Monday, August 30, 2010

Research

Something has really stuck with me since the Moms' night I attended last week, and that is in regards to the topic of Research. I am learning that it is an exciting time in the field of Down Syndrome research. A mouse model has been developed that is helping scientists to understand the cognitive problems with people who have Down syndrome. There is also a significant link between Down syndrome and Alzheimer's Disease in that the brain's neurons seem to be effected the same way...and it is part of why nearly every older person with Down syndrome develops Alzheimer's. Did that get you the way it does me? It's like my brain hiccups over and over...Alzheimer's too? Alzheimer's too?

One of the women I spoke to last week commented in regards to a pharmaceutical treatment that could help improve cognitive function in people with Down syndrome, by saying, "If my son might only live to be 40, but would have a significantly improved life, I would want that for him!" What wasn't said, was what haunts me: That there might very well be that risk and that choice. A drug designed to improve cognitive function might very well come along with a handful of other side effects that could shorten lifespan. I mean, I laugh at these commercials: Are you suffering from weak bladder control? Take this drug and your symptoms could improve! Side effects include weight gain, seizures, loss of sex drive, profuse sweating, constipation, dizziness, and in some patients with high blood pressure could result in fatalities. I mean, SERIOUSLY?? Even though the pseudo-commercial I made up is not real, the side effects from prescription drug use is no laughing matter.  I have always been vehemently against long term prescription drug use as anything other than a last resort.  However, I have really never had anything more serious than occasional low blood sugar issues to contend with.

I spent some time looking at the current research and developments of a treatment that could improve the symptoms that come along with Down syndrome.  Notice that I do not say Cure Down syndrome.  There, of course, is no cure because Down syndrome is an additional copy of the 21st chromosome present in every cell in the body.  I also point this out because there is absolutely nothing about my son that I think needs "curing".  He is perfect.  Natasha, one of the Moms I met last week, told me the story of her daughter's birth: They did no prenatal testing and didn't know she had Ds until after she was born.  For something like 36 hours after her birth, they held her and breathed her in and thought, She's perfect.  When the doctors returned with their genetic tests that confirmed a Ds diagnosis, they were scared and inundated with a list of all of the medical complications that can be present.  But, what my new friend, Natasha, says now: That what they knew at their daughter's birth was really the REAL truth: She is perfect.  I like that modern medicine is not trying to change who these people are.  They are simply looking for breakthroughs that can improve their lives.  Once they tackle that problem, I personally think it might be worth a few research dollars to figure out what makes them (people with Ds) such loving souls, and find a treatment to give all of us who are so busy worrying what everyone else thinks to see love the same way.

My heart is heavy about the research a little.  It means that one day I may have to make a very difficult decision on behalf of my youngest son.  After reading a good bit of information on available protocols this weekend, I had to turn it off and walk away...and have a good cry.  I don't want to be responsible for this.  I don't want to have to decide shorter lifespan vs. quality of life.  But, as a parent, I want everything for my children.  I guess I wouldn't be a good parent if I didn't.  I'm thankful for Elijah as an infant.  I just get to enjoy him...and enjoy him, I am!! He's too little to have to dive too far into this information, especially considering that there are no clinical trials under way on humans yet anyway (though they seem in our near future- perhaps as soon as a year from now).  And Elijah has a little magic trick already: No matter how wound up I get about any subject, I can hold him and look into his sweet face...that lights up in a huge smile that magically wipes away all of my dark clouds.  It's a good thing that he is so quick to smile at me.  This way, no matter how many dark clouds pass my way, he'll use his magic and remind me that what's important now is simple. A smile. Love. Happiness. A complete family.

Enough said.

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And finally a photo of my complete family...

Saturday, August 28, 2010

Happy Birthday to me: A year in review

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thirty-nine.

What's the saying..."The difference a day makes." ? It's kind of mind boggling when I think about the difference a year has made.  Especially this past year.  Today is my birthday. In honor of it, I have decided to review the year- what has gone on, what I have learned, and what I hope to see for this new year. My 39th year of life. Wow.

The year I turned 38 started off a little rough, with what I have not-so-fondly nicknamed, The Wedding From Hell.  In life, and as a wedding designer, I  have never before experienced such entitled, ugly people.  It is sad to even have to say this, but that is how the start of my 38th birthday went- because The Wedding From Hell was on August 29th (the day after my birthday).  I went so far as to tell my friends and my family that we would not be observing my birthday until after August 29th.  I did not want any part of a fun or special day for me wrapped up in the memory of those two. I also suspected I was pregnant, but refused to take a pregnancy test for the same reason...

I hoped to be able to look back on The Wedding From Hell and say that I learned something valuable for my business...something that would propel me forward into more success as a result of dealing with these miserable people, but I did not.  I did, however, learn even more how to refine my judge of character.  I did learn and appreciate the fact that I don't have people like this in my life, and for good reason.  I did learn that no amount of money and no event notch in my belt buckle is worth that kind of energy.  I learned that the best part of being a small business and working from home, is the freedom I have to avoid clients like that.  So, I did learn something.  I learned how to avoid that.

I took a pregnancy test shortly after that event, and confirmed my suspicion: I was pregnant!!  We were thrilled, and like my pregnancy with Christian, things progressed easily.  The pregnancy hormones did me well.  I sailed through the first 3 months of my pregnancy, but when December hit, we had quite an adjustment to make.  On December 4th, I received the results of my amniocentesis that revealed our baby boy, Elijah, has Down syndrome.  We were genuinely terrified.  We had outdated, preconceived ideas about what that meant and thought our lives were never going to be the same.  It's true. Our lives never will be the same again, but it's a different picture than I imagined 8 months ago.  Our lives will never be the same because now we have two beautiful boys that will keep us busy and love us in ways that words don't do justice. Elijah came into this world, completely naturally, and without drugs on April 20th and it was the most beautiful experience I have ever had in my life.  I learned that when you're to busy or uncomfortable or distracted to have expectations that you get to experience the most beautiful things in life. I learned that when things don't come in the package we expect that they just might be a better gift than we would have given ourselves.

