Yes. Yes, it is.
Lisa has been there from the get-go, in the NICU, and so she knows. It really is always something. And then when she started to crack jokes about my crazy life, and her crazy life, all I could think was thank God I have friends who get me. Because then I could laugh and take a break from worrying that the Scarlet Fever would cause the Pork Lo Maniac to go blind like Mary on Little House.
The thing is, there is no food at the snack bar my children aren't allergic to, and that place doesn't let me bring a cooler in. The thing is, we're having asthma flares and there's nowhere for me to plug in the nebulizer. The thing is, we're busy having a panic attack. The thing is, the other day a plane flew overhead and the sound triggered some weird auditory processing problem and now we just can't leave the house this week. The thing is, we're all stark raving mad and can't function in the outside world. Sorry. Other than that, we'd love to go.
Today is the first day of school. The Pork Lo Maniac and Cookie are going into fourth grade. The Peanut Butter Kid is starting first. Little Dude is going to full-day preschool, in a special program arranged just for him during a two-hour Individualized Education Program (IEP) meeting last week.
Lately my normal weirdness is starting to feel weirder than usual. Obviously, nothing about the IEP is "normal." That's why they call it the Individualized Education Program. They have to individualize it for the things. The thing is, I'm bringing diapers into an elementary school. Another thing is that he can't tuck his shirt in, and at this school, tucking in your shirt is the key to learning. I hope nobody gives him crap about it because I don't want to have to go back into another IEP meeting just yet. I can't handle that much fun in such a short period of time.
Today I should be bringing them all to school and then crying in the parking lot. But I'm not. I'm bringing them all to school, filing papers to arrange for homebound schooling for the Peanut Butter Kid, and then bringing the PBK home with me. She's sad enough about that without me crying about leaving my youngest in full-day preschool.
The thing is, she has some health issues that have brought us to the point where she can't go to school. It's complicated and personal and I'm not going to get into on the Internet. Our pediatrician thinks the situation just needs a little more time to resolve itself, and we're waiting, patiently. Waiting for our appointment with a specialist in case waiting isn't the answer.
Another thing? Is that sometimes I am sick of all our things. I feel like there's always an explanation required, backstory to be given. Maybe I should just come up with new things, just to keep myself amused.
I'd love to get the laundry done, but the thing is, we're out of coffee so I'm busy lying on the kitchen floor crying.
We'd love to come to your party, but the thing is, your child is obnoxious.
I'd love to visit the zoo in 100+ degree weather, but the thing is, I have to check Facebook. All day.
We'd love to keep our yard exactly as described in the Homeowners' Association Rules, but the thing is, we're going to take a nap instead.
I'd love to help out at the PTO meeting, but the thing is, I'm too drunk to drive.
Sounds like a stressful day over there in spite of your tongue in cheek making light of it musings ..... hope that the kids have a fab day, or at least a good enough day that they want to go back again tomorrow! And keep your chin up dear, else you will dribble your Frodka and thats always a lousy start to any day!
ReplyDeletetough day....hope it gets better for you soon.
ReplyDeleteThe thing is (heehee...couldn't help it) we all have things....I have a 4 yoear old with urinary problems. "The thing is, that park doesn't have clean toilets....or a discreet place to change her". No one wants to have her over....a change of clothes and 'backpack' of necessities is a must.
"The thing is that he can't run around like that or he will be coughing ans wheeing for a week". Again...no one wants to have over the 8 year old boy who can't play like the other boys...
Anywho....the thing is I really hope you have a manageable week and that all your kids have a successful first week of school!!
The thing is, I can relate to a lot of those things. My son has autism. I've been dealing with some of these fun things for 17 years. Never a dull moment around here, we like to say.
ReplyDeleteIKR? Sorry this is going to be a tough day, hang in there. I sincerely hope you get coffee soon.
ReplyDeleteOh man, I totally hear you. We once had to do a home-bound thingy for little guy because of his sleep issues. As in, he didn't sleep for nearly two months. AT ALL. well, an hour here or there but guess who also didn't sleep then?
