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 such a good mom!
you know, it’s just so darn hard to be a mom!!! i have had lots of times that i’ve tried to do something i thought my child would like, only to realize they hated it!! it’s just hard to know when to push them a bit, or when to call it a day! how could you have known?? & by the way i totally have puker kids that puke EVERYWHERE. it’s awful & so embarrassing
it’s funny how before you’re a parent you see mothering one way & then as a mother you realize HELLO! no one knows what the h*ll they’re doing with their kids!! we’re just all trying the best we can!!!
Yes, I do. I have two daughters, adopted, with issues. Sometimes it’s just hard and I wish we could have normal experiences. They have gotten better over the almost 4 years our daughters have been home but it was really rough in the beginning. Right now it’s rough and my 7 yr old is regressing as she’s just started a Special Ed day class at a new school. We are seeing all kinds of regressive behavior. We expected it but it’s still hard. Hang in there, I hope some day PiperJane is ready for that concert and it becomes a good memory. I know it’s hard to hear “you are doing such a good job” when some days you just don’t feel like it. But you made a memory and the smile on PJ’s face in the last pic is great.
Okay, I’m sorry, but when you got to the part about her kicking you in the privates, I got a giggle fit.
And yes, we’ve all been there with the inexplicable meltdowns!
Reagan, here’s the thing. There are very few parents that know what it feels like to be where you and Jake are. To have all of your moments with your child be spent in a hospital must be soul draining and my heart breaks for both of you. Those of us that can take our child here and there really do take it for granted, and reading your blog has put things in perspective for me in regards to my own life. Please don’t feel like you have to downplay your sadness at not being able to break away from the normal Blythedale routine. We all know how awesome you guys are at making the best of Piper’s living arrangements, but it doesn’t change the fact that it is definitely not where you guys would prefer to be smothering your little girl with love and kisses. For that reason, you are entitled to your meltdowns and disappointment and I am always amazed at how infrequent they both are.
It’s a great photo story.
Adorable girl dressed up cute as a button but seemingly uncomfortable. Juxtaposed with the same adorable girl in her undies and goofy santa hat that looks happy and absolutely satisfied.
Sorry about the kick! But it sure made me laugh.
The last picture is perfect… clearly a very happy and content Pip. I have had heartbreaking days as a parent…. going through the moments of “why can’t my child do X or Y like other kids”. It is tough. It is good to open up about such things….thanks for sharing with us
I’m a total stranger, but I’m telling you that what you experienced is something that EVERY parent has felt at least once (if not, they are liars).
If I had a nickel for every time I’ve taken my kids out for “an experience of a lifetime” only to realize that they just wanted the same old routine….baby, I’d be a rich woman.
Hang in there. You can do this. You’ve already done too many amazing things for that child to come even close to failing.
Hi Reagan,
have just read your story in our Readers Digest. My Daughter has a little aboriginal boy she is fostering and he has CCMS his life espectancy when she began fostering was 6 months he is now 7 and 1/2 years old and doing all of the things she was told he would never do. His condition is not as severe as Piperjane’s but he has been a real challenge with not a lot of medical support. He attends school and is doing very well, He is the middle child of 5 in her family and is loved by all. Keep ut the good work, my prayers are with you Lettie Allen
Pip just wanted you all to herself, silly! She’s a very clever girl!
I’m just catching up… that’s what I do. Turns out I’m one of those people that walks around talking about “I’m so busy” … How did that happen? I’m just reading the crying and hysterics and turns out I’m so happy that someone else turns into crazy person. I just went to parent teacher conferences where it turns out that my child is brilliant and amazing and everything super great(why not, someone has to be perfect, in might as well be me) … His best friend has Down’s and the teacher asked about the mom of said friend … and I just started crying ??? WHAT … where do these things come from? You have a fan base… What the h e triple l, can’t you get this fixed??? Pills??? Something???
To answer your question: Y E S ! ! ! !
I will also add that I don’t think you had a meltdown over a “minor issue”. You just want to do what other moms get to do with their kids, and you can’t. So not only is that actually a huge issue, but it totally SUCKS. It’s okay to have a meltdown about it every now and then, Mama. You are brave and strong and positive and awesome every other day.
Oh man, yes…we have a million stories like yours where we’ve tried so hard to just do what other families seem to do so easily. Our daughter has a brain injury due to encephalitis – she loves music, but will frequently become overstimulated by noise, crowds, lights, etc. Her screaming then becomes like a pterodactyl caught in the wheels of a car. While we feel awful for torturing her with these new experiences, we feel worse about her spending most of her day in her room…where it’s safe…where she loves to be. Hang in there, mama. One of these years she’s going to rock that Christmas concert.
Oh, that has happened to the rest of us! You really truly believe this experience will be JUST what tehe child enjoys, only find out you were, as ever, completely wrong. I took my 2 year old to the library the other day, thinking he would love the train table, books and other children. He decided to hit 2 sweet children and climb on the play kitchen and try to pull the fire alarm. My kids have pooped on doctors, puked on the Easter bunny & screamed in terror of Seniors in a nursing home.
I am sorry that your plan was foiled, but you should keep trying. Next year she will probably love it. 5 is a different animal from 4.
And crying is always ok.
