I’m finally able to talk about the Christmas concert without crying. Not to sound all pitiful, but it was very disappointing. It’s just that I was so excited to take Piperjane to it. I envisioned her “getting” it and enjoying the music. I got giddy imagining us dancing to the songs and smiling at all the people. Blythedale can feel a little like Groundhog’s Day sometimes, and this event was going to shake up the routine. I couldn’t wait to do something different with my little girl.
Here are some pictures to help tell the tale.
In the elevator ride there. Pip looks confused/alarmed about the early call-time. On schedule to perform was The Frey, Gavin Degraw, and Rob Thomas. We don’t really know much of their music, but I’m promising Pip a good time.
We are seated (close to the front) and waiting for the program to begin. Pippy is skeptical, but looks on the bright side and remembers that mom brought her my little pony toy.
Piper is getting lots of attention and she is starting to get pissed. She is clinging to me like a tree frog and avoiding eye contact with anyone wearing a Santa hat. Which by the way is everyone in the entire room.
I decide that as soon as the music starts, we’ll only stay a few songs. I use a portable suction machine hoping a junky airway is the cause of her stress. Her vent starts beeping violently and everyone stares. Piperjane is nestled into my bosom and keeps up the tree frogging.
FINAL STRAW. Santa Clause’s grandmother comes over to say hello to piper. She is wearing a red velvety floor length fur trimmed gown and repeatedly patting Piperjane on the head. Pippy is terrified of her. She is literally freaking out right before my eyes. She decides to swat the poor woman away. I apologize and thank her for trying.
Just as the music is about to start, Piperjane barfs everywhere and we are escorted out quickly by a team of therapists and nurses. Everyone is staring and I feel hot all over my body. Piperjane kicks me in the privates and her shoe falls off.
We miss the entire concert.
I felt awful the whole time I was cleaning her up. I shouldn’t have made her stay there when she was clearly not having fun. I just kept hoping she would hear some music and start to enjoy herself. I thought with her being a little older this year, she might have a good time.
She quickly cheered up once I got the puke clothes off. She jumped around and smiled and played. I was glad to see her being that Pip again, but I was sad to be back in the room like every other day.
So, that’s the story of the Blythedale Christmas Concert. I didn’t realize I was so upset until I got to work and someone asked me how the concert was. I started crying like a crazy person out of no where. I’m really not a drama queen unless I’m trying to be funny, but I had a boardline histrionic meltdown right there in the back room.
Can anyone relate? Do you feel like you have meltdowns about some of the most minor issues?
PS thanks for coming with me Jen!
You are normal and your reaction was completely understandable. You had high hopes and things did not go as you had planned. Christmas is such an emotional time anyway – everyone is supposed to be happy, happy, happy. In reality, we are all stressed and the hype is overwhelming. There isn’t a parent alive who hasn’t had this experience. It was disappointing for you and for your baby.
Oh yes! My heart goes out to you! It has happened a couple of times and it was just recently that it happened again– Maddie who is 8 and has DS wanted to be a ballerina—for weeks asking in her way and knowing that some of her classmates were taking dance lessons after school–so I found a dance school in Montclair NJ that was very accomodating to her needs–paid a fortune-got the leotard and shoes and even a frilly backpack for her shoes–even went to visit it before hand–she was excited and so was I–first day of class she even made a little friend before the class started– went into the room and she sat in the circle and then she ran off in the corner and started to cry and yell–everyone was staring–kind ladies were trying to help– shoes came off and seeing me made it worse– she did not want to stay in the class or any other–came home and she went happily to the table to water paint on her paper while I flung myself on my bed crying my eyes out-I cannot explain why–so many reasons it just is too bundled up.I hope someday I and maybe you can have tears that make us laugh when we remember these times instead of crying. xxoo
I don’t know if this will make you feel better, but your experience is so “normal.” I have two children….both grown and in their 20′s, but each of them, at one time or another, has freaked out at inappropriate times, thrown up in the most awkward places, and have created situations which resulted in the stares of strangers. It sounds to me like you have an everyday, honest-to-goodness modern child. Welcome to parenthood, where your child will drive you to tears, and then fill your heart with joy.
p.s. I will NEVER go to Disney again because of my children….Does that give you any indication of the “fun” we had there???? Talk about expectations being shot to hell! I cried most of the time there and repeatedly said: “Where’s the magic???”
