It's a Process

I've got a lot on my mind. So much, in fact, that I haven't known where to begin - in writing or even with friends. It has certainly been a "season" for me.  Less than  3 months ago, we lost our friend Steve, randomly and suddenly. In early May, my friend Trycia lost her 6 year battle with cancer. Then, less than 2 weeks ago, a young boy- only 12 years old- who I looked up to as an ambassador with Down syndrome, died in his sleep. Wedged between his two loving parents. Not even 24 hours after a seemingly clean bill of health from his cardiologist. This boy was so smart, so full of life, so much of what every parent hopes for in having a child. Yes- he had that pesky extra chromosome, which does in many cases, carry with it extra risk factors. For Timmy, the extra risk factors came with some heart problems.  I cried so hard upon hearing the news. I cried and then called Sarah, who has become a close friend- originally we met because our youngest sons both have Down syndrome- but we bonded more over a wide variety of common interests. Sarah hadn't heard the news yet, and so we cried together. It has been a season.  What came to me recently though, is just how blessed I was to know these people. Two were friends, one was a shining example of how much "life" my youngest son still has to live. My heart has been heavy and yet, daily, I am struck by this overwhelming sense that everything will be alright.

This weekend, I had to travel to Las Vegas- for work and for pleasure, as I was hired to coordinate a friend's wedding.  The "work" part had it's challenges, but the pleasure part was oh so sweet, as I brought my little family with me. It was such a pleasure to see a close friend get married and have this beautiful, supportive energy of love surrounding her and her new husband. We drove to Vegas, accompanied by the shouts of "Road Trip, Baby!!" from Christian, who has no idea that those words may be a sentence he shouts for years, and years to come. It was part work, part relaxation and part renewal.  Now is the time for me to embrace the next season and I'm ....trying. The next season is summer, and I can't imagine anything more healing than days of sunshine, watermelon, playing with the boys in the water, lots of yoga (thanks to a slightly reduced work schedule) and many memories in the making.

I still have no idea where Christian will go to Kindergarten next school year (although, I went ahead and bought all of the appropriate 'dress code' clothes for my favorite school for Christian...you know: "Just in case".) These days, the season needs to be of my choosing: I choose each day to remain positive about the school situation. I choose to look forward to the next season of summer instead of remaining too long in  the sadness of a season where I lost people I love and look up to.  I choose a new day..each day. And sometimes I fail. I've learned that "failing" is sometimes okay. Failing is sometimes even necessary. The important thing is getting back up and choosing something positive again the next day. It's a process.


For now, that's all I've got.  It's a process. And that is. okay.

Love Big, Risk Much

While driving home from running a few errands this morning, I had a sense of "Everything is going to be okay" wash over me. I immediately burst into tears. I don't know everything is going to be okay, just like I don't know that everything is not going to be okay.  We know nothing. Not from one minute to the next.  This can be an exhilarating thought or an overwhelming one.  Right now, it's overwhelming to me. I've lost two friends in the last 2 months- one very suddenly and one whom I should have known would leave us early.  On Sunday, I spent the day with my friend Trycia's family and friends at her parents house, celebrating her life and all that she meant to us.  There were some tears, but mostly there was laughter. SO much laughter. It was amazing, and when I thanked her Mom for having us, she said, "Oh absolutely! Trycia ordered this." She's right- Trycia would have loved this. In some small way, we all felt that Trycia was right there with us, laughing along and enjoying so many of the people that she loves.  I took a few photos to remember the day, and when I got home I uploaded them and began looking through.  Something weird happened: As I began to look at the two group shots we took together, I noticed a "blur" of light along the right side of the photo.  At first, I thought it might have been a smudge on my lens, but as I clicked to the next picture...no blur. Then 6 photos later, in a picture of me and my friend Jen, there it was again. Two pictures in a row, shot at different distances. I got goosebumps. I want you to look at these photos...what are your thoughts? It might very well be that I am just trying to make sense of my friend being gone...my wanting to feel that she is still "here" in some way...
And yet, it's kind of unexplainable...It's kind of hard to deny that she was really there.






Before I left yesterday, I gave a card to Trycia's Mom that contained a brief note and the $650 (!!!) we raised as a small cushion to help Trycia's family with whatever financial burdens they may be dealing with now. It isn't an amount of money that changes the world, but it was heartwarming to see people- strangers, acquaintances and close friends alike, give a little to a family who has lost a lot. Thank you. Sincerely, from the bottom of my heart, thank you to all who donated:
Deena
Carrie
Hailey
Laura
Lisa
Heather
Jennifer
Brigid
Sarah
Erin
Shoshana
Linda
Keith
Angela
Karen
Jocelyn
Bev
Kristi
Kathy
Jaimee

Thank you.