ReplyDeleteWe've also had the tummy troubles. Little guy (now 1st/2nd grade age but in a non-graded program) has had 'em. Endoscopies. COlonoscopies. Upper Gi's. Lower Gi's. You name it. The poor kid. He spends his life on miralax, fiber supplements and (GASP) pediatric suppositories. It sucks. Big, Hairy ones.
So, our things? Sooooo much like your things. Strength in numbers, sistah.
We are the family with all of the things, too.
ReplyDeleteMy two year old has an extremely weak immune system. She was sick a lot as a baby and on antibiotic A LOT, which caused her immune system to suck. So, she's sick all the time. And when she get's sick, she gets SICK. So, not only do I always have to explain things like (this is our current thing) L has a weird rash that has taken over her entire body. I took her to the pediatrician who has never seen anything like it, because whatever this thing is, on a normal kid, would not look anything like this... I also have to explain to people when ever their kid has any kind of thing, even a small thing, to keep the heck away.
She also has potty issues. She's only two, but pretty advanced so the day she turned two everyone was like "L must be potty trained, right?" Well, no. L doesn't go in public. And then if we are in public a lot a couple days in a row she doesn't go for days and it's a big painful screaming mess. She doesn't always go in a diaper, sometimes it's on the floor. She is pee trained when naked, but not when wearing clothes because she has frequent urination problems and it's just too much for her to ask to take her clothes on and off every thirty seconds.
Also, one of her arms is shorter than the other. She has a knot on her elbow, can;t straighten it out all the way. Waiting to see a pediatric orthopedic specialist. Will take six months. She did see a physical therapist who said all of her joints are extremely lose, so I am always having to yell at people "Nooo stop, don't swing her by her arms. They will Fall Off!"
I already wrote about her sensory issues on a previous post. So I won't get in to that again. She does have to have her feet washed after dinner.
And the baby, he's just five months old, already in physical and speech therapy. His eye site was delayed. His body is stiff. His hearing is... off. He has sensory issues also, and is very sensitive to obnoxious people, like his uncle.
My kids are diagnosed with anything and sometimes I wish they were. I wish there were names for there things. It would make my explanations a lot briefer!
And, yet another super long comment. Thinking I might need to open my own blog just to respond to your blog! hah!
If it makes you feel any better on September 7th I will be about 1 week post partum putting my oldest son onto a school bus to start kindergarten. The thing is. . .he has severe food allergies (I held him in my arms once while doctors yelled for crash carts thinking oh my god he is dying), he has SPD, he has selective mutism (so of course won't say if he is having an allergic reaction at school), and he needs speech therapy. I may pump and dump that day because honestly I just will want to crawl back into bed with a bottle of wine and cry. All. Day.
ReplyDeleteI'm so sorry that things cannot just be normal for your family. There is no normal, you have to learn a new normal with every challenge that comes your way and it appears you're doing it with as much grace as anyone in your shoes could. Oh, "the things"!!! Plus I have parents, inlaws, siblings, and several friends who (for the most part) do not get "the things". They roll their eyes at the things, sigh about the things, and generally believe that if I would just spank him, put him in bed to cry until he gave up the will to live, and feed him "good old fashioned food" that he would magically stop having difficulties with transitions, his allergies would go away, he would sleep, and suddenly we would no longer have to worry about how many days it's been since he pooped and wondering how much Miralax is too much. So for what it's worth, it's comforting knowing that lots of people have things. Just so sorry that yours number in the thousands.
ReplyDeleteThe thing is, I am blesssed to have kids with few special needs other than the need for a good long time out. I am often reduced to crying on the kitchen floor from the absolute crazy of five children in 4 different grades, hockey, pta, dance practice, mom can you drive me and everyone I know to the mall and home again, did Robert just puke in the back of the minivan.
ReplyDeleteI am in awe of moms that have so much more to deal with on a daily basis and are able to laugh at themselves and at me.
