change his mind on his own. I like this tactic for things we can't MAKE kids do.. if he was acting like this because he didn't want to pick up his toys, I'd say hand over hand make him do it until he learns. But you can't really shove the food down his throat.. so the only way to "win" this "power struggle" is not to play. What do you think? If nothing else, it might give you a break from the battle, too. I know that you'll find a way to get through this.. you are a wonderful, wonderful momma!
Hey. I'm sorry you had to go through that. I once heard a woman tell he daughter,"Look at that baby. It makes you wonder what she did to him." at the dr. office. Thankfully, my other kids were there so I didn't burst into tears, but I know that knife in the heart,stomach dropping feeling. I hate that Jonah and your family has to go through the pain of EB. On a brighter note, things will be better soon, right! The BMTs will cure EB and all of our sweet kids can have their life back. :) Praying for you everyday, Jennifer
praying for you!! so sorry for the insensitivity of others....your words make me double mindful to watch my words. You never know the burdens others are bearing.
Patrice: You don't owe any explanation to anyone. You know the truth and better yet God knows the truth.
You live for an "audience of ONE"
And we all know Jesus is well pleased . . .
I'm gonna drop kick that old lady and flush her dentures down the toilet.
That really breaks my heart...in half...I'm so sorry people can be so rude and insensitive...she was being that way and I would have wanted to slap her myself. God bless you for your strength and you are a GREAT mom and don't let anyone tell you differently. Big hugs to you and thank you for being you!
Blog surfing this morning and found myself spending some time with you and your beautiful family. I had to share my shock over the comment that this lady at the store made to you. Unbelievable! It makes me so sad that our values are so backwards. I understand about not having a filter, but this somehow feels so different.
I hope that you have a wonderful fathers day.
Dear Patrice & Jonah,
Do you have the mean ladies' address? I want to kick her in the teeth. Love, Ashley
Haha Seriously, what a hag! You did an amazing job biting your tongue, but, you know what... I think it might be better for your sanity if you just told people, "That is very inappropriate of you to say!" I mean... ugh! Did you see/hear about the EB special that was on Nat Geo? Extraordinary Humans.
Lady must have been BLIND! Did she miss the HAPPY, HEALTHY, SMILING little boy with you?!
Good for your for being the better person...not sure I could have been :/
Sorry that yo had to experience that lady that didn't know when to keep her mouth shut when you were already having a such a rough day. UGH! Hope you enjoyed Friday; night lights. I love that show!!!
Give Jonah hugs.
Hugs and PRayers
Rachel in TN
oh my. I am good friends with Melissa, Luke's Mommy...and frankly...I don't know how ya'll can hold your tongue when people say such things?!?! I couldn't even be nice to a woman who accused me of not putting sunscreen on my little guy's face (it's just eczema). What a testament you are!!! I might be a little biased, since I have one myself...but your little blondie, blue eyed boy is so stinkin cute! :)
I just want you to know that I read your blog and truelly enjoy it. My seven year old has started reading along with me (well I read and she listens). She did ask what happened to him but never has she thought you would have hurt him.
My son has a picking disorder. Instead of cutting he picks so his legs look they have been attacked by infected mosquitos. a man actually stopped and questioned us about it in BK yesturday
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