Friday, November 25, 2011

Thankful, but not yet Wise...

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Life is good. My boys are healthy, and for the most part happy, and I am feeling so grateful for it all.  Which coincides nicely with the holiday that is supposed to be all about thankfulness and gratitude.  Yesterday was Thanksgiving and this year we celebrated at my parents' house.  All I had to do was get up, go to yoga class (yay! ME time on a holiday!) and then show up with boys who were clean and dressed, some mashed potatoes & a green salad in hand and then be available to help out where necessary for dinner and clean-up. Considering the insane schedule I've had over the past few weeks, this was luxury.

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From left to right: My Mom's Mom would have been proud: She always wanted a photo of the holiday tables...; My sister made the pecan pie (using Grandmommie's recipe) Mm-mm; my Mom got crafty and made a chocolate cake in the shape of a pumpkin-adorable!; Turkey's ready!



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Mom getting the meal ready; Elijah taking a nap; Uncle Bill, Davin & Christian watching a movie; and My sister & niece checking out the Black Friday deals



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Grandmommie relaxing; Charles pouring champagne; My nephew playing video games; Me- taking pictures

It was a regular holiday- probably not unlike many family's holidays around the country, but I am reminded of how blessed we are to have each other and to have these moments to savor.  One could say that I am on a bit of Thanksgiving high right now.  Not to worry- once the effects of the pecan pie wear off, I'm sure to be back to normal.
Last week at Christian's preschool, the kids were each asked what they are thankful for.  Christian said he was thankful for Mommy and Daddy. (Guess Elijah has been stealing too many of the train tracks during play time to make the list...) So, I feel a list coming on: What I'm thankful for, and What I'm not so thankful for:

I'm thankful for my family. Despite the occasional heat I might get for choosing to....let's say, make mashed potatoes instead of sweet potatoes, they "get me". I don't have to put up a wall or pretend to be someone I'm not.  They actually like and accept me for who I am.  
(Although, it seems yesterday they would have liked me more if I brought sweet potatoes...)

I'm not so thankful for a 14 page Medi-Cal application. 
Let's spell this together: P-R-O-C-R-A-S-T-I-N-A-T-I-O-N.  
I'm getting it done by the time the weekend is over.  I have to.
Even though it sucks.

I'm thankful for my friends.  These are the people in my life who challenge me to be a better person.  The last few years has changed the scope of my friendships- having children has bonded me to people in different ways. For some friends, the commonality of having children has been an incredible bonding and growing life change.  For others, our friendship regardless of children has grown truer and stronger with each passing year.  Differences in our life paths strengthened our relationships and shows what genuine care and respect we have for each other.

I'm not so thankful for having client files go completely missing off of my computer. Seriously.  What the heck happened?  
And before you ask...NO. I had not backed up recently enough to recover that one.

I'm thankful for little getaways. I recently had a fabulous 24 hour getaway with my best friend- just catching up, laughing, eating, pedicures and watching movies and I felt 23 again.

I'm not so thankful for being back from said getaway for a mere 10 minutes before having all former stress return instantaneously. De-stressing completely undone and I'm back to feeling 40 again. Sigh.

I'm thankful for the fact that I have a body with the ability to move in skilled and careful ways.  This may sound crazy, but I reap such benefits from dance and yoga and I appreciate it even more as I am a daily witness to how hard my baby boy has to work to physically accomplish the little things.

I'm not so thankful for how quickly time passes.  I strive every day to live in the moment, and yet those moments are swift and fleeting.