Oh my Reagan, of course! Everyone has melt downs over seemingly small things…EVERYONE! But there was nothing small about this. You are a naturally “glass half full” kinda gal. All you wanted was a special night in a festive Chirstmas surrounding to enjoy your Piper Jane. Do you know how many parents have done exactly the same thing? Forced the birthday smash cake. Stayed just a bit longer at the zoo or circus because they were so certain that if they just had one more minute things would be different. It was your sheer desire to give Pip something magical. I confess, I don’t even know you or your little precious. But I saw those pix and burst not tears….just cried and cried and cried. Her little sad face broke my heart. But just like that she was awesome again. Just like that. It’s a lesson for all of us on making lemonaid out of lemons. You are a great mama. It was all just a little too much for her on that night. Simple as that. Feel better Reags…thanks for the sweet pix of your sweet Pips!
Reagan, that was so so normal Mom stuff. I can’t tell you how many times I’ve built up experiences/things in my head for an epic fail to meet expectations. Just the other day I went nutty-crazy-weepy over something that I probably should have chilled about… Nearly every birthday party I’ve ever had for my kids had not lived up to my expectations, likely because I’m working so hard to help/feed/please my guests that I can’t pay attention to my kids’ adorable moments and barely take photos. Every year I swear it’s going to be different! Maybe next year will be better
P.S. Her red dress is ADORABLE!!! So vintage-ly festive.
It looks like everyone has given you some great “I’ve been there” / advice stories so I will try to keep this short! You asked if anyone has had meltdowns over minor things. Ha. The other day, we were talking about buying another house (someday) and I just love our tiny little starter home. I got all teary eye’d in the shower the other day and was just like, “Someday we won’t live here anymore!” Ha. What a nerd. Chalk it up to “being a girl.”
CHIN UP! There’s always next year! 
I have had similar dreams with my CP boy. Taking to someplace special, having a special time enjoying it together, creating a wonderful memory to share. Then the smallest unexpected noise (like a baby making the tiniest baby sound) would set him off and that would be the end of it. I guess it was more my dream than his, but it always made me sad. The best times ended up being the spontaneous ones, like a country music concert in a Walmart parking lot one time. He sang louder than anyone and no one around us was bothered by him. THAT was a special memory that I still treasure – I will always remember the pure joy that that day was for him and the kindness of the strangers around us. <3 You and Piper will have those days, too, when you least expect them.
Reagan, I think every parent has been through this feeling and sobbed. You planned and look forward to a wonderful Christmas concert with your little girl, and it didn’t go as planned and you arre disappointed. You are a mom, and very good mom. Don’t stop making plans for you and Piper Jane. You learned what I refer to as “a teachable moment” in like–you learned PJ’s reactions when she is not happy in a situation and when the is to leave said situation. Try another event together and hopefully the more Pip goes on these outings, taking her out of her comfort zone, the more she will grow to be adventurous and want to stay at the events.
Wishing you the best.
Your post brought tears to my eyes. As the mother of a child with a disability, it can get so frustrating when you want a quote unquote Normal moment. When you think maybe he can handle and we can be a little like “normal” families. I had visions of a wonderful New Years Eve celebration but alas we celebrated New Years in tears driving home. Maybe one day we will get there. Maybe one “normal” thing might happen for us. Or maybe I need to change my thoughts of “normal” to “our normal”. It’s not an easy road that we are driving down. But one we have been given and we are the lucky ones that are the mothers to these special, strong, unique, vibrant, wonderful, loving little beings that after moments like that you turn and looking into their loving faces and all is forgiven (at that moment).
Luvs and Hugs!!!!
Ohhhh yes. I’ve been upset over the silliest of things. This definitely wasn’t silly on your part. There’s something so festive and wonderful and magical about Christmas and you just wanted to share that with Pip. When she was back in her comfort zone she was completely fine again. Don’t give up… Pip will understand.
I got upset yesterday because a dinner I had been hyping up for weeks was the most disappointed dining experience ever. It’s a very very silly thing to be upset over and I just need to remember that. I got over it quickly but last night I was so mad, I could have just spit!