Please don’t beat yourself up about staying when Piper seemed uneasy – I would do the same thing because I second guess most of my parenting but here it is…you stayed because you knew something she didn’t, you knew that she would love the music once it started – she did not understand that. You did what you did because you were trying to do something special for her, you did it because you are a good mother. Of course she was happy once she was back in her room where she knows what’s going on, everything is familiar. If there hadn’t have been such a long wait, she probably would have liked it but there’s always next year! It’s hard when we have certain expectations of a ‘special’ day but some of the boring, same ol’ same ol’ days end up being special just because you’re with each other! I know you cherish those days and something different would be nice so hopefully something else will come up again soon.
Jenna
I have these more than you will ever know. I am getting SO much better though. I remember taking Graham to a mom and me music class that I was SO SO excited about. He would have NOTHING to do with it. Sat against the wall the entire time while all the other moms and kids were mocking me with their “look, we are having so much fun” ring around the rosy. I cried in the car the whole way home that I paid for this nonsense and we couldn’t even pull it off. I find I get my hopes up so many times and how I imagine things will be and kids being kids, always let you know that you are not the boss of ANYTHING. Ever.
Reagan! I know exactly how you feel. My son is disabled also and this year my father in law and his girlfriend decided to take the whole family to something called the north pole experience. I really didn’t want to go because I
Knew my son wouldn’t enjoy himself and I was right. He hated it! I was so sad seeing the other kids enjoy things he should be enjoying and wasn’t enjoying (did you get that?) anyways I felt horrible when we left. I cried and cried and then got over it because I have an amazing little boy who is my world and for that I am grateful!
@Lettie Allen:
Please contact my daughter at the blog mentioned on Regan’s blog. Lifeasaleach.blogspot.com. She would love to talk to your daughter about her son. Her little girl has CCMS.
Isn’t it a requirement of motherhood to freak out about the not so big deals? I think it’s so we can hold it together for the biggies. Crack up the iPod and have a private post Christmas dance party
I think your tops!!
I’m sorry mama, happens to all of us in some way or another. My kiddo is 4.5 (birthdate right near Pipers in May!) and he is a super duper awesome little dude but very sensitive & bull-headed at some things. Usually having to do with social situations or noise. This Holiday my folks threw a big party with everyone I have known since I was teeny and my brother & his family were here from Switzerland and I just wanted to sink into the warm awesomeness of a packed house of loved ones for only one night. My kiddo decided that he did not feel the same way. he covered his ears and cried and screamed and did the clingy treefrog thing forever, giving the stink eye and even a few “NO!” screams to my friends and loved ones as he wouldn’t leave my arms. All my friends children the same age were FINE & dandy. I felt angry & annoyed that my kiddo couldn’t just be ‘normal’, this happens a lot, not every time but a few times usually at clutch times when I am really feeling like I want o be social and around friends/family & my kiddo retreats (into my bosom). Finally my mom played with him in another quiet room for a while & I could chill out and hug & relax and soak it all up and shake off my annoyance…
So it happens
Wish it didn’t. This parenting gig can be a exhausting at times 
but in a beautiful way.
xoxoxo love the pictures, love everything about your blog everytime I read it…daily!
Don’t beat yourself up Reagan. You just wanted to share a really wonderful experience with Pip but it didn’t work out. Maybe well-meaning Mrs. Santa pushed Pip right over the edge. I hope this one unfortunate event doesn’t deter you in future. I am in awe of the things you do and the things you endure for the love of your little girl.
Oh honey. I can’t tell you how many events/places/things we’ve wanted to try with W. that he’s balked at, freaked out over, just refused, (including all birthday parties) since he was about 2 1/2. It’s just human to have tried to get her to go and like it. YOU know that the end could be fun, and you also just desperately want to be like those other parents with their regular old kids, (I call them “Typicals” now, for typically-developing). It makes you feel grinchy in all kinds of ways – to your kid, momentarily, to the other people around you, to the parents of the typicals you envy. You should have seen me in the kitchen the other day, listening to my husband talk to his sister on speakerphone about her kid’s 6th birthday party which was just “crawling with 6 year old boys in Star Wars costumes and lightsabers”. She was so happy and satisfied, and I was being the bitchiest, nastiest eye-roller anyone stoically doing dishes could be. Because we’re sweating our nuts off here tryiing to figure out a)if W REALLY wants a party as he says he does, b) if any of his old friends will want to come to said party since they’re all involved iin their regular-kindergarten world, and he goes to a special-ed kindergarten and doesn’t really play with them anymore and c) what kind of party we could have with the new special-ed kindergarten gang: what will they like and what will freak them out? We’re not throwing a Star Wars party, for sure — mine and those kids jsut aren’t like that.
anyway. It’s ok to get the blues about it, is all I’m saying. You buck up just fine and do right by YOUR kid in the end, and that’s good mothering. So is trying the new things.
xx Emily
ps bangs getting lots of compliments! had to go out and by red lipstick I’m so fabulous. W2 (the baby) keeps pointing at me and saying “paint”!
does it make me a bad friend if i laughed out loud and said, “oh god.” when i read the part about piper kicking you in the privates? if so, i swear i’ll make it up to you.
i’m sorry shit sucks sometimes. or…a lot of times.