I'm thankful that people sometimes pleasantly surprise you.  I am going to end with this one and share a story that happened recently:
I have written in the past about a Mom at Christian's preschool who I can't figure out.  It seems like she has been blatantly ignoring me for some time and I recently decided to march right up to her, smile, and say, "Hi! How is it going?!"  I got a little insight into that last week.  I was leaving Christian's preschool, when I spot this Mom sitting on a bench with her youngest (in a stroller) at her side.  Upon seeing me, she beams with a giant smile and says, "Hi!!!"  I was surprised, because this is a far cry from how she has greeted me (if at all) over the past year and a half. So, I say, Hi!  She asks, How is your littlest one doing? (Who was not with me at this time.) And I say, He's doing great! He's definitely behind developmentally, but he is a sweetie and he's just doing what he's supposed to be doin'! How is your littlest one? She says, She's doing good.  She is a year old already.
Me: A year already? Wow- the time flies!
She: Well, she doesn't look one year- she's very small for her age.
Me: Yeah, well, Elijah is small for his age too, so I get it.
She: Well...she's really small. She's not even on the growth chart.
Me: I hear ya- Elijah's not on the growth chart either. (Well, technically, I think he is still on the chart, but barely.)
She: Well...we found out that she has Dwarfism.
Me: Oh, really?

(Me internally: Oh............REALLY? So this might have something to do with why I have been getting the cold shoulder.)

We talked for a few minutes more and then I had to go.  But, I left with much on my mind.  I wasn't wrong about the fact that I was getting a cold shoulder, but I was totally wrong about why. The explanations have many possibilities, probably most likely being that when you get news that temporarily turns your world upside down, it's not easy to process.  For all I know, this Mom was avoiding everyone.  Maybe even me particularly.  Maybe because she knew in some ways we had something in common and that might not have been a reality she was ready to accept.  Maybe it looked to her like I had it all handled and she didn't yet.  Who knows??  But I know it wasn't coming from the same place I thought it was. The reality is that she and I DO have something in common: We face the fact that society will see our child as different before they see them as the same. For me, I'm settling into this role.  I've found that as long as people get a chance to just be around my youngest son, they don't see him as different.  They see him as just Elijah.  Not everyone will have the opportunity to spend time with my son, and there will be times (as there already have been) where I am choosing my words to help people understand that different is okay, and even good, and even sometimes...special....though not in the way some might have thought... This Mom will find her way. And along the way, I hope she'll see that I am there for her, because I think being a parent to a child with special needs- regardless of the diagnosis- creates a community of acceptance.

I was surprised by that Mom.  I was pleasantly surprised, and I'm reminded that an open mind and an open heart is the best way to go.  We never really know what someone's circumstance is.  We can make judgements based on how they look and how they act and what they say, but until we really get to know them, we just don't really know. What is that saying? A wise man knows he knows nothing.. ? Or something like that.  Time to remember how little I know...

I'll close with an impromptu photo caught today of my firstborn playing with a bunch of older kids and having a blast. This moment brings into focus all kinds of thankfulness: for the sweet boy I call mine, for the kids who so lovingly took him under their arms, for the beautiful fallen leaves, for the joy that a pile of fallen leaves can bring...

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Wednesday, November 16, 2011

The Buddy Walk 2011

On Sunday, we celebrated our second year of involvement with the DSALA's local "Buddy Walk", a national charity designed to raise money for awareness, education and programs for individuals and families with Down syndrome.  It was a beautiful day.  We met up with 23 of our friends and family members to attend the Buddy Walk this year.  I had goals for this year's Buddy Walk. I was dreaming of a team of 25+, raising funds of $5000, "Elijah's Chariots" team t-shirts and a large prop chariot for the kids to ride in.  Alas, my goals and plans were bigger than my reality to achieve them all.  I had to make a shift in my perspective.  The reality for me this year was that just around the time of the Buddy Walk, I had a wonderful explosion in my business.  Since my business is part of what supports my family, I have to make it the priority, despite my best intentions to fulfill all of my other goals.  I put aside the idea that I fell short of my goals, and looked to what did happen:  Our team of 23 raised $2,160 and showed up with smiles on our faces this last Sunday.  I owe a huge thanks to my brother, Bill, who took initiative with the fundraising and added $915 to our overall donations!!  Thank you, Bill, for being a great brother, a great friend, a great Uncle and turns out...a great fundraiser!! (I never doubted that for a second!)