Oh, I’m so sorry and sad for you. Those pictures are heart-breaking and those crying-attacks are not fun but I think they always help us to grow in some way. She has probably already forgotten about it (young kids’ memories are pretty short). You are a great mommy! Try to learn whatever it is you’re supposed to learn, and move on and try to forget about it too.
Oh, this hurt my little heart. Hope is so fragile sometimes. You’re wonderful, and I am sorry something as simple as going out with your child.. that wish, that dream of yours.. well all of it came crashing down.
The day to day of your life.. the challenges you face.. I’ve told you before I stand in awe. Jake included.
For the record, I cried at the mechanics. Oh and the dentist.
This makes me cry because I relate. Oh, how I relate. Like everyone else has said, it’s normal and we all have had these moments. But for me (and likely other mom’s of children with special needs or major health issues) sometimes this heartache comes from mourning the life we had envisioned for them. It is a life that has not and may never go the way we had hoped. There is both great beauty and overwhelming sorrow in that fact.
So, it’s okay. Really.
Oh, I’m so sorry it all went down like that. As a mom of 3, I can soooooo relate. So totally normal, which I’m a way is good, too! My poor first born, born into this fairy tale world of all my expectations. .did she ever humle me… They say when you have wkids to lower your expectations and then lower them again and again! Loved the Disney comment above. Mine was, “Come on, we’re in the Happiest frickin place on earth…”
Reagan! Everytime since they were 3 months old that my twins have looked cute or we are going to take pictures I get nervous and they feed off my nervous energy. I’m normally chilled out for the most part but they both look spic and span so rarely that I freak out that we aren’t going to capture THE MOMENT. Inevitably, they start freaking out along side me which makes me get all the more nervous until its a 3 female wailing mess. The photos you have of Piper are amazing. I envy your photos. Ours all look like we are possessed by the freak show monster. Feeling sad because you wanted the memory only tells us one thing… You are just the awesome Mom we know you are! Hang in there!
No words other than…if I were there with you…I would have been crying for you. That bites the BIG one.
From Kelly xoxo
I think crying like a crazy person comes with the territory of being a mama, especially a mama in a high stress situation with hopes that were dashed. Piper looked gorg and every single person in that room understood what was happening, I feel certain that all their hearts went out to you. Can I tell you, ‘Santa’s Grandmother’ popped a giggle out of me even though my eyes were teary.
When my son was four, we decided to take him to a Sesame Street play.
We were so excited to be able to do this for him.
He freaked out and was lying face down in the lobby crying.
Everyone saw.
We left early.
It sucked.
you just wanted to share something with piper and thought she would like it too. i think you are a wonderful mom for doing so. no worries.
all moms in the room will surely know what you went through then!
I think I only have meltdowns about minor issues…my hubbs has them about the biggies! Pip looked so festive….you are the best Mom, seriously. My kids drew Pip some pictures this weekend…maybe we can send them to a P.O. Box for her?? I will email you!
xo, The Wilkins
Yes! Everyday as a parent brings some type of breakdown. Just last night with my 2 yr old son actaully. My husband was sick in bed all weekend with allergies (darn KY weather) so my son didn’t see him much. He was stuck with mommy and although I’m cool I am so not as cool as daddy the pay dough master. Husband felt ok enough Sunday to run to the store for powdered donuts (because his son wanted donuts) and it was a world war 3 breakdown. “Daddy! Daddy! Daddy!” he cried as my husband backed out of the garage. Big huge tears. He cried until my husband came back. I felt so bad because while he was gone I couldn’t do anything to help him and his tears made me cry. He was crying so hard. All he wanted was daddy and I couldn’t fix it. I won’t go into the numerous times mommy guilt has won me over. Hang in there. She may do better next year. You never know and you may find something else to do together that she will love. Parenting has a sharp pass fail but the best part is our kids are tough and love us!
when you figure out you’ll be/are a mom of a special needs kiddo, you know it’ll be tough, but your kiddo is awesome so whatever.
what you don’t know at that time is how often your heart will be ripped open. it’s to the point now where anything good OR bad with that kid and i just start crying.
i kinda hate that.