I spoke to Trycia's Dad before I left. He told me: "Hug your boys tight. Trycia was always a joy to me. I couldn't take my eyes off of her when she danced." I know what he means. I have hugged my boys just a little tighter lately, and although I have been preoccupied with the loss of my friend, I think now is the time for me to share a taste of the happiness that was my boys' Birthday Party. They turned 2 and 5, and I created a fun "Under The Sea" party to help ring in a new year for each of them...






















It was genuinely such a wonderful day and wonderful party.  To see my boys' faces light up over every detail- the cake, the favors, the slip n' slide...Christian actually said to me the day before his party, "I really love you, Mom.  Thank you for doing all of this." My heart melted.

In the process of trying to deal with the loss of my friend, another friend of ours expressed fear over getting married or having kids...because things like what happened to Trycia, happen to people all of the time.  She's right: Choosing to love big, means risking much. But when I think about all I would have missed out on if I would have played it safe, I would have missed TOO much. I would have missed all of the years of laughter, love and respect for and from my friend Trycia. I would have missed the miraculous experience that is that of getting married...and then later getting pregnant, giving birth and being brought to my knees over the vulnerability you experience as a new Mother. I would have missed the most joyous and elated smile I have ever seen on my son Christian's face when his friends and family sang happy birthday to him at his party a few weeks ago. The amazing, good memories far, FAR outweigh the challenges.   It's harder to trust and remember that life will never give us answers, we'll never know what's around the corner, but in loving big the rewards are plentiful and sweet.

Trycia

I wanted to write a post about the beautiful birthday celebrations that we recently had for my boys, but unfortunately I need to purge first.  My heart is heavy today with the news of a good friend's passing. My sweet friend, Trycia Carlberg, lost her battle with cancer yesterday after a 6 year battle that started as Stage II Breast Cancer that later spread to her bones, becoming Stage IV. Words are so inadequate in trying to describe Trycia's effervescent personality, her contagious smile, her caring heart, her bounty of talent and maybe most importantly, her strength of spirit.  I met Trycia in March of 2000, working on a kids' stage show for Universal Studios, called "The Rugrats Magic Adventure".  We were dancers in the show, playing the part of the main character's (Angelica) favorite doll: a messed up "Barbie", if you will.  There were three of us, playing the identical role, as in the magic show, Angelica made 3 of us appear to help her perform her magic tricks. This show, and meeting the people I worked with was a major turning point in my life.

The year I met Trycia, was probably one of the hardest that I've been through as I was dealing with a failing marriage, that soon after ended in divorce. Trycia was one of the friends that was there for me through all of that. We spent our time as friends cutting to the chase and pondering the "deep stuff". Our combinations of personalities always had us diving into the deeper meanings of life- we just weren't there for small talk. Not only did Trycia and I love our in-depth conversations, but she was quick to laugh and it was infectious. The years that I spent working nearly daily with Trycia, turned out to be some of the happiest of my life. Despite the difficult relationship I was leaving behind, I ended up meeting and falling in love with Charles, who I married 4 years later. Trycia was there for that too. When she was diagnosed with cancer in 2006, I was devastated that something so awful could happen to someone so good, so healthy and so young.

When I think about my life and the course it has taken over the last six years, it really puts into perspective how long Trycia fought cancer.  In that time span, I started a new business, lived abroad, had 2 children and absorbed the news that my youngest has Down syndrome- which because of the life altering effect it had on me, makes the last 2+ years seem even longer. Trycia also experienced a lot in that time: marriage, which unfortunately later dissolved, a trip to Korea for some cutting edge treatments, surgeries, chemo treatments, reconstructive surgery...really more than a person should have to handle.  And yet, she handled it with quiet strength and grace.  I know that she learned a lot about herself and what is truly important in life. Not too long ago, we talked at length about life's unexpected lessons- that despite seemingly challenging and horrible news, there are always silver linings.  This is why Trycia was inspirational.  She made a profound impact on most who knew her.  She made a profound impact on me. Just knowing that her smile is no longer gracing this earth, makes me burst into tears.

Next week, I will join Trycia's family and friends in celebrating and remembering her life. I know that her family has financial burdens as a result of her lengthy battle against cancer, as well as the many expenses that crop up in saying a proper goodbye to someone you love. Outside of the Buddy Walk, which benefits people living with Down syndrome, I don't often do this. I am asking for your love and support, and hopefully a small financial contribution that I can bring with me to Trycia's family next week.  I set a high goal, even though I know that her family would be appreciative of any small amount.  However, I think it's the least we can do.  My little blog still seems to see a little more than  a hundred readers a week.  If we each gave just $5, that would get us halfway to my goal. I hope you'll join me. I've create a Chip In widget. If you click on it, you should be able to donate any amount and do a small blessing for Trycia's family.