We also had a TV backyard makeover done by HGTV's show "The Outdoor Room with Jamie Durie".  We were chosen for the show and shooting began on December 6th...that's right. TWO DAYS after discovering that my baby has Down syndroome.  So, if you see our show (which has not yet aired) and you see me teary eyed about the fact that they are giving us french doors...rest assured...it has nothing to do with the french doors.  But it was a nice thing.  We have a great backyard now.  We have grievances...especially Charles...because it is television and what's important to them is...television. What's not necessarily important is how the yard functions for our family.  Even still- I love it.  I spend more time out there, and my children adore it.  Christian spends hours watering the plants (which is a very good thing, considering the show just covered right over our existing irrigation system and gave us nothing in place of it.) And Elijah seems to literally commune with nature.  When I bring him outside and put him into his little sun tent, he stares and takes in all of the sights and smells and feels of the fresh air.  I learned from all of this, that the little things are so worth enjoying. A friendly and beautiful backyard can give you just a small breath of fresh air...and fresh perspective. 

Sadly, we also had to say goodbye to our golden retriever, Buddy, in early April due to cancer.  He was my first "baby", having raised him since he was just a few weeks old.  He was my rock.  When life was tough I could snuggle into his fur and give a giant hug...although, it was nearly impossible for him to allow that without drenching me in wet kisses.  I miss this dog so much.  Thank you, Bud, for being the best friend and best dog a girl could ever have.  My life was richer and I experienced more love because of you. 

Most of all, this year brought into focus the friends that I have.  That these friends are warm, open minded, kind, loving, loyal and in it for the long haul. Through good and hard this year,  my friends have been there saying, "How can I be there for you?  You let me know."  It was also a year that saw an influx of new friends.  I am so blessed by the people that are currently in my life.  It might have taken me 39 years to find you all, but I found you, and now I am wrapping my arms around you in a big hug and not letting go...

Goodbye thirty-eight and hello thirty-nine.  Whatcha got up your sleeve for me this year?? BRING IT!!

And tonight celebrating with just a few of my cherished friends...

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Friday, August 27, 2010

I am not alone.

I have talked about the feeling of isolation many, many times in my blog. It was the overwhelming feeling I had in the beginning- the feeling that no one else was going through what I was going through...at least no one in a 50 mile radius. First I found Kindred, who was expecting at the same time I was, was having a boy and was even a LOST fan!! :) She is quickly becoming a close friend along with a handful of others I've met as a result of our Friday playgroup at Club 21 (a resource center for families and children with Down syndrome). Well, now, I am beginning to see what a small world this little Down syndrome community really is. It starts back in February, while I was still pregnant with Elijah... I was at a park for a kid's Pirate-themed birthday party with Christian. During the party, we took the kids on a "treasure hunt" all around the park to look for the buried treasure (which was actually buried in the sandbox...super cute). When we got over to the sandbox and the kids were digging up the treasure chest, I noticed a young girl with Ds, playing with her parents. I kind of stalked them for a bit while I tried to get up the courage to talk to them. I finally (trying to be casual) said something like, "How old is she? Does she have Down syndrome?" They answered with her age (5) and confirmed that, yes, she did. I told them that the baby we were expecting has Down syndrome. Suddenly the whole dynamic of the conversation changed. They immediately opened up, were warm and friendly and answered a ton of my questions. The husband even said, "It was great meeting you. You know one day you'll end up at our house for a BBQ- mark my words." I kind of laughed, and he said, "No. Seriously." His wife, Jen, mentioned that she was part of a Mom's group and I should meet everyone. I told her I would love that (in my head I was thinking, There's a whole Moms group of people who know what I'm going through?) We exchanged numbers and have been in touch one or two times, but nothing extensive yet.  Then, I met Sunshine on an online board through Baby Center.com.  When I saw that her profile listed her as living in West Hills, I immediately sent her a message.  We've gotten to meet in person a few times now at Club 21 and one day she mentioned something about a Moms group.  And that I should come.  It just sounded too familiar.  I asked if she knew Jen from the park and she did! It is the same Mom's group.  So, last night was a Mom's group night out at one of the women's houses.  It was in Studio City- just 12 miles from my house!  I came bearing gifts of wine, taquitos, and a little bit of nerves.  I already knew Jen, Sunshine and 2 women from Club 21, but the house was full of women of all shapes, sizes, races, ages, and professions. All different, with one thing in common.  I was kind of heady. It was a great night.  I'm so impressed with these women that I met.  They are an impressive group. I heard stories that were both terrifying and exhilarating.  I saw pictures and got to meet the host's 7 year old boy with Ds (and her two other adorable children too.)  They asked about how I was adjusting and we talked about what "adjusting" really means.  It has little, to nothing, to do with the baby with Down syndrome.  It is adjusting to our own thoughts, perceptions and expectations about what being a parent looks like.  I got to bounce off my new experiences with the Regional Center and the Child Development Specialist with everyone and was met with many nods of understanding...and GREAT advice also!  Now I actually have a plan.  I know what to ask for and how to handle it right now.  That kind of knowledge and confidence to go forth with is invaluable.  It was amazing.  And ultimately, there was wine and food and girl talk, and it was so, so good. 

I'm not alone. I'm far from it. Even though Down syndrome is a dying diagnosis due to prenatal testing, there are many of us that decided to "go with it" no matter what "it" meant...and it's turning out that "it" is pretty darn special...

Monday, August 23, 2010

Quite frankly, a little pissed.

Perhaps if you've come here for sunny optimism, you should be warned and turn back now.  It somehow turned into one frustrating day with my emotions running high.  For starters, I'm probably over-tired and  over-worked, so I'm sure that helps nothing.  I ate three mini cupcakes (carrot, coconut and some insanely delish flavor I can't even place.) But, I still feel no bueno. Not good. Irritated.  Maybe that's because I'm not really a sweets person.  Perhaps I should have gone for the chips...

