Wednesday, January 21, 2015

You're not saying anything outloud. But I can hear you.

When I woke up this morning I fully intended to accomplish the following:
1. Sing Happy Birthday to Bridgie.
2. Let her open one of her presents.
3. Sing Happy Birthday again over a donut.
4. Write a blog post about the blessings, struggles, and miracles of Bridgie's first 5 years.
Well 3 out of 4 is not bad.  But as fate would have it or as my so called life would have it #4 was derailed by something birthday related that I would classify as a struggle but will eventually evolve into a blessing and maybe fall into that miracle category.
As I was loading the kids in the van to head off to school, Eoin asked if I would send in cupcakes to Bridgie's class for her birthday when she returns after her week off.  I said probably cupcakes or cookies.
"Well, what about for my birthday (February 10th)?" Probably cupcakes or cookies.
"Well, you will only have to pack my chocolate chips and drink for lunch that day."  What? Why?
"Only kids who finish ALL of their lunch can have the birthday treats at school."  Huh.
If you have ever been at a school cafeteria during lunch hours, you have likely run into the lunch Nazi.  The person who thinks their job is to police the children, shame the children, and berate the children during their  20 minute lunch break.  EAT. And EAT it ALL.  This Nazi does not care if you are diabetic, have an upset stomach, or heaven forbid have food issues and only like certain things.
And this Nazi believes that every parent who packs their child a lunch expects that their child should eat EVERY morsel of that lunch.  This Nazi does not care about things like Autism, sensory processing disorder, ocd, or any other disorder that is not visible to the naked eye.  And even then, people with disabilities are a nuisance and should be taught to 'get with the program'.
For me, I have seen first hand and experienced first hand the shaming techniques employed by this Nazi.
She has got no use for the likes of me.  While she might not say it out loud, I can hear her disdain and judgment loud and clear.
Well, yes, yes, you did they just got the snot beat out of them by their parents or teachers or were sent away to institutions because they could not 'get with the program'.
So, since my son does not eat ALL of his lunch he is not allowed to participate in the birthday celebration.  Gee. How kind.
Let me paint you the picture of what my child does at lunch.  He scurries over to his own table facing the stage with his big bulky headphones on. He hurriedly opens his lunch bag eats his chocolate chips and gulps down his lemonade. Shoves the trash back into his back and quickly zips it back up so no one can see what he has not eaten.  His apple, his popcorn, his chips, or his cookie.  All of which his mom has packed in case one day he can handle eating more at school.  He sits with no one.  And he likes it that way.  His mom is slightly uncomfortable with this arrangement but is waiting for the right time to intervene with yet another modification for her son.  Yes. She is THAT mom.  The one that always has suggestions, the one that everyone averts their eyes when they see her coming.  No one says out loud what everyone is thinking because then someone might be uncomfortable.
Well. I hear you. Loud and clear.
 Gee. Why did I NEVER think of that?  I love struggling with my child to take a bath or shower, brush his teeth, change clothes, sit at the table, touch a vegetable.  I love it.  It is energizing in the most splendid of ways.  I love explaining to my other child, family, and friends why he does everything he does and not to take it PERSONALLY.  Because I too LOVE being the center of attention.  My husband loves that we have to take separate cars to the same function in case of overwhelm or a meltdown.  We are so blessed to have these challenges because we planned on ALL of it.
Yup, my kids are more 'special' than yours and that's exactly how I love it.
Ugh.   So, the morning did not go as planned but as I learned long ago.  This too shall pass.  I will put away my vinegar and grab the honey and head off to 'talk with someone at the school'. Again.
Pray for me that I can put on my fakey fake face so as not to offend, upset, or make anyone uncomfortable.
Life is brutal.
Life is beautiful.
Life is Brutiful.
LOVE wins.  Eoin and I will find our way through this.  I will make mistakes and I only hope one day he will understand that everything I did I did out of love and that he will let me say.
I'm sorry.
Just keep moving forward.

Wednesday, October 2, 2013

The most wonderful time of the year.....

Fall, Y'all!
Unfortunately, It is not very fall like right now in Maryland.

So this is what we are likely to be doing...

After school today.