I will miss my friend.  I am so grateful for the last conversation I had with her. Trycia was a performer- a singer and a dancer and she loved being that.  I know that cancer tried to steal that from her and that it was painful and difficult for her to dance in the end.  My greatest comfort is in knowing that she is dancing free of pain and entertaining the angels in Heaven now.  Goodbye for now, sweet Trycia.  You were taken from us far too young, but your spirit lives on in so many of us.  Dance, sweet friend. Dance.  One day, I will join you on the stage again. I love you.


 

What to Expect when You're Not Expecting it....

I ran a mud run two days ago. Yes, I knowingly, and willfully, got muddy. On purpose. Initially, I decided to do this with a good group of girlfriends, all with the idea that we decided to do something, "Not because it is easy, but specifically because it is hard." (Direct, rockin' quote from my friend CJM, who was the inspiration behind this adventure.) I'm down with that. I hadn't fully taken on this goal in my heart, to be honest though. I didn't train like I should and I saw it more as a social outing than a true personal challenge. Come race day, I told myself that I would go with whatever felt right...stay with the group, run off on my own...I wasn't sure. As we approached the starting line and the gun went off, my body went into goal mode. I came here for a reason. I came here for a physical challenge. Although I was with a group of girlfriends, the true challenge was individual. I began to savor the sound of my feet hitting the dirt and focused on my breathing. No ipod to distract me, I heard the sounds of the earth, nature and observed the gloriously beautiful spring day. I stayed with a friend for about a quarter of a mile and then let her pace take her where it was going to for her, and mine for me. It was peaceful. It was painful. It wasn't at all what I expected. I had joked that because I don't like being cold, maybe I would avoid the lake obstacle near the end, or skip the push up section, but as I approached each, I thought to myself, "Well, what did you come here for Jen? You came to do it, so DO IT."

I finished the race and completed all of the obstacles, including the insanely steep, long, uphill mountain trail that has left me nursing my painful shin splints incurred by running down hill. I get it now: The race mentality. There is a definite high from specifically putting yourself into a challenging position and persevering regardless of how difficult it is. Even though I don't consider myself a runner and have never really enjoyed it, I "get it" now.  It was truly an experience I won't forget. I hope my fellow mud runners won't mind this, but I have to post our "After" picture from the race...




We attended a Birthday Party for Elijah's friend Benjamin last weekend. I'll be honest in saying that I was a little nervous.  I have been 100% relieved of the baby comparison games between Elijah and typically developing kids.  (These are the games that you either play or fight playing from the moment you have a child and realize there are other children in the world the same age.  Did yours crawl earlier? Talk sooner?  Make friends later? You just cannot help it.  Even when you're a down to earth person.)  Books like "What to Expect: The First Year" and "Your Baby's First Year: Week by Week" give us guidelines of what kind of milestones typically developing babies will go through and when.  I used these when Christian was a baby and usually they were a source of panic.  Wait..what?? He's supposed to be starting to take an interest in books at 4 months of age?? Really?? Oh no...I don't think he's doing that yet... Yeah.  This time around, I threw out those books.  I mean literally. I put them in the trash can. (Okay..okay...I might have given them to Goodwill, but I got them OUT of my house.)  However.........when it comes to trying not to compare to other kids with Down syndrome we have a whole other head trip.  Perhaps because of all of the possible problems- both learning or medical or both, I find myself reading into more, as if it is a sign of what the future will hold for Elijah, cognitively.  I have to continually remind myself that whether a child is an early walker or talker (within the typically developing community) doesn't have any bearing on how smart or capable they will be.  Same with late walkers or talkers- it doesn't usually have anything to do with their intelligence.  So why do I get so tied up in knots about what it will all "MEAN" for Elijah?? Probably because of the unknowns. Probably because I have worries about what Elijah will be capable of. What his life will be like. Will he have a job? Get married? Have friends? Be able to read a book?  Will it matter???  The comparison is not about whether someone's kid does something first, it's more that I worry if my kid ever will.

I was put at ease at Benjamin's Birthday Party. There were 4 babies all born within weeks of each other (All near 2 years old), all with Down syndrome, all boys. All different.  Yes, Elijah is on the weaker end (physically) than most of the other boys to some degree.  One boy is practically running. One boy is on the verge of walking.  Benjamin has a decent number of words, lots of signs, and blew out his Birthday candle on command (!!! Tears sprung to my eyes, by the way.  Turns out that it doesn't even have to be my own kid for me to be proud!) I was able to see Elijah's strengths as well as his weaknesses.  You know?...Elijah is kind of funny.  He's super social, loves crowds, loves to laugh and just "goes for it" when it comes to life.  I love that about him.  So, my mind was eased quite a bit last weekend. There isn't really all that much to compare.  Each of these kids is different, and although they are challenged by some of the same obstacles, they will handle it differently and in their own time.  What they do share in common, frankly, gave me a good laugh...us Moms bonded over the fact that there is throwing...a lot of throwing..., hair pulling, and unabashed shouting without warning.  These are not necessarily the traits that I love in Elijah's behavior right now, but actually...they are kind of typical...and if you let them be...kind of funny.  Happy 2nd Birthday, Benny!  I am amazed, yet again, that I learn my most profound lessons from a room full of children with Down syndrome.  See what happens when you're not expecting it??