Today was supposed to be what I thought was our first Occupational Therapy appointment for Elijah.  The best explanation is probably summed up by saying, I am confused.  Nothing makes sense.  There is no communication and trying to get a handle on it all seems to be above my skill set, at this moment.  The...therapist...person...Susan...showed up today.  A friendly, open woman came in and started by saying, "Well, I know nothing about Elijah, so why don't you fill me in a little." ??  It struck me as a little odd...what exactly does she mean she doesn't know anything about Elijah.  Does she not know he has Down syndrome or does she not know what his favorite color is?  What exactly is she looking for here? So, I start by saying, "Well, Elijah has Down syndrome." She nods and doesn't seem surprised by this information. "He doesn't have any major defects, no heart issues and seems to be in good health.  He's nursing and sleeping well.  My biggest concerns are helping him to hold his head, neck and back up straighter and I am concerned there could be an eyesight issue of some sort, although I can't be sure if it is just a form of a developmental delay, because the vision issues I've noticed do seem to be improving."  What I learned from Susan is that she is not an Occupational therapist and certainly not a Physical Therapist (she held Elijah like she's never worked with a baby before.  He was so slumped forward, I thought he might just take a nose dive into his own lap...poor guy...) When I asked what her actual title is, she said "Child Development Specialist".  So, I asked the next most logical question: What the hell is that??!!   Alright, alright, I didn't actually say it like that out loud, but if my inner voice had a mouth that's what it would have said.  She then told me a handful of times how she's never worked with a baby as young as Elijah.  ??? I asked when she typically does work with babies and she tried to say 5 and a half months, but I could tell by her explanation that she was probably rounding down. I also asked if she'd ever worked with any babies with Down syndrome.  She said she's worked with 3 kids with "Downs" (never heard anyone in the professional arena of Special Needs use that term, but I'm new...), but it sounded like they were about 2 years of age when she worked with each of them.  During the conversation she mentioned being in the business for 13 years, so I did my own math. 3 kids in 13 years does not seem like much to me.  If I had designed 3 weddings in 13 years, I'm pretty sure most people wouldn't take a chance on me to be their wedding designer.  The meeting was a bit of a blur, she didn't do anything with Elijah, but to be fair, I won't judge that since I'm sure there are things to discuss first.  By the time she left, I was feeling pretty pissed.  She said that she is not generally brought in in place of an OT (occupational therapist) or PT (physical therapist), but in addition to them...Great! That would be great....except this was the only person that the Regional Center contact ever mentioned that I would meet.  I assumed it was an OT, because in Eli's original evaluation, the social worker mentioned that he was going to recommend OT once a week.  We were supposed to get the "paperwork" 30 days after that evaluation, but it has been 45 days and nothing. I tried calling the Regional Center social worker to say, Hey I think you might have referred us to the wrong person, but I was greeted by his voice mail:  "It is August 20th and I will be out of the office until August 31st.  Please leave a message and I will get back to you as soon as possible." Hm-m mm. I left a message. Cruella DeVille style.  Here's my thing: My child is doing well "for having Down syndrome". He is by no means setting records in the typically developing world.  He has some delays.  And I am not going to let this system wait until he is so far behind that they have to agree to give him services that can help.  I do believe sometimes more is just more and it's not always helpful.  But, I'm not asking for the world here.  I'm asking for A professional to help me work with my son in ways that are going to help him achieve his potential.  So...Susan returns next Monday and she better bring it (to coin a phrase), or we will be dumping her and going to an OT or PT of our own choosing and billing our insurance for it (that is what the Regional Center will do anyway. So why should we take their (Excuse me) bullshit person when we can get a service that might actually help us to help Elijah?  Maybe I'll take it all back next week.  I hope I do.

And onto my next grievance.  My birthday is coming up.  I like celebrating, am not incredibly bothered by another passing year, but there is a haunting memory that I can never seem to lose.  It was the year I turned 21, (yes that was 1922 for those of you doing the math...) and I planned to have some friends over for a party out at my parents house. Basically, 3 people showed up- my two best friends at the time and my now Ex, who was deathly ill and spent the whole time in an upstairs bedroom anyway.  Joyous occasion it was. It made me re-evaluate who I considered friends.  I don't recall all of the details, but I know how it made me feel and it took a long time to shake.  Well, I guess it's still a bit of a fear- to think you have rock solid friendships and then they flake on you and the true colors of the friendship aren't so pretty.  For years, I've said that if I do anything for my birthday, it's only because I want to and if anyone shows up, that is just a bonus.  This year, I have yet to make more than a half hearted effort to round people up, but I did send a cursory text today. Somehow in the course of texting (which is a truly ridiculous form of communication, I know) I managed to get snubbed a few times.  Some from no response and some from, "Oooh, sorry, I have to wash my hair that day."  There was no ill intent and I know that a number of the responses are delayed because of trips and work, etc. I think I'm just feeling a little vulnerable about the old birthday ghosts, and a little irritated that it requires SO much effort to get a few people I love together.  I spend my days planning events and I get a little burnt out when it comes to something for me.  Hey- let me make a huge effort to round you up to celebrate ME. yuck.

I needed to write today.  I needed to use this crazy online, universe baring, blogging-journal thing to do what I need it to do: be an outlet.  I needed to get out the frustration, a few tears (and...cue...) and say that today I feel just a little defeated in the process of life.  Today was weirdly emotional and it's not really all that surprising.  I had an overly full work weekend, which meshed right into my regular week- including work and family scheduling.  I am tired. And I ate 3 cupcakes (and a salad), instead of a well balanced meal. It is just like when I watch my children melt down, and I go through the mental list:
Hungry?
Tired?
Uncomfortable? 

Check.
Check.
Double check.

Perhaps this picture of Christian that I didn't even know was on my camera, taken by Charles at some point I'm unaware of, explains how I'm feeling best:


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Sunday, August 15, 2010

Days of Elijah

Today was pretty mind blowing...I'm trying to sort out what it all means for me and thought a little blogging might shed some light. 

