Wednesday, October 2, 2013
Saturday, August 24, 2013
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
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 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
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
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!
Tuesday, August 6, 2013
I used to think Staring was rude...
Until it started coming from little kids.
I had high hopes for this summer at the pool.
But navigating the pool with three kids is a high anxiety roller coaster ride for me.
Erin is a good swimmer, Eoin is getting better, and Bridgie loses focus quickly.
Bridgie's idea of fun at the pool involves about 10 minutes of initial pool time, then quickly running to the snack bar for a "POP!!!", then into the baby pool, back to the big pool, and finally back to the snack bar for a "POP!!!!".
She is now even going over to the bag first to get the money and then sprinting to the snack bar. She runs over grabs onto the counter then looks back at me for the money then waits for me to prompt her "Bridgie, what do you want?" then she screams "POP!!!!".
The pool has freeze pops for 10 cents. The teenagers manning the snack bar have been great and I usually see them chuckle after she says "tank-oo" and blows a kiss.
With Bridgie's rounds around the pool, it does not make me feel safe having Erin and Eoin in the pool alone, therefore, we still usually wait till Daddy is home and all go together.
This summer has also brought about many stares. Usually, from children but some from adults as well. For many people, the realization that Bridgie has Down syndrome only set in this spring. I am guessing because she was usually in a stroller or in the baby pool last year it was not as noticeable. Now she runs around the pool like she owns the place.
Many, many, children between the ages of 7 and 10 have come right up near her in the big pool and just stared at her. Trying to figure her or it out. Usually, there are no words and then they swim away. The under 7 set are too busy navigating the water and the under 4 set just smile and bounce in the water with her.
One afternoon in the baby pool a Mom and her 4 year old were with us and the 4 year old was chattering away with us, wanting to know Bridgie's name, age, what shows she likes etc... the 4 year old flitted about the pool bringing Bridgie toys and eventually she sat down next to me and she said in a curious tone "Why are her eyes like that?" I looked at Bridgie and she was sitting in the water with her hands in the 'bubbles', the jet, and she was in her zone where she is kind of staring off into space. When she does this her tosis is in full effect so her right eye is nearly closed and her left eye is tracking outward.
I did a quick double take and decided to tell the little girl that Bridgie has strabismus and that her eyes track out away from each other, making it hard for her to focus them together. I then said but she can see just like you and will have a Dr. fix it for her soon. This appeased the lass and she flitted off and the mom smiled. She could have meant the shape of her eye but I did not think she would understand Down syndrome and since her mom was there I hoped that she might answer her other questions later.
I sincerely hope that her mom would talk with her about Bridgie later but who knows.
Another afternoon a little girl about 5 was in the baby pool with Jerry and Bridgie with no parent to be found. The little girl was desperate for Jerry's attention and when he did not really give her what she wanted she started 'messing with' Bridgie in order to get the negative attention. From teasing her, taking her toys, pouring water on her head, and then trying to push her under water. At this point Jerry picked Bridgie up and they left.
Unfortunately for this little girl, there was no parent present to teach her how to interact with smaller children let alone the bigger picture of someone with Down syndrome.
You can sometimes tell a parents stance on people with disabilities or differences by the behavior of their children, some come over and love all over her, some ask tons of questions, while others avoid at all costs.
It would be my hope that parents we see would talk with their kids about Bridgie or about Down syndrome and encourage their kids to ask questions to them and maybe even to us. Age appropriate reality answers is what we give.
The staring has been tremendous this summer and will continue to grow. It does not really bother me coming from kids because they are curious and trying to figure out their world, I only hope they have parents who will not shut down their curiosity by telling them only that "Staring is rude."
What questions do you have about Bridgie or Down syndrome? How have you talked with your kids about Bridgie or Down syndrome?
I love to talk about both!
Discussion will only make their world a better, safer place.