I hope your day gets better and that I'm not in the office when you get there if someone gives your son crap about tucking his shirt in.
What lucky kids we all have because they have parents who fight for them all day and cry in the laundry room when no one is looking.
I can relate somewhat, except it's me that has all the problems, and the guilt that goes with it is awful. I hate hearing my mom tell the kids "no YOU'RE going out with Grandma, mommy's staying home this morning, she needs to sleep" because mommy only managed to sleep 45 minutes the night before, or mommy's got a screaming headache that requires muscle relaxants, or mommy's having her own tummy troubles today. My kids spend a lot of time with Grandma either because I'm not feeling well or I've got another appointment, or another test, or something like that. Now we're having to opt out of family events because they're not willing to accommodate my spontaneous dairy allergy (I was actually told to bring my own food to a family BBQ because they weren't going to make any effort to even check the ingredients on the burger buns). It's no fun when my 4-year old has something with cheese on it and tells me "You can't have this, mommy. You're allergic."
ReplyDeleteSo yeah, I'm sort of with you. I'm happy my kids are healthy at least, but I wish I was feeling good enough to do the things they want to do.
Sorry such a rough start! Sending you lots of virtual coffee and love! You are an amazing mom and I wish you all the best
ReplyDeleteOh wow. I feel bad ever complaining about my kids' issues. But the thing is...you are completely awesome! I wish I was in Houston so we could get too drunk for a PTO meeting together!
ReplyDeleteI used to think I was the only one who said, "The thing is...." and continued on into some complicated tale of illness, newly diagnosed disorder or freakish symptoms with no known cause. I seem to be the only one among my friends, at least. I hate that you're having to deal with additional "things" but am very thankful you have a friend who understands. Best of luck on the first day...hope there's an end-of-school celebration in the kitchen that will nominally make up for the crying fit on the floor. It's the little things that keep us going....
ReplyDeleteI'm really starting to think I found your blog for more than a few laughs. You're inspiring. We saw our neurosurgeon Thursday after the little guy's millionth MRI and it was one of those good news/bad news kind of days. "Good news, the fluid is totally gone from around his brain. I can totally see his brain now. But the thing is, there's definitely been some damage done to his brain." [There was severe brain damage done during delivery which caused a massive collection of fluid to build up around his brain and basically smash it to his skull. He's a 2 brain surgeries - one to put in a shunt and one to take it out.]
ReplyDeleteJust when we were hoping it was all over, there's something new. And the thing is, with all this going on you still totally rock. Hope getting your school year routine set up goes okay and I too can find everyday humor in my life of ups and downs.
(((HUGS)))). No snappy response here to your awesome honesty.
ReplyDeleteMy daughter was born without an ear, has had three surgeries, wears a hearing aid and has to sit directly in front of the teacher, has had "tummy troubles" (I totally get that) and now she's developing social anxiety. I feel you, sister.
Just remember - we all have "stuff." Some people are just better at concealing it than others. But, it's there.
Oh, I'm sorry PBK, that must be tough. My prayers are with you.
ReplyDeleteI do know, however, the explanation required life. I feel like my family & home live in a lava lamp & just when everything is about to settle, something comes & shakes it all up! It's never-ending... and so exhausting.
Our pastor's daughter wrote me on FB that we should get together for a beach day (She has 3 kids, almost the same ages as mine, but without "issues"). Hmmm... how do you say the following without freaking someone out: "Thanks, but no thanks because the last time I took my boys to the beach, they were insane & terrified & we all lost our minds & didn't recoop for days". I found a nice way to say it which she replies "we can do whatever you'd like". Hmmm... that is great, but I can't promise a successful play-date anytime or anywhere. Let me just cry myself to sleep for now. I'll get back to you.
I feel your pain SRMM.
(((hugs))) That is all.