I have been looking for a new church home for some time now.  I had a church that I loved with a group of friends that I had a great sense of accountability and fellowship with, but slowly each one started down new paths, which moved them due to jobs and location and brought them to new churches.  After they were gone I felt really lonely..  I felt lonely because it is a church of about 4000.  And when you don't know anyone in a group of people that large, it's actually even lonelier than being alone (when, actually, I don't usually feel lonely when I'm alone anymore...it's a welcome change.)  So, I've been trying some new churches.  Today I decided to try out one that happens to be 5 minutes from where I live.  When I pulled up, it reminded me of some of the classic church buildings you see on the east coast- except sadly in need of a face lift.  It just seemed old and dusty and in need of lots of TLC.  There didn't seem to be a whole lot of people congregating for church, but I made my way to the entrance with Elijah tucked away, sleeping softly, in the Ergo carrier and Christian holding my hand.  As I walked through the entrance, the very first person I saw was a young boy with Down syndrome sitting in a chair at the entrance, helping the greeter.  I tried to keep my focus on the greeter, who wanted to hand me a packet about the church and explain everything in it...all I wanted to do was say hello to this boy.  The man introduced me to him, "This is Ezra."  (Although, I could tell by the man's mannerisms that Ezra was not his own.) The boy said, "Hi. Nice to meet you.  Who is that? (pointing to Christian)"  A few friendly people came up and introduced themselves and I kept wondering who his Mother was.  One of the really nice women I was talking to began interacting with Ezra, and I said, "Is that your son?"  She said, "Yes. I have five and Ezra is my youngest."  I patted my little sleeping sack and said, "My little Elijah has an extra chromosome too."  I think the word "awe" sums it up for me. Maybe even for her too.  She said, "He has been such a blessing to us. ...Well, all of my kids have, but in some ways especially Ezra has because of the challenges we've overcome."  That was about all we had time for as we seemed to be shuttling in to the sanctuary for the service.  Just before I entered, a tall man appeared and introduced himself (turns out that he is Ezra's Father).  We found seats, got comfortable with Christian still with us. (The church invites the children to stay with their parents during the music and then they are dismissed to Sunday School.)  A tiny piano in the corner, played by an elderly woman with pure white hair, began tinkling out a tune.  The interior of the church is architecturally a near copy cat of the small church that Charles attended as a child.  Instead of rich, cared for dark woods of his east coast church, this church had pale wood pews and a pale wood altar.  A slightly dusty, silk floral arrangement sat in front of the pulpit.  The mauve carpeting and blinds matched, and a large screen was pulled down over where the stained glass was probably hidden beneath.  Ezra's Father took his place behind the pulpit...it took me awhile to figure out that he was indeed, the church's pastor!!  The first song began, and despite the fact that the words were projected in a dim, nearly invisible fashion on the screen, and the piano tinkling was a less than desirable accompaniment to the size of the room, it was one of my favorite contemporary Christian songs.  My eyes started welling up a bit...God, what are you trying to tell me here?  The second song took my breath away just a little more.  It's another contemporary song that I've always loved, but never had the meaning it does now.  It is called, "Days of Elijah".  This might have been when I managed to just barely keep myself from going into the ugly cry. (You know the one I mean...)  The whole time Christian danced in the pews, oblivious to the tears streaming down my face.  When the children were excused to the Sunday school, I went with him to help him get situated.  The pastor followed me out and said, "Jennifer- just wanted to let you know that there is a Cry Room if you need it at the front corner of the sanctuary."  It took me a minute to realize he meant a Cry Room- in case the BABY started crying! (And not me!) 

Christian joined the other three kids at church in Room 7 for their church school time.  Ezra was there, who had recently turned 9, then there were sisters, Lorelei and Lizzie, who looked about 6 and 7 years old.  The teacher started talking about all they were going to do today, and I thought, Oh boy!  There's no way that Christian is going to sit patiently through all of that! But, I gave him a kiss and said, "I'll see you in a little bit sweetie," and turned to go.  He lost it.  He started crying, "Mommy no!!  Don't go!!  I want my Mommy!"  Ugh. Heartstrings.  I stopped, gave him a big hug, walked him back to the circle and said, "I'll be right back sweetie.  You'll have a great time! Bye Bye!"  He waved, and I headed out as his lip looked on the verge of quivering again.  Deep breath.  Gonna. have. to. get. used. to. this.  

The rest of the service was a bit of a blur for me.  My mind raced through the fact that I could walk into a church in my own neighborhood and the very first person I see shares something in common with my youngest son.  What is their story?  How did they find out? How has the journey been for them?  I had to remind myself to focus on what the pastor was saying.  The services came to a close and I quickly went to get Christian.  He was thrilled to see me, and certainly wasn't scarred from the experience.  The teacher talked about how they read bible verses and talked about a story and sang some songs, and I thought....Mmmm mmmm....He's three.  The song part might have been the only thing he could sort of participate in, but he seemed happy enough.  And he'd certainly seemed to form a little bond with Ezra, who was perfectly willing to match Christian's three year old, playful sensibilities.  As we headed to the car, Ezra's Mom stopped me and gave me her number.  I asked how Ezra's health was, and she told me he had open heart surgery when he was between 3 and 4 months old. Exactly Elijah's age now.  Then she introduced me to one of the other white haired ladies, by saying that she had 2 children with Down syndrome that are in heaven now.  Neither baby had lived longer than 6 months.  She had 3 children.  The first had Down syndrome and died as a baby, the second was typically developing and is 48 now, and the third, shockingly enough was another baby with Down syndrome, who also died before 6 months of age.  She reiterated what I already knew...it is EXTREMELY rare to have more than one child with Down syndrome.  All I could think as I drove away was how lucky we are that Elijah is so healthy and has no heart defects!  So lucky.  SO blessed. 

Even though I didn't feel a strong connection to this church, it certainly gave me much to think about.  It reminded me of the beauty of a small, simple church gathering together each week and lifting each other up in any way they can.  It refreshed me in many ways.  I left humming the chorus to "Days of Elijah": 
Behold he comes, riding on a cloud
Shining like the sun, at the trumpet's call
So lift your voice, it's the year of jubilee
Out of Zion's Hill salvation comes...