Saturday, August 24, 2013

Follow Up

Welcome to the Jungle
I took Eoin to the ENT yesterday for one last opinion, trying to make sure this had nothing to do with sinuses, allergies, or post nasal drip.
I was assured by the ENT that all of his airways are clear, his tonsils are not enlarged, and that more than likely we are experiencing a tic disorder.
I feel relieved that there is not a 'medical' issue here but at the same time am anxious about how this will play out with Kindergarten.
What gives me hope is that he never did the gasp during preschool.  So, I am hopeful of the same for Kindergarten.
I have an appointment to meet with the guidance counselor at school next week to make her aware of the situation.
At this point I do not believe I will go into it with the teacher.  It has never been a problem in school and until it is I do not feel it necessary to share.  I don't want him treated differently because of something that may or may not happen.
I feel that alerting the counselor, will be beneficial in case he does do it and is sent to the health room because they think he can't breathe.
As for me and my family, we shall no longer talk about the tic in front of Eoin.
All research and literature I have read indicates that ignoring it is most beneficial.  If you want to talk with us about this please do so when Eoin is not in ear shot.
He does not seem bothered by it, in fact requested going to see Mr. Hockey playing ENT EVERYDAY, so he could play with the mask with the light on it.
We will continue to learn more and help him if and when it is necessary.
I am hypersensitive to the sound, so if you see me gritting my teeth that may be why.
We love you no matter what, Eoin!  There is nothing you could do to change that.
(and BTW, you missed your calling, Amish Farm Boy)

Thursday, August 22, 2013

Simply ask

Rock a bye baby...
Evenings at our house are chaotic at best.  As are most homes with small children.
Typically, I bathe and get the two older children ready while Jerry bathes and gets Bridgie ready for bed.
For a long time I would read to and get the older two to sleep while Jerry did the same with Bridgie.
This summer, however, we have reversed the putting to bed roles.
I guess one night I just scooped her up and took her upstairs and from that night on I was hooked.
We still rock Bridgie, 3 1/2, to sleep and then place her in her crib.
Since she is no longer taking regular naps this usually means she's OUT by 8 pm.
The act of rocking a child to sleep is one of the most humbling, mind soothing, body relaxing, and soul lifting experiences.
I am usually reduced to tears as I recollect on all of the ways I have wronged my children in that particular day and usually wind up pleading to God to show me the way to do better.
It is a much needed release from the tension of the day and I usually spend at least 5 minutes extra after she has fallen asleep, just looking at her sweet nose and chin and smelling her soft, clean hair.
I'm not going to claim that I have become a better mother because of this ritual but it definitely has a stress reducing, relaxing effect on me.
As school threatens on the horizon, the roles will most likely switch back as Erin and Eoin will need to get to bed earlier and I am okay with that because I know Jerry enjoys and needs that time with her too.
So the simple task of rocking a baby can have a profound impact on one's life.  So too can the simple task of asking for help or more specifically asking for prayer.
This summer has been particularly trying in terms of managing three kids, their needs, and their boredom.
We have a wonderful neighbor who often helps keep the boredom at bay.  But as far as leaving the house for fun trips to the pool, or a state park, like I originally intended for this summer, that has not materialized.
This summer has been extremely isolating for the four of us.  When Jerry is with us we are able to 'get out'.  Eoin has had issues with not wanting to go to the pool.  I don't have any idea what triggered this but he does not want to go to our pool.  Other pools, beaches, ponds etc... he is fine with. And man does he love to swim.  So it has been heartbreaking on many levels.
The physicality of taking Bridgie, who still resides in the baby/big girl stage, places is daunting.  She still wants and needs to be physically carried and or restrained ( you all do it to your regular kids too, it's not a bad word) when out in public.  Cognitively speaking, I would say she behaves and understands like a 2-2 1/2 year old.  The physicality of carrying a 41 pound toddler with low muscle tone, specifically not holding on, is back breaking.
Couple all of this with the stress of Bridgie needing at least two surgeries, teeth and eye, and Eoin's gasping tic, and this mother who likely has her own sensory issues is burnt.
I have been aware of the potential of the tic for almost three years and would bring it up to certain people, only to have them stare at me blankly, not able to understand.
Yesterday I wrote about it here and posted it on facebook and within an hour had three people contact me because they could relate, two of which have children who currently exhibit similar sounds.
What a relief this was to me, for someone to say YES!!! This is a tic and my child does it too.
I can't even type that without bawling.
Most of my life has been spent keeping my feelings, thoughts, and ideas inside but the weight of motherhood, and all that comes with it, and a diagnosis of Down syndrome has awakened in me a need to share.
Sharing my burdens, fears, and worries, spreads the distribution of their weight so that I do not drown in it.
As a stay at home mom, who does not really enjoy phone conversations--especially with kids screaming in the background --yours or mine, who does not get out much, and who is extremely introverted, social media, facebook and blogging, have been a God send to me.
Say what you want about me or other's like me who 'overuse' facebook or who share too much in their blog.  I do not care.  They, facebook and blogging, have saved me.  Mostly, I use these two tools as ways to give myself pep talks, to sort out ALL that is racing in my mind.  To reach out to a universe that largely requires nothing in return.  Say what you will, call it sad, then realize you are not really my friend and hit that convenient button that says 'unfriend' and frankly I probably won't even notice. 
If other people's posts or 'oversharing' bother you, GET OFF FB, it's likely not for you.  If you think people are BRAGGING by sharing their joys, GET OFF FB.  If other people's pictures, recipes, and crafts make you feel less than GET OFF FB.  If you 'can't stand' one more political post, complaining post, or prayerful post, GET OFF FB.  Facebook is a choice. 
Choose if it works for or against you.
Facebook and blogging work for me, perhaps in the way soap operas worked for our stay at home mom's.  I use social media to learn from, to cheer me up, to vent, to try desperately to stay in contact with the few friends I have left.  I use it to motivate myself athletically, emotionally, and spiritually. I use it to try to make a difference to other people as has been done for me.  I use it to fundraise for Best Buddies and try to corral others to help.  I use it to motivate me to get to gettin' on that mountain of laundry.  Fold 3 loads, look on fb for 10 minutes.
I don't roll my eyes, shake my head or fist, declare stupidity, or feel bad about myself when I use fb or blogger.  I choose to look for the good, the motivating, the amazing in other people.
I don't share my thoughts for you on blogger, though if you like to read it great, I share my thoughts looking for clarity in my life and release of stress and loneliness.  I seek someone or something that will teach me, validate me, and or share with me.
I will continue my path with social media until my life, with three kids in tow becomes easier for me to manage physically and logistically and I can get out and have face to face relationships with many of you.
While my life is not hard, my life is filled with hard things right now.
I pray for you social media friends, won't you pray for me?