ReplyDeleteWow. I'm so sorry for all the things. I hope you actually get a chance to cry! No really. I *hate* being in tears with the kids around, they get worried and try to help. Which makes it worse. And I am now reminded about a call I need to make. For my kids' things. I think my son is ready to address his Things that come from the home invasion a few years ago, with a counselor who won't just tell me he needs to be medicated. No, the people who broke in and played tug-of-war with him need a case of lead poisoning. My son's reaction is actually pretty normal. Let's work on coping skills.
ReplyDeleteFirst of all, I'm very sorry about PBK's tummy troubles, I have a bad case of IBS myself and IT SUCKS, so I empathize--I hope you find a solution soon.
ReplyDeleteI can so relate to this post (though we only have two kids so it's less insane) but every time we start a new situation, there's all the explaining about L's allergies and EE and speech and blah blah blah.
Thank you so much for talking about the tough stuff. I found your blog a couple weeks ago and it's been such a breath of fresh air. Someone gets it! Keep up the good work! And I hope the first day goes well for everyone.
Hugs!
ReplyDeleteGracious sakes. You're living MY life. Except I only have two kids, and one of them has the severe food allergies, asthma, and car-obsessed autism all at once! The other "just" has some food allergies. And I'm the one with anxiety. Lucky me, we ran out of "tummy troubles" about two years ago. I'm happy for that!
ReplyDeleteThinking of you and all your wonderful kids.
ReplyDeleteHugs to you SRMM. You are an inspiration to me. Even though I only have 2 girls 19 months apart, I will be returning to work in 2 weeks. Teaching requires me to give up so much time with them September through June, and those smart ankle biters...I mean darling girls sense it. They have been stuck to me like a hobo on a ham sandwich. But your posts remind me to hug my girls, play on the floor, neglect those research papers (like I really wanted to read them in the first place)and to be patient with the 165 students I will see each day.
ReplyDeleteAlthough it can be so trying and trite to hear, stay strong, drink coffee and have a glass or two of wine...
((HUGS))
ReplyDeleteI totally understand.
ReplyDeleteI would love to put my kids in childcare for the MOPS Table leader meeting, but the thing is...my eight year old autistic daughter would go nuts and scare the little kids and pull all the little girls beautiful ponytails. I'll just find my own sitter.
I needed this post today. I'm tired of the rounds of specialists and explaining as matter of factly as possible all the problems/issue/etc.
ReplyDeleteOMG...I sure wish I'd had this type of attitude 30 years ago [attagurl], but the thing was I didn't know if I was suffering from 'baby blues,' the 13 years between children had been waaaay too many, if I was a victim [true] or the doctors were crazy. I'm 62 yo now. Those 30 years have gone by might fast/slow...ya know? She wasn't dxd until she was 16 [that was after our first bankruptcy...see we were also trying to run a business...try that one on!]. She's married now; living with us because she still doesn't understand money and her husband [bless him little peapickin heart] just doesn't get it and keeps asking us..."What is autism again?" hahahahahaha...go ahead...try to explain to HER HUSBAND...isn't that something that you would want to know BEFORE you signed on the dotted line? It's obvious that not a lot of people gets this...not even her brother; he thinks she just spoiled...yeah right!
ReplyDeleteAnyway, maybe I'll just make it a habit to come by and laugh a bit. Maybe I need to find another way to deal with this and laughing is a whole lot better than continuing this victim stuff.
Thanx
PS BTW, Christy sent me over.
I totally get the crying on the floor thing, it was a regular occurance for the 4-6 mths after our boys (fraternal twins but so different we just call them "the boys" they are 4 1/2 now) were born....sleep deprivation is a bitch. M decided that feeding every 2 hours round the clock, (and no he wouldn't take a bottle) and screaming every night for 2 hours before settling (ha!), only being held by me was an awesome way to live. once a week I had a melt down. crying on kitchen floor, hiding the knives so I didn't hurt myself or others kinda meltdown...
ReplyDeleteoh yeah, we had 3 older kids too.
now we have one more - luckily he's cute and sleeps more - but I still have days where Mum's Special Drink is the way to get thru the Dinner Hell Hour.
We have mild eczema (altho one kid had it real bad for a while), no major allergies, and one child with mild developmental delay so I dunno what I'm bitching about here....