I just love this tune.  So, I sung it a few times on the way home and I could hear Christian in the back seat trying to imitate my words.  So, I started trying to teach him, by letting him fill in the last word of each sentence.  I sang, "Behold he comes, riding on a __________..."
"Sun?"
"No, sweetie...Cloud." 
"Shining like the _____..."
"Sun?"
"Right!"  "At the trumpet's ____"
"Call!" 
We continued on... I said, "Let's sing it again now that you know it." (He had been getting the words right for about three choruses now.)  So, I started:
"Behold he comes! Riding on the __________..."
"Bus???"
...............................??!!  Hil.a.ri.ous.!!!!   We started laughing and couldn't stop.  I'm certain Christian didn't even know exactly what was so funny, but the laughter was contagious!  I said, "Well, sweetie, I guess in this day and age, it's quite possible that HE would ride in on a bus...it's a bit of a step down from a cloud, I suppose, but it would work!  

And so, this dusty little church that I sat in, with it's kind, lovely people, might have been just a little bit like Jesus riding in on the bus.  It's not glamorous, but it's real.

Saturday, August 14, 2010

The Stares...

I played a little "hooky" yesterday. Although, it wasn't your typical "hooky", because it's a fun thing I usually do.  I skipped a playgroup yesterday because between drive time and play time it seemed like a lot of time that would just leave me more stressed about the work I have to do for an upcoming event.  So, I skipped it.  I stayed in town, but as a compromise, decided to do one fun thing for me and Elijah (well...really just me...) and then I'd get back to work and start to catch up.  So, with Elijah happily asleep in my Ergo carrier, I headed to Borders for some book browsing and a coffee.  This just so happens to be one of the top ten things I like to do when spending quality "me" time.  I walked up to the bookstore and noticed by the group of people sitting around the entrance to the store, that it was 3 minutes prior to opening.  I stood there, swaying back and forth, even though Elijah was already asleep...it is that habit of all new Moms.  The best is when you're talking to someone who doesn't have a baby and they start swaying in time with you anyway...  I looked around and noticed that about 3 of the people waiting, were in wheelchairs.  Then, the young adults in wheelchairs all started congregating with their caregivers and with some man who seemed in charge of it all.  He asked everyone to get together to take a picture and once they were together, commented, "Well, this is the smallest group of people we've had, but it's a good group!!"  The caregivers agreed wholeheartedly (seemingly more to the "smallest group" part, though.)  I felt flushed.  I don't know why.  But, I have an actual physical response these days to anything Special Needs related.  I noticed the book store patrons all staring as the young adults took their places in the picture.  I tried to think that anyone would stare at a group gathering for a picture, but realized that usually in that case, the stares would also be peppered with smiles. No one was smiling. I overheard one of the caregivers say to the coordinator guy, "You should be in the picture!"  He said, "Yeah, I should.  Next time I will!"  So, I said, "Would you like me to take a picture of you all?"  He seemed surprised and touched that I asked, when it seemed like such a simple thing...although that is LA for you, much of the time...everyone so involved in their own thing...  While I asked everyone to say "Cheese" I heard someone say, "Aww...Look at the baby!"  I handed the camera back and said "You're Welcome" to his "Thank you."  But, I really wanted to shout...I understand...even if just a little...  My Baby has special needs too...  And at the same time I found myself being glad that our Special Need is Down syndrome. Is that bad? Glad that wheelchairs don't usually become necessary. Glad that they are stereotyped as happy, joyful people (even though, like everyone, some are happy, some are not...) Sad that like these young adults, my baby will be stared at. And already has been. 

I recently started taking Christian to a music class.  It is both a frustrating experience and a joyful one for me.  Christian has a new thing- that when he's around other kids he doesn't know, he goes nearly mute.  He acts almost shy and does weird things like sticking his tongue out.  Then there is the typical 3 year old boy reaction of running around the room and needing to be told 2 or more times to come sit down. Argh!  We've only been going for about 3 weeks now, but each time I have Elijah with me.  I think the teacher knows about his diagnosis because of the sensitivity with which she asks questions (That, and my best friend works for the music company, so I'm pretty sure she's shared the info.) However, this week, I was getting a lot of very curious stares from one of the other kid's Mom. When I put Elijah on his tummy to help him push up on his arms, she stared.  When I sat him up and supported his upper back so he could work on steadying his head, she stared.  When I lifted him to my shoulder and he relaxed into me, she stared.  It wasn't an Aww-how-cute-Look-at-the-baby stare.  It was a curious-somethings-not-right stare. It was a Does-she-know-something-might-be-wrong? stare.  I sort of wanted to explain, but didn't.  Hey! I know.  My baby has Down syndrome and it's gonna take him longer to do things.  So you can stop staring now, lady.  It's all good, it's just that it's really the first time I've had "the stare".  I've talked about this with some other Moms who have kids with Special Needs, and it is always just a little strange.  I have a girlfriend, who unfortunately I haven't seen much in recent years, who is a bit of a celebrity.  During her heyday, I asked her if it bothered her to be stared at all of the time?  She said, "You know, it's not much different than when people stare at you just a little more and a little longer because you're pretty."  Now, once upon a time, I did have my fair share of stares for that reason, and sometimes it sucked, but mostly it was fine.  I thought, Yeah, that's not so bad.  People stare. So what?  My little Elijah is just like that super pretty girl, or that celebrity: He gets more attention.  I personally think he should, he's special. There's a lot to look at: like how hard he tries, how big he smiles, and how much he loves us.  Those things can be seen already.

And let's face it...I stare all day long at this precious baby....