The vibe this year was much different than last year.  I was relaxed and looking forward to spending the day with my team and seeing friends from the Ds community. Last year held a little more anxiety.  It was nice to be rid of the anxiety and able to just enjoy the day!

Our Team, "Elijah's Chariots"! (Though we couldn't manage to rally every member for the group photos...)
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These shoes are made for walkin'...
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Friends (clockwise): Lori and Lila, Kathy and Maddie, My brother Bill and Elijah, Denise and Kiersten
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Elijah was a happy camper- great weather and a group of people who love him.  What more could a little guy ask for?

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The "Walk"...which is really more like a parade.  Frankly, after a busy work week, I was thankful for the short and relaxed stroll!

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Christian and Elijah (!!) taking a little ride in the miniature jets.  They both loved it!

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Everyone doing the walk- including baby Della- the youngest team member!

I am so grateful to everyone who donated and supported us in the walk, and especially so to those who came out and showed up for us in person!  I want to thank: My Mom and Dad, who just never hesitate to be there for us and would do anything to show their love and support for Elijah; My brother Bill, who rearranged his entire work day to be at the walk with us, helped raise almost half of the funds, and who is all around just a great guy; My best friend Denise and her daughter Kiersten who are like family to me and always find a way to make my day brighter; Kristi, my dear friend, who despite a thousand other commitments on Sunday showed up simply because I asked. She rocks.; Kathy and her family- Eric, Abby and Maddie. This time last year I was just getting to know Kathy and now she is one of my closest friends.  She is true blue and never ceases to make me laugh; Lori and her daughter, Lila who I've know since our firstborns were 6 weeks old. I couldn't have made it to where I am without her support and I love her to pieces; My friend Amber, her husband Bill and their baby girl, Della who I have laughed with, cried with and prayed with. It is a blessing to have them back and living in LA again- right where I like them to be!; Judy, her husband Jason and their two little ones, Tanner and Travis.  Judy and I have known each other for close to 4 years now.  We bonded over trying to get the "pre-baby body back", but found substance in our friendship as life threw us challenges we weren't expecting; Last, but definitely not least, my hubby Charles and our babies Christian and Elijah.  I never knew how full and rich my life would be before you. My heart literally hurts with love and gratitude for you all.  My boys don't read yet, but one day I hope they will stumble across this blog and despite the many mistakes I'm bound to make as a Mom, will know that they are loved. Truly. Madly. Deeply.

The Buddy Walk 2011 was joyful and relaxed and infused with love.  I'm not sure that can be topped.

Until next year...
When we have T-shirts.

...And a CHARIOT.

Wednesday, November 9, 2011

A Mother's Intuition

All day long on Monday, I felt the on and off need to cry my eyes out from relief.  I blame my busy schedule for not really allowing me the chance to just break down.

Sunday night, after an amazing weekend with my family, we were sitting down to dinner all together.  I had made a Jambalaya, and had prepared enough for everyone.  Even Elijah's was blended down a bit to make for easier eating and dampened down so it wasn't too spicy (though he seems to enjoy a little spice and kick to his food I've noticed...) I sat down, took a spoonful of food for Elijah and fed it to him. About 1 second later, Elijah started crying inconsolably and coughing as though he were trying to get something up.  He didn't let up and the crying got worse.  It was obvious his airway wasn't blocked, but I took him out of seat, held him at a severe angle facing down and gave him some stiff blows to the back just to see if he was trying to get something out. ....Nothing.  I did a blind swipe of his mouth to see if there was anything in there that was stuck, and...nothing.  I thought I felt a tiny hard piece about the size of a grain, but couldn't really tell, and in the process, ended up causing Elijah mouth to bleed.  I felt horrible and was really starting to get panicked.  It was clear that nothing was obstructing his airway, but I thought maybe something foreign had gotten into the food, or he's picked something up from the floor beforehand and had squirreled it away.  Perhaps something small, but sharp was lodged in his mouth?? 