I get it. I realized it was ridiculous to bring my son to my daughter’s orchestra concert if I needed to bring books to distract him and music on his iPod for him to listen to. So, I stopped bringing him. But it would be nice to just once do something that normal families take for granted. Our family is planning our first vacation without my 12 year old this year and while part of me feels like I’m abandoning him the biggest part of my brain knows he would hate it.
I get it too, those experiences with kids are pretty gut wrenching for a mom. You want something that will be fun and good for them, build it up in your mind and they pretty much rip your vision of it to pieces. Parenthood is so much less glamorous than I thought it would be. Amazing kids, though. But very groundhog-day-ish and special occasions are stressful for kids so they have to go and ruin them basically every time. But this was a sweet and honest post, thanks for sharing!
It’s so hard when we have these sweet expectations and everything runs amuck! Piper is a lot like my Piper, they know what they want, when they want it and damn you mama for trying to change her mind! You made a valiant effort though. (Santa) hats off to you!
ps I love the smug, shirtless shot at the end of this post. That Piper Jane is a smart one. Thanks for sharing your honesty with us. I just love your blog. xo
You can tell by the last pic that PJP is feeling MUCH better! The reason everyone was staring after the barfathon is because their hearts were sad for you. Also maybe they were a tiny bit relieved that it wasn’t their child being assisted out of the concert. Kinda took the pressure off, if you know what I mean.
Any way you look at it having a child who is ill is no cakewalk. Toss in the Christmas season with mandatory perpetual cheeriness and crazy outfits and it’s an absolute recipe for disaster.
I’ve got lots of bad event stories involving our daughter but I have also taken care of ill children when I worked with Hospice and there is no way to compare the two so I’ll just end with saying you did the best you could and it all went awry in a second.
Having a hystrionic fit is a gift. It clears your head (not to mention your sinuses) and makes you humble enough to regroup and move on.
Thanks for sharing. Barf or not, shoeless or not, dressless or not, we love the whole Breinholt family and we appreciate the way you open your heart to us again and again. Many hugs Mrs. Reagan. Carry on.
Oh poor Pip! I think your emotions are totally normal and that most parents have experienced something similar. Just last week we took our boys to Disney on Ice. We totally surprised them, they had no idea. No sooner were we out of the car, and walking towards the convention center, before they both started crying and insisting that we take them home. I was so confused by the reaction…like where would we be taking them?? My oldest was instantly happy when I confessed where we were but my youngest had to carried to the seat, sobbing. He was terrified of the big building, crowds, loud music. I was so nervous that we wouldn’t make it though the event (or that I’d spend the entire time huddled in the bathroom trying to reassure him that everything was fine). Thankfully, he calmed down once he took the time to see what was happening on the ice but it was definitely one of those moments where the night was not what I had envisioned! I mean it’s Disney, the happiest place on earth, right?! (By the next morning he had declared the night as “awesome!” Silly kids..)
I think that when there’s a big change in the routine and the new place is so unfamiliar that it’s more than some kids can handle…For now, there will be no more big suprises for my two! LOL!
With kids you always have to reajust your expectations…I find that’s one of the hardest things. Hoping next year things will go more smoothly!
I am glad to hear that so many moms have had meltdowns over the littlest thing.. Just a couple of weeks ago our 2 year old had a serious regression in her potty training and had had quite a few accidents in one day.. I was at my wits end and then she tells me she needs to poop but when i turned to take her to the bathroom I discovered she had already pooped-on my carpet!! That’s all I needed to push me over the edge, I seriously sobbed for half an hour and she just looked at me like I was this crazy lady- at that point I wasn’t too far off!!
It’s always hard when your children don’t react to something the way you anticipate.. I have been there too!
She’s 4. Kids LOVE routine, and the boring normal stuff, really. It is so disappointing to us when that super special thing just flops, but remember, it’s not about us. Been there, done that!
That pipture of her with Santa’s grandma is a heart breaker!!!
Uh, oh. I distinctly remember asking how the concert had gone…so sorry!! Every reason for you to think it would be a nice distraction from the every day routine for Pip and for you – she’s been healthy, she’s a year older, she seems to like music, etc. Something about a parent feeling like they’ve prolonged their child’s discomfort, hoping it would get better, that makes us all feel sad, selfish and lousy. But 1/2 the time it WAS possible for me to change my children’s bad mood, unhappiness, whatever was bothering them, by just hanging on a little longer for something to catch their attention. Didn’t happen this time, which is crappy. Going by that happy shot of her near-naked in her crib a little later — she didn’t linger on it like her mama! All better now.