We are just a few weeks away from Christian starting preschool.  Many of our friends started their same-age kids last year, so they've been through the first-day-of-preschool jitters. Now it's my turn.  I'm alternately excited, nervous and sad.  My firstborn is growing up!  He is officially a "Big Boy".  I think he's gonna rock it that first day of preschool, but I'm not so sure how I'll do...crying in my coffee, anyone? I hope he doesn't do that stick-out-his-tongue-silly thing he does.  I hope he listens to his teachers. I hope he plays nicely with the other kids.  I hope he thrives. I hope he loves it.  I even hope he misses me...sort of.  But, I have no control over how he'll be.  So, far I've been the main source of his comfort, his schedule, his life.  It's a little scary but also a little freeing to give some of that up.  He can do a lot by himself now.  He likes to tell me that too. (I do by myself, Mommy.) He uses the toilet instead of a diaper. He sleeps in a bed instead of a crib. No more binky. He does still like his blankie and this little stuffed animal named Leo, who he is absolutely captivated by- God only knows why!  So, I reminisced a lot this week.  I had to get a new cell phone, and the only fear I had of getting rid of my old phone was that it contained all of the videos I have of Christian's "firsts".  His first head up, his first crawl, his first walk, his first dance, him kissing our golden retriever Buddy...(Oh! My heart...Miss you, Bud.)  Since I had been having trouble saving the videos from my phone (all other info synced just fine, but never the videos) I was worried I'd lose them all.  The cell phone rep recommended a mini disc designed specifically for saving pictures and videos.  They saved the info onto the disc, trashed my old phone, gave me the new one, and I held my breath...I had a brief moment of technical uncertainty yesterday and thought I'd lost them all.  Amidst my sobs, I tried again and found everything neatly saved, just as I'd hoped!!  When I watched all of the videos again, I was struck by the fact that Elijah looks a little bit like Christian did as a baby!  Friends have said that, but I didn't really see it.  Here is the first video clip I ever took of Christian as a baby:

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The cool thing, is that the age Christian is here is EXACTLY the age that Elijah is now.  There are definite differences.  Christian is much stronger and in control of his head and babbles more as I speak, but it is a joy to see that some of it is very much the same...like how they smile when prompted by my "special Mommy voice" (insert embarrassment here).  I think I'm going to work on a little "Elijah's firsts" video too, so stay tuned...

Elijah definitely has his own talents.  And flexibility is one of them!  Wow.  I jokingly was referring to him as my little "Rockette"- he can stretch that leg all the way to his face.  I know babies are usually flexible, but this guy has em beat!  Case in point:

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Got my leg Mommy!

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One legged Happy Baby Pose!

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Hi sweetness...

Sunday, August 8, 2010

Grace is dancing

One of the biggest fears that I had when I received the diagnosis that our baby has Down syndrome, was that he wouldn't have a good quality of life.  I worried about his heart, because 50% of babies born with Down syndrome have heart defects.  I worried about his digestion, his growth, his physical capabilities...because all of these things can be affected.  And because we don't know what he's truly capable of yet, we marvel at each and every accomplishment.  The feeling of tears still spring up at the back of my eyes when Elijah breaks out into that smile-that-lights-up-his-face.  And we hear a little laugh now and again, and the tears threaten my eyes there too...his little laugh that's preceded by a simple "Heh".  Now, we're getting to some of our bigger milestones, not completely there yet, mind you...but getting there.  The first being that he is starting to lift his head and support himself on his arms. 

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It is heaven to see him responding with a little smile, like he loves the encouragement and is just a little proud of himself too.  Throughout my pregnancy and now that we get to experience him everyday, I can tell that his spirit is strong.  He's a little fighter.  He's gonna fight for it, and that teaches me everyday to not overlook the little things that make up the big picture.  We can choose to spend our days worrying and stressing about our careers, our homes, our relationships or we can choose to just put one foot in front of the other and do the work.  I'm tired of negativity.  It's not that I don't go there occasionally, because I do. But, I'm tired of it.  Because it does NOTHING except rob you of potentially beautiful experiences and reminders that life is short, sweet, and precious.  We take it for granted most of the time.  I went to a 2 year old's birthday party today with both of the boys.  We had a great time, hung out with some cool people and had a few more out-in-the-world experiences.  A friend I saw at the party, turned me onto this singer named Tyrone Wells.  He told me that Tyrone Wells had written a song about a little girl born extremely premature and with Down syndrome, who had the worst possible prognosis.  The doctors believed she would never walk, talk or play.  Her parents named her Grace with hopes that she would survive.  Survive and one day dance.  Two years later when Tyrone Wells contacted the family, they said, "Grace is dancing."  He named his song, "Grace is Dancing" and although I couldn't find it to upload to my music player, I did find a You Tube clip.  The song is phenomenal, but what you'll see in this clip is even better than that...so, grab your tissues...(You will want to pause the music player found at the very bottom of my blog, so you don't have overlapping sound.)



One day, I will say the same of my little Elijah.  I full intend to teach Elijah to dance...to REALLY dance.  He may not love it, or even like it and that would be okay.  But if there is any spark, any little inkling of interest, then I will teach him everything I know.  Whoever said you had to only teach a girl about the love of dance? With that said, I am attempting to put Christian in a boys hip hop class in September.  It could be a complete failure, with the teacher shooting me darts through her eyes at enrolling him, or it could be the cutest thing in the world.  I'm gonna put him in some low rider jeans with his "Cars" underwear sticking out and a backwards hat...just to see... :)

It was a good, good weekend.  Got a little girl time for myself (complete with lunches, yoga, massages, brunch and cocktails- Happy Birthday Kristi and KB!) and got some cherished quality time with my boys.  Here is one of my favorite moments:

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Elijah busts out the big-gun smiles, as Christian peeks through the hole and declares, "TA-DA!!!!!"