We piled into the car and headed for the ER at the local hospital just around the corner from us.  I was probably equally as worried about Elijah being exposed to something in the ER, as I was about what was going on, however we were too worried to have done anything else.  We were seen by a nurse shortly after arriving.  I told her what was happening, and about how his mouth bled when I did the blind sweep.  She told me that the tissue at the back of our throat is so sensitive, that even a gentle sweep can sometimes cause bleeding and to try not to worry that I had done any real damage. We were led back into an ER room and began THE WAIT.

A female doctor eventually got to us and at first glance at Elijah (who was temporarily calmed in my arms) said, "Why is this labeled in orange?? Orange is an emergency and he seems fine."  As soon as I peeled Elijah off of me, he began wailing and coughing again.  I explained what happened and also mentioned that he has Down Syndrome and that if something is in his throat it might make it harder for him to get it out because of his low muscle tone. She said, "He doesn't look like he has Down Syndrome."  ........Ummm, o-kay.  I decided to just simply say, "Well, his physical markers aren't very severe, but he certainly has it." They decided to start with an xray.  Both Charles and I were skeptical that an xray would show anything.  It wasn't as if he'd swallowed a quarter (We've already been through that one before with Christian!) and anything Elijah would have access to would probably be of a softer or even more environmental nature (a sharp leaf from the floor, a piece of gristle from the Jambalaya, or even something plastic, but we went along with it.   Christian stood with Charles while I held Elijah during the xray.  Even though Christian was in good spirits during this whole adventure to the hospital, he was clearly distressed. He clung tightly to "Leo" (the favored stuffed Leopard who is his inseparable playmate and alter ego.) The waiting continued and it grew later and later.  Around 9:30pm we were told that the on call pediatrician would come down soon.  I knew "soon" was relative, and asked Charles to walk home with Christian so he could get him to bed. (Luckily we were only about 3 blocks from home, so a walk was not an impossibility.) I waited another hour and began to worry that I wasn't going to be able to do this all by myself.  I couldn't even go to talk to a nurse and ask how much longer it would be, because Elijah was attached to the monitors and I couldn't just leave him on the hospital bed and walk away. My cell phone wouldn't get reception for calls, but I was able to get a text out to my Mom, who arrived at the hospital even before the pediatrician came down.

The pediatrician confirmed what the other doctor had told us, which was that the xray didn't show anything out of the ordinary. I informed the pediatrician that Elijah has Down syndrome and my concern was that something the xray wouldn't see could be lodged in his throat, and because of his low tone, he might not be able to get it out.  The doctor asked if he had any heart problems.  I said, "No.  Luckily his heart has always been perfect."  Elijah was beside himself.  I was sensing confusion and over-tiredness making the situation worse. The pediatrician said we would get a Barium Swallow Study and that should show us if there was anything at all in his system. He said, "We're going to admit him, but let's see what the Barium study shows."  We were led into another part of the hospital and 20 minutes later the on-call Radiologist showed up.  She was surprisingly young and had a very genuine energy about her.  I was worried that in this state Elijah wouldn't even drink the Barium to allow the study to work.  Luckily he took a few good sips, and then I supplemented with a little syringe of the Barium also.  There was nothing.  The doctor said that she was confident that there was nothing blocking or obstructing his esophagus and we should get home and get him some rest. I told her that they wanted to admit us, and her first response was, "Why??" Interestingly enough, this was the only doctor I didn't inform about the Down syndrome.