All I know is I look at the snapshot of your life I've seen after finding your post (thru MomIn_AMillion) a few weeks ago and I think to myself "shit I couldn't do that. I dunno how she gets up in the morning" But I know that people think that about me too, so I guess we cope with what we have and just keep on keeping on. trying to enjoy the fun moments when they happen.
I spent time yesterday laughing and rolling on the floor with #6. It feeds the soul. As does your blog. thank you *hug* you're amazing. :O)
The thing is, you are wonderful. You are strong and loving and supportive and you love your kids so much it's completely obvious even from miles and miles away.
ReplyDeleteThe thing is, you are a kick a$$ mom. You deserve your coffee in the morning and your drink at night.
Although, chances are, the more you drink at night, the higher the risk of tummy troubles at 3am. Not something you want to be cleaning up after with a hangover.
Keep up the good work and know that you are prayed for and loved no matter what your thing is. :)
Awwww hang in there. I can totally relate to everything that you ae going through. I have 3 year old twin boys who both have CP.(one is worse than the other) and they are starting preschool this year so I had to sit with the teachers and therapits and design an IEP for them and make sure My older twin's(he is the one with severe pt)classroom was adapted for him and the teachers knew what he needed. On top of that My oldest son has Asergers. We are always on the go to and from appointents all over the state of NC. The only one who doesn't have any issues is my middle child. I feel badfor my dughter sometimes because I feel like her needs sometimes get pshed aside because of all of her broter's needs. So yeah, I can totally understand where you are coming from. Sometimes you just wanna scream and cry, But ya can't cause the laundry ned folding, supper needs to be put on the table and the kids all need you.
ReplyDeleteMy mom always said "Why be normal? Normal is boring." Yeah. Needless to say, I grew up in a "the thing is..." family. My brother has severe neurological problems, I had "tummy problems" and missed an entire month of the fifth grade, along with some minor heart issues in my early childhood. I've already accepted that things aren't gonna be all "Leave it to Beaver" with my child. At 2 and a half, he already has heart issues and is displaying some, shall we say, eccentricities that I am keeping an eye on. The point is, every family has their "thing" their quirks... whatever. Even though normalcy may seem to be a thing to strive for, your ability to adapt to certain situations and to love and support your children through all their "things" will do sooo much more for them as they grow up.
ReplyDeleteAll the moms here are so inspiring!
ReplyDeleteMomsRising would love to hear your stories about how health reform has affected your family, especially as parents of special needs kids. To share your story, go to:
http://action.momsrising.org/go/319?ak_proof=1&akid=.1618648.eKVU1-&t=4
Thank you for sharing your stories!
I discovered your blog yesterday via FB link and have spent my time waiting for my 2 y/o in speech therapy reading. Thanks for putting a fun outlook on chaos. Obviously we can ALL relate.
ReplyDeleteRegarding PBKk's issues, hopefully the new GI takes care of it. We were taking above stated kid to a GI for FTT for over a year. After going for a second opinion, we ended up with an EGD. They discovered, while looking for celiac disease, that he had GIARDIA. He had been tested 6 months prior, but we somehow ended up in the (un)lucky 2.5% of humanity who can have giardia and not excrete it in his poop. Or have diarrhea for that matter.
Two weeks of flagyl and the kid ate voluntarily for the first time ever!
So here's to being the PITA mom who doesn't give up on your kids.
(Btw, that isn't his only prob. Also has low tone and texture issues. We're working on those.)
The thing is, I'm in love with you : ) You are hilarious!!! I am the mom of a special needs child and the thing is....I CAN TOTALLY RELATE!!!! Only I'm just really not as funny as you : )
ReplyDeleteIt looks like I'm nearly a year behind but you totally have a new follower : )
Our blog is...lame in comparison...but I'm a tubie mom and our site is: http://hope4haven.wordpress.com/
I wish you the very best of luck!! I hope everything improves and gets better!! Hugs to all!!
ReplyDelete