Friday, August 6, 2010

Oh, my little men

Today we sang Old MacDonald in the car.  Elijah was quickly lulled to sleep by our super long song, but Christian was game.  In it, I would leave the "and on that farm he had a...?" open for Christian to fill in the blank.  Then I'd ask, "And what does (that animal) say?" He would proudly tell me and then we'd continue on singing.  We did a ton of animals, each time with me being amazed that he was thinking up so many.  Well, he finally got stuck.  Not sure what animal to say.  So, I suggested, "How about a cat?  Do you think Old MacDonald might have a cat?"  And a huge grin broke out on his face.  "Yeah! A Cat!"  "And what does a cat say?"  He paused as he thought, then said, "(Insert cat hissing sound here)".  I nearly had to pull over I was laughing so hard, and I said, "Yeah sweetie, that IS what a cat says...to you anyway!"  Christian has a close friend who we play with often, and everytime we're at her house, he tromps off in search of their cat...who absolutely despises him.  It's of no matter to Christian.  It is just as entertaining the 50th time, as it was the first time to chase that cat around, while it hides under and on top of furniture, crouched, yet arched and hissing.  You can be sure that if Christian is out of sight for 2 minutes while we're at Caitlyn's house, he is chasing that cat.  And then there is the matter of the backyard cats and bunnies. Somehow, we have ended up (in the concrete jungle in which we live) with 2 bunnies (!!) and 2 cats who come to visit our back yard.  One bunny is white...well, it may have been white at one time...now it is dingy.  The other bunny is an orangish brown.  They are really, really cute.  Each day now, Christian wants to go outside to see the bunnies (The cats are too quick and too smart to hang around long enough to see what shenanigans Christian will be up to.)  He searches around for them and I can always tell by the screech of laughter, that he has found a bunny...and is probably making up some new way of chasing or taunting the bunny.  Sigh. He's relentless.  But it is really, really, really cute.  Plus, it makes for an entertaining day for me while he hops around the house saying, "I'm a bunny." 

We've had a fun couple of days with Elijah too.  He has finally started trying to prop himself up on his elbows and lift his head!  He doesn't have the stamina to hold it for very long, but for short periods he looks like a typical 3 month old.  The rest of the time he looks like a drunken sailor...  :)  ...he'll get there!  I couldn't be prouder, and I've had fun showing off his new "trick".  We went to the Club 21 playgroup again today and it was fun to share his progress with the Moms.  I also got to meet "Sunshine" in real life (I mentioned in my last post about meeting other Moms online), and her adorable 16 month old daughter.  It's both encouraging, but also daunting when I hear about all of the helpful therapies out there, the types of progress our kids will make, etc.  Most of the time all I can think is, How will I fit any thing else into this crazy life we have carved out?  The majority of people I have met with children aged one or more with Down syndrome, have various therapies totaling about 6 hours a week.  SIX hours.  Oh boy.  This is where I live in happy denial and glow in the fact that Elijah has figured out how to start lifting his chest.  That's all I need to do for today.  Maybe it will be like babyhood progressing to childhood:  When Christian was a month old, my sister's youngest son, Davin, was 6 months older, and I remember thinking, "Whoa.  7 months old is a handful.  How am I going to handle that?"  And my Mom said, "Well, that's the beauty of why they start out small and get bigger.  You get used to dealing with more without realizing it."  True words.

Now for a little confession...I have a repeat event client that I'm working with.  Interestingly enough, when I planned and designed her older child's mitzvah 3 years ago, I had just had Christian when I went back to work and helped turn out a great event for her.  Now, her younger child is being mitzvahed and I am back in babyland again...  I haven't said anything about Elijah's diagnosis. Today, I even had a meeting with her and she's been dying to see the baby, so I brought him. ...And didn't say anything about his diagnosis.  She and her family ooh'd and aahh'd and I didn't say anything.  For one, because what am I supposed to say?  Glad you think he's cute, but he actually has an extra chromosome?  For another, because I'm trying to remember that he is a baby just like any other and his extra chromosome doesn't change as much as you'd think.  He's more alike than different.  It's weird...I don't know if my client senses something, sees something or doesn't notice anything different at all, but I have this hyper-awareness.  It was nice to just let someone ooh and aah without having to go into the overall picture of how we feel and what we think about Down syndrome. 

I leave you with only this (stolen from a friend's FB status) and a picture of one of the backyard bunnies and cats:
"You never know how strong you are, until being strong is the only choice you have." - Author Unknown.

Monday, August 2, 2010

Searching for sameness

I've never spent more time searching the internet. It's probably equivalent of the time I spent when the internet was kinda new and I was ├╝ber-young and there were "chat rooms". There are still chat rooms, but back then it was hip to be in the chat rooms. AOL charged by the hour and I would get these ridiculous bills because I'd been online averaging 3 hours a night!! :) Clearly, this was before I knew what being busy was. Nowadays, (Ha! Did I just say nowadays?? I think I just aged 20 years and hiked up hill both ways to school...in the snow...)I spend hours searching for people like me online. I have a baby who has Down syndrome. How did I end up with a baby with Down syndrome? I am so very, very lucky because the people I surround myself with are open-minded, honest, comfortable with differences, and seriously the coolest-people-on-the-planet. And yet. They don't know firsthand what it's like to raise a child with Down syndrome. So I peruse the internet. Looking for people like me...only I don't necessarily know if I've found people like me yet, only people who have like circumstances. I'm reading a great parenting book called, "Parenting Without Power Struggles" and in it, the author talks about 6 stages of attachment- 6 ways to create a strong and lasting bond with your children. They are: Proximity (spending time with your child), Sameness (finding commonalities with your child), Loyalty (demonstrating that you 'always have his/her back'), Significance (cherishing the sense of specialness and importance of your child), Love (showing affection for your child), and Being Known (an open and honest communication existing between parent and child). The author describes that all close relationships share these attachments. I feel that this is true and that got me thinking about what I've always looked for in my friends. Right now, because of our circumstances with Eli, some of the "sameness" quality has shifted a bit with my current friends. It hasn't shifted so much that I don't relate to them, or anything crazy like that. It's just that I have this longing to have that sameness with someone who knows. Now that I'm 3 months into this journey I'm starting to figure out how to connect to people who also are on a similar path. Just like any "sameness" quality- it doesn't automatically mean that we'll be lifelong BFFs. Just because I bonded well with other dancers that I worked with along the way, I didn't become life-long friends with them all...only a select few. The coolest thing is that I'm starting to make connections, and friendships are starting to develop and it's really NICE. It's nice to have some people I can go to and say, 'I thought this was great, don't you agree? Or, I thought that was really tough, do you know what I mean? And they DO. I even met someone who knows someone I know, who likes exercise like I do, and who goes by a screen name of Sunshine. How great is that? I don't think it's going to be possible not to like someone named Sunshine! :)