So sad that Piper didn’t feel well! I can’t say I blame her for being pissed- I wouldn’t want some stranger in a long velvet dress repeatedly patting my head either!
Oh, I’ve had breakdowns about MUCH more minor things, unfortunately. Like the time I was supposed to make a jello salad for Thanksgiving with the in-laws. I always get assigned the easy stuff because I’m not a good cook. The night before Thanksgiving I somehow managed to screw up the jello salad. I had a MAJOR FREAK OUT. We’re talking screaming, crying, and literally throwing myself onto the bed in true Drama Queen fashion. Not one one my prouder moments.
So many wonderfully supportive things have been said here! I have a special needs young adult son, and I felt supported even though this isn’t even my blog!
People of “normal” kids absolutely have emotional times involving their kids–for sure! I really do think, though, as some others have indicated, that we moms of special needs kids live in a place where tears hang out just below the surface at times. Bring on just the right circumstance, and we are a fountain! Let me borrow the words of Julie above: “But for me (and likely other mom’s of children with special needs or major health issues) sometimes this heartache comes from mourning the life we had envisioned for them. It is a life that has not and may never go the way we had hoped. There is both great beauty and overwhelming sorrow in that fact.” Sooooo very well said.
AND if I may also quote part of what Kirsten said above: “When you figure out you’ll be/are a mom of a special needs kiddo, you know it’ll be tough . . . . What you don’t know at that time is how often your heart will be ripped open.” Oh, how I relate to that one, too!
Our kids are awesome, as Kirsten also mentioned, but as moms, we just often feel extra tender-hearted toward them because of their (and thus our) extra struggles.
What a support these comments have been today! I hope they have helped you, Reagan. The fact that your sweet Piper cheered up so quickly must have made you feel majorly better, but I fully understand how the disappointment remained.
I totally relate. The “little” things are what set me off all the time too.
And DON’T feel bad about not taking her out earlier. Think about if it had gone the other way–say the Fray had gotten up there and she was riveted. The post would have been “she hated waiting but once the music started the Santa hats were forgotten and all was well.” That’s what you were going for, and the fact that it turned out not that way doesn’t matter. You responded to what your Pip needed. That’s the key. Good for you for going, and trying (do you think she would have even stayed that long with anyone else? NOPE), and doing so much to give her the best Pippy life possible. You rock.
PS–”back in that room like every other day”–my older son THRIVES on that routine. He is eager to take little after school classes BUT is so attached to getting on the bus Every Single Day that he won’t do it. He never did any “special” little activities because he just loves his comfort zone. And age 4 was really the peak of that. And yep, it drove me crazy too because I felt like it was stultifying to have him only repeat repeat repeat. But he loved his little world and was not eager to expand it. It’s a bummer waiting that out. But be comforted–she loves her routine = she loves her life! She has no idea what else awaits her, and we parents can sometimes be too eager to share. Hugs to you.
I would have moments like that with Laura. One time when we were younger we went swimming and we were in the locker room. A stupid lady came up to Laura and told her to get out of the women’s restroom and go to men’s. I went totally ballistic and screamed at the lady that this was my beautiful sister, and yes I did call her stupid to her face. Lol, maybe I shouldn’t have been so mean but I was proud of myself for standing up for my sis. Those kind of moments kinda bring back feelings that seem to be like the one’s you felt. Sorry about the concert and I sure hope that it goes better next year
Big hugs from Texas. Yes, I think you’ve heard it all from all of us — we all have our tipping point. ShayLynn said it so well: Hope is so fragile. You hope for a moment of normalcy amidst the tubes and monitors and hallways and get barfed on instead. No one is throwing stones over a few tears. Girl, you are a trooper through a tough situation with that girl (I’m not saying that SHE is tough — but the fact that you have to schlep half a world away to go snuggle on her? You don’t have near enough pity parties, in my opinion…) You cry when you need to, no shame, let it all out, then shoulders back, fresh lipstick, and carry on. You are doing great.