Wednesday, August 21, 2013

Part of the pile

Part of the Mound
that we are dealing with around here is this.
Eoin has been making a gasping noise on and off for about 2 1/2 maybe even 3 years.
Well it has come to a head of 24/7
Our doctor believes it to be a tic disorder
which many children get and that go away on their own.
I hope that this may be true but am not sure it is not something else.
I feel compelled to push forth to rule out some random medical issue.
Upon examination his 02 levels are perfect as well as his lungs.
I am sharing this in hopes that someone will go
Hey, yeah, that is a tic, my son/daughter/cousin's uncle, does that.
Despite the annoyingness of it, it worries me a lot, so when he is doing this 24/7 I am worrying and feeling guilty that I am not finding an answer for him.
Not the best quality sound but please give a look and listen and let me know what you think.

Wednesday, August 14, 2013

Here's your sign....

The color red means the same thing in all languages.
Hot and Stop.
Even Bridgie gets this as of late.
When we pull up to a stop she says "wed".
Then signs hot and tries to say STOP  in Bridgidese.
So, why is it so hard for people to understand and adhere to the sign stop?
I spend more of my free time looping Crofton Parkway either in my car, on my feet, or on my bike.
There are stop signs at every cross street so when I am looping the parkway for the umpteenth time I inevitably see my share of non-stopping offenders.
We are quick to point fingers at teenagers or maybe even the older generations.
And of course it really can be anybody.
I mean we are all guilty of traffic errors and poor judgment.
But when you live in a community like Crofton or more specifically around Crofton Parkway you know you are going to encounter pedestrians at any time of day.  So slow down, the speed limit is 25mph for a reason. 
STOP  at the stop sign, then proceed with
The places that usually tick me off have been quiet this summer...Eton Way and Harcourt, only for new ones to crop up.
There is indeed a STOP sign at the intersection of Pleasant Meadow and Mayfair.  STOP at it.  There are plenty of kids who ride their bikes along Mayfair to get to the pool.
On my bike last night, I had to stop for not one but two cars pulling out of Crofton Country Club from the exit closest to Prince of Peace Church.  Cars that park at CCC and take the bus in to work. 
This is always a problem area and there is no STOP sign here (which is ridiculous).  So two cars
proceeded to peel out in front of me as if they had the right of way, not even slowing to look for peds on foot on the sidewalk.
As I continued my ride, I began to wonder why there is no sign there.  Up ahead, just around the corner from Duke of Kent on the Parkway, I saw our friendly Crofton Cop and he was parked and getting out of the car.  I thought perfect I'll loop around and ask him.  However,  he was standing in the middle of the street waving over two cars that failed to stop at the previous intersection.
The moral of the story, I suppose, is biking has opened my eyes to a brand new set of driving blunders and potential catastrophes.  From parked cars, to cars pulling out of driveways, to cars honking for you to get out of the way, to cars trying to pass you when there are two giant moving trucks in the road.
So to all those Car Bully's out there, I say here's your sign.
Pictures from google image.

Monday, August 12, 2013

I'm gonna wash that man right out of my hair.....

Locks of Love
In more ways than one.
Everyone loved these beautiful tresses.
And they required simple maintenance in the beginning.

But the longer they got the less love and more patience they required.

Until one day everyone was screaming and crying while Mommy 
brushed out the Rapunzel strands.
It  was decided to trim those glorious locks.

But in the spirit of all that is this journey with Bridgie, we could not simply trim the tresses.

We decided to donate all 12 iridescent inches to Locks of Love.

We think Lucy approves.
And Bridgie too!