I recently decided to put off my fears of some looming speech catastrophe for Christian, because we were supposed to have our Speech Therapy evaluation on Friday. Turns out there was a huge miscommunication and he can't be evaluated at this time!! I'm so irritated...mostly at myself for not making absolutely sure I was understood. So, now we're back to square one and I have to start all over at finding a good speech therapist who is local and not going to charge us our life savings to have him evaluated. (Who am I kidding? If they charged us our life savings, it might as well be free!!) Sigh. Although, I feel like Christian's speech has been improving and exploding even more in the last week. The only thing that I've noticed consistently is some word retrieval issues. For instance, if I ask him to point to purple, grey, brown, silver, a platypus, a toucan and a zebra, he can do it with 100% accuracy. But, if I point to the toucan and say, "What is that?" He'll pause for a long time and then say, "I don't know. What is it?" It's not with everything and it's not all of the time. The rest of his speech seems pretty intelligible, though he does exchange some sounds for others. He can create the sound if I work with him, but then goes back to his habitual way of saying it. Bottom line: I'm getting less and less concerned and if I don't find a reasonable speech therapist to assess him now, I'm not gonna stress. I'll wait until he's in school, around his peers, learning more each day and see what happens. I have to remember that he is only three.

As always, Elijah is GREAT! He's not as strong or as skilled as most babies his age, but he IS just as sweet and adorable and cuddly. Charles happily takes him at night, lays him on his chest and they both crash out- Charles snoring loudly and Elijah blissfully unaware of the train-loud snoring. If only I was so blissfully unaware...(Sorry, honey. Nothing against you. It's the snoring that I'd take out if I could.) :) Today has been a really good Mommy and Elijah day. He was doing so well on his tummy today. If I assisted him in keeping his arms propped under his chest, he was holding his head nice and high and checking everything out. Then later, while Christian was coloring and showing us each. and. every. single. color. he. was. using, I was getting the biggest smiles out of Eli. I could cry because baby's smiles are just so JOYFUL, aren't they?!! It's actually hard to stay unbalanced about life when I'm smiling and cuddling with either of my boys. I think that's going to be my secret weapon. Speech therapy appointment gets cancelled? Scoop up my 3 year old and give him the biggest of big bear hugs. Worried about the future that Down syndrome will play in my baby's future? Scoop up said baby boy, stare deep into his eyes, and forget everything that's not AT ALL important when he gives me that one-eye cocked grin that stretches from ear to ear...




Sunday, August 1, 2010

The gap widens


















The end of this week was the end of an era, really. Even though I was only a part of this era for the last 2 years, 6 young dancers from the studio I teach at, graduated and said goodbye to their teachers, their younger dance friends and years and years of sweat and hard work. These 6 dancers inspired me when I first came to this dance studio. They inspired me to be a better teacher and they inspired me to try as best I could to pass on what I love most about ballet. What some see as a boring art form, I see as grace, beauty, story telling and enviable athleticism. I hoped that I could teach them the value and beauty in ballet, and I am most proud to say that I seem to have done that for them. We celebrated the end of the dance year with shared memories, laughter, some tears (mostly my own- thank you baby hormones), a really tasty Dulce De Leche cake that I bought for the girls and a recital.




















It is such a gift to get to be a part of a young dancers life and have influence in a positive way. I didn't have any girls of my own, so it seems so appropriate that instead, I have a studio full of girls with whom I can choose tutus for (thank you yearly recital costumes!), talk about dance with, get my fill of giggles...and tears with, and pass down little moments of wisdom to (you know- those girly things that you wish someone else would have told you before you made the mistake on your own.) It was a very full week. And I mean full in the emotional sense. I also brought my littlest one, Elijah to the dance studio this week. It was a babysitting snafu, but ultimately it ended up being pretty fun. The ballet girls loved seeing Eli and had a line going of who could hold him next. Young girls are so scarily observant too. One young girl said, "One of his eyes is bigger than the other one." I had been questioning this myself for the past week or so, wondering if what I saw was true or if it was just because he has a clogged tear duct still in his right eye, and thus isn't opening it as much? I also had questions like, "Does he still have Down syndrome?" :) There is no judgment, no bias or prejudice in their questions and observations- they are all just observing and curious and sweet. (This was with my group of 7-10 year olds.)



















I'm starting to see the gap widening between Elijah and other typically developing babies his age. I have a number of friends and acquaintances who have had a baby within a couple of weeks of Elijah. I recently saw a picture of an acquaintance's cutie, just one week older, sitting up in a Bumbo seat with a giant grin on his face. It was adorable and yet I was immediately hit with...Wow. Elijah is nowhere near doing that yet. Then yesterday at the recital, I saw the sister and niece of one of my dancers. The baby is 4 weeks old and I thought, Wow. Elijah has just stopped looking like that. And I had a twinge. A twinge because when I looked at this super-young, first-time Mother, I slightly... just slightly, envied her innocence. Her world hasn't been rocked the same way mine has. I rarely think like that and it struck me when the thought passed. Even though she hasn't yet lived through the same kinds of worries I have (in her 20 years of life), I still hold true to being a better Mother and being better prepared to handle what life throws me now (in my advanced maternal age)...way, way, way more than when I was 20 years old. I remind myself constantly not to compare, but it is impossible not to notice..thus, compare, other babies to Elijah. One of the new friends I've made through the Ds support/play group I attend, shared with me that she thought the comparing was the hard part. She said that she'd had a friend whose baby was 6 months younger and they would lay them on a blanket next to each other and remark how alike they were, and then even that baby 6 months younger began to surpass her daughter's milestones. It's easy to say it won't affect you, but every once in awhile it really does. It's mostly an adjustment. What is true is that our babies grow up fast. Everyone told me that when Christian was born and I didn't know how true it was until I blinked my eyes one day and he was three and sassing me back, telling me that he didn't break the chair, his stuffed animals did it. "The animals did it, Mommy. The animals did it." They grow up fast, and then they graduate from a dance studio where they've danced most of their life. So...I'm looking at it like this: Maybe I just get to enjoy my baby a teeny tiny bit longer than most people do...

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