I completely understand getting upset over seemingly small circumstances. I think especially when you go through tough circumstances in life, it’s hard when the little things let you down. It’s at least enough for me to have to go through the bigger stuff. The little stuff is just kind of like an extra kick in the butt.
I can’t fully understand your situation. But I lost my mom to breast cancer when I was 16. That was 14 years ago this month. Then in June of last year I lost my only sister to breast cancer. So, I can at least understand how much you realize the little moments matter.
When it comes to being a mother, there are millions of different reasonings for torrential melt downs. They come from nowhere!
That sweet little Pip. I just love that little girl. Those pictures totally tell the story. You can just see the anxiety on her face in the elevator picture. And then back to the laid back little pipsqueek in the last one. She is so cute reagan. Im sorry it didnt work out the way you pictured it. I hate it when that happens. Bad.
Totally understand what you are feeling, totally. My son has rheumatoid arthritis, and each little event like this to remind me that things aren’t ever going to be normal, are just so traumatic. The current normal is going to be OK, but it is going to take some time.
Now, here is my embarrassing story. totally non child-related. On my first day of work at a new firm, the managing partner came around to meet me and shake my hand. I immediately and politely popped up like a little jack in the box, caught my heel in the skirt of my suit (this was approx 1990), and jerked my skirt to the ground. No slip. Just the control tops.
oh yes.
Oh Reagan, I can imagine your disappointment and ditto what everyone else has said. But I have to say, I laughed at Piper Jane’s satisfied, happy face in her Santa hat and diaper. What a doll she is!
You know what that is? An experience many many parents have gone through – regardless of whether or not we have children with special needs!
“This is fun and Santa is awesome, so enjoy it my hysterical clinging child!” My youngest did this with Santa this year – some huge booming voice person in a costume gets in a little one’s face and we expect them to be joyful? At least the Santa we saw had enough sense to immediately back off.
my 5 year old defined why clowns were scary the other day (and I think this applies to Santa as well…) “You don’t get to see their human face”. Makes sense to me!
love this blog – and love that last photo of Piper in hat and diaper!
Feeling your pain… as a Mother you try so hard… don’t beat yourself up.
Hugs!
ToOdLeS.
I’m sorry but this post made me chuckle- that girl has a way of communicating. ‘She kicked me in the privates…’ And the look on her face when she’s back on her bed was like ‘Yes-this is just what I was aiming for!’ I don’t know why I laughed when reading it but I felt bad when all the other comments were more sympathetic. Maybe because I’ve been in that situation many times and have learnt to laugh at myself.
Oh, I’m soooo sorry. I was looking forward to hearing how great it was to be there.
You’ve had lots of “been there, done that” stories, so I won’t add mine. And I know it must be especially hard for you, because you don’t get to get out of your routine much.
The sad picture with Santa’s grandma just reminds me of the Santa pictures every parent insists on getting, while their child screams in terror. Why DO we do that? Hopefully, you will look back some day and laugh at how cute the picture is.
I’m sure anyone staring at you guys was doing so in sympathy. But it looks like Piper Jane had plenty of fun in the end.
A friend of mine says 90% of any conflict is a failed expectation. So true in this situation.
I wanted to cry for you. Take peace in knowing that her happiness came from just being with you. YOU are her happy place. How fortunate are you both.
Love to you both.
xo
I also will not add my stories to the mix but with two children in their teens, there have been plenty. What I do want to add is that you are a great mom because you took the effort and tried. There are plenty of parents that do not put in half the effort you did. As a parent, all you can do is try and some works out great, some not so great. It is the stuff that works out great (the walks outside, the swinging, the little toys) that you can remember, don’t sweat the not so great stuff because in the end it looks like the great memories far outweigh the bad ones.
Awww, Reagan I’m so sorry things didn’t go according to plan… Your intentions were wonderful–and, like some of the others said, I hope you don’t give up!! I think she’ll get used to socializing more in larger groups of people once you’ve tried it a few times and then will likely enjoy the change of pace! It brought tears to my eyes too–not used to seeing Pippy looking so sad and irritated and then I HAD to laugh at the last one of her sitting there in her diaper looking ohhhh so comfy and pleased with herself lol! You guys do an awesome job parenting–plz don’t lose sight of that! And as always, Pip looked soooo cute in her holiday best!
I can totally relate with the spontaneous crazy person cry.