We went back to the ER to wait some more and I started getting impatient and told a nurse, "Listen, we want to go home.  Who do I need to talk to?"  The nurse looked shocked. "But, I thought they were going to admit him."  I told her that the Barium Study showed nothing, and I can't imagine what we would be admitted for.  It seemed clear that Elijah was in some sort of pain, but there was clearly nothing in his system to worry about obstructed airways or anything that was extremely dangerous.  At that point I was sensing that whatever happened ( a sore throat made worse by some spicy food?  some small scratch at the back of his throat?) was just made worse by the fact that he was 5 hours past his bed time the day after daylight savings time. The nurses scrambled and said we would have to talk to the doctor.  30 more minutes later the original female doctor who helped us came back in and said, "I understand you want to leave, but I think he should be admitted."  The conversation went something like this:
"Why do you think he should be admitted?"

"Well, we should monitor him to keep an eye and make sure he's okay."

"But the Barium study showed there is nothing stuck, so why wouldn't he be okay?? At this point I think it's worse for him to be here.  He's 18 months old and it's midnight.  He needs to get some good sleep and he's clearly not going to be getting it here."

"Well I think he needs to be monitored and if you want to take him home then I would need you to sign an "Against Medical Advice" paper, because I think it's dangerous for you to do so.  I'm just trying to do what's best for your baby."

"Yes- well I'm his Mother, and I'm sorry- but nobody in the world knows him better than I do. I'll sign the papers."

"Okay, it's just that I've seen a lot of crazy things happen and I'm just trying to do what's best for your baby."

"I'm sure you have. Let me ask you something: Do you have kids?"

"Yes I do, actually."

"Then, you know what I mean about the power of a Mother's intuition.  And while I'm sure your experience is different from mine, being that you are a Mother and a Doctor, I know what I know when it comes to my baby. We might be back here first thing in the morning, but I'm taking my baby home so he can try to get some sleep tonight.Why don't you get us the papers so we can get out of here."

We waited another 15 minutes for the paperwork and this is what it said:
"I believe your baby should be admitted for observation to monitor his heart and respiratory status. You would like to take the baby home against my advice that could result in worsening of his condition or possibly even cardio pulmonary arrest."

WHAT???!!!!  Now it's his heart???!!!  And then  I realized IT, as my mind quickly clicked through the sequence of events.  Two simple words (besides Hospital Liability) are...Down syndrome.  Funny how that doctor didn't even think it was worthy of an "Orange" emergency label when she first came to see us.  Then  the xray showed nothing.  Then the Barium study showed nothing.  But, both she and the pediatrician asked me the second after I mentioned the Down syndrome: "Does he have any heart conditions?"  Even though my answers were no, Elijah's diagnosis makes him a bigger risk for them.  But...I. know. my. baby.
Better than anyone else.
(And it didn't hurt anything that my Mom was there-who probably knows him third best of all- and she thought I was doing the right thing too.)

I took him home, put him to bed and he was asleep 2 seconds after his head hit the mattress.  He slept all night, woke up at his usual time 7 hours later, ate breakfast, took a bath and was back to his happy self without a moments glance backwards. The hospital has two little words that make all of the difference for them and I have mine...Mother's Intuition.

I'm glad we went in, because it gave me peace of mind to know that we weren't dealing with some foreign object lodged in his throat.  We'll never completely know what happened though, because Elijah's not old enough to tell us.  So, I listened to my instincts and decided to stand by them, even though it was really hard.  It was really hard to stand in the face of someone who is telling you that they are trying to do what's best for your baby. It was really hard to stand firm and strong and know that I know what I know...even though I don't have proof.  And ultimately, my intuition was right.  My intuition has always been right.  Which doesn't mean I've always listened to it...

I'm feeling emotionally drained, but needed to get this experience blogged about so I can move on.  Since my time has been so scheduled down to the second, I have not had one minute to myself.  And there are a few people we love deeply on the East Coast who, I know, would love to see these:

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My littlest dragon.  I don't think there is any taming this dragon...I think he's the one doing all of the taming in this costume.

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My Blue Sea Dragon.  Christian set his mind on being a dragon, wanted Elijah to be a dragon too, and chose this costume as his favorite.  

His choice set the stage for our family costume...

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The princess, her knight in shining armour, and two cunning little dragons.
AKA Me and my boys.
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