End of the party photo- the babies were pretty worn out from all of the partying at this point! :)



In between the concern over Birthday parties and running in the mud, we celebrated a beautiful Easter together as a family. We colored eggs with friends, hid eggs to inspire childhood traditions, celebrated all that we believe at Easter service at church and perhaps the best part: Enjoyed a relaxing time eating dinner and hanging out with family.





We are so blessed to have my family close and to have them be such a regular part of our lives.  As we were wrapping up on Easter day, I asked my niece, Ciara, to watch Elijah by the staircase while I went to the bathroom.  I called over my shoulder, "Don't worry- he can't get up the stairs, but keep an eye just in case!" I came back from the bathroom, and sure enough, there he still was: at the bottom of the stairs, looking longingly up to the top of the staircase. That's when he began to climb...One knee, one hand, then the other...slowly one stair at a time.  By now, the whole family gathered- keeping one hand close, just in case he launched himself backwards. We hooted and hollered and Elijah took a pause now and again to applaud for himself.  He did it, though. He climbed all the way up the staircase to the very top. By himself. See?? You just never know...You never know what to expect- especially when you're not expecting it...

Worthy and Wonderful

I blame The Hunger Games. I took a break from my blog- and practically from my life- to read a three part series of books. Really, it's just an excuse, because actually reading The Hunger Games trilogy took less than a week out of my life. I've found myself resistant to putting words to a page lately. Partly because I feel like nothing out of the ordinary is happening, but partly because I feel a current of emotions bubbling under the surface and am unsure of what form they'll take if I truly write a stream of consciousness.

I'll start with the simple:  A friend called yesterday and said that she was going to head up to a local mountain range to find snow with her son and would we like to join them. I wavered. Elijah had a Physical Therapy appointment, I had proposals to write, a house to clean up, papers to organize.  Then I thought about the last time I was truly spontaneous- not just the easy spontaneity like not doing bills and watching TV instead, but the kind of spontaneity that requires truly throwing caution to the wind. So, I said yes. I canceled our day, frantically gathered up down jackets, snow pants, mittens, gloves, boots, snacks, toys, diapers, wipes and drinks and threw them all in the back of the car. Our friends arrived and together we loaded more into the car: a toboggan, a plastic sled, snow shoes for me, more down gear, rain pants, a set of snowball makers, more drinks and snacks and then we were on our way!  It took us about an hour and a half to reach the Mt. Baldy Visitor Center, which was closed.  The sight of a woman in tank top walking along the side of the road, followed by a guy who literally had no shirt on, did not bode well for any actual snow sightings. Oh, we could see snow- but it was so far up the mountain that we knew it wasn't going to happen.  We tried telling the boys that we have been having a fun adventure, but that unfortunately we wouldn't be able to reach the snow as it was too high up.  I'll just say, There were tears.  We drove up and up, and just as we reached the crest of the road, where we wouldn't be able to go further, we spotted it: Snow, just a mere 50 feet away.  It was just a patch, but it was enough to put your hands in and say you touched snow!  Cue the Hallelujia chorus.










And the best part?   We can say we made a snowman this year...



The ride down the mountain gave my friend and I a chance to really talk, while the boys were busy with their running commentary on how we were going down, down, down. We talked about my friend's recent health scares, which could actually turn out to be something scary. We talked about unknowns, expectations and the things that we hate the most. For her, it's the idea of having to rely on others. She is a super independent, capable and commanding presence who tends to be the caretaker, not the cared for. I get it.  For me, the idea I hate the most is being pitied.  I see it and hear it in people's faces and voices when they first learn the news of Elijah's diagnosis. The work I have to do, is to let that go.  My life is wonderful, Elijah (and his diagnosis) is everything I could have ever wanted.  So, why do I let what other people think get to me? I think in part, because it's so off base.  It would be like having people think you failed a test, when in reality, you aced it.  I guess it doesn't really matter what people think, because at the end of the day, you still aced the test.  But, it's annoying because the perception is off. I feel that way about Down syndrome.  The perception is SO off.  People have said things to me like, "Well, a Mother always wants to have a healthy baby."  This is true,  but I want to say, "Yes...but even if your baby wasn't "healthy", you would be okay.  In fact, you'd still have a really, really good life." Having a "healthy" baby doesn't guarantee anything either. Luckily, we haven't had to deal with medical complications for Elijah, because I know from friends that do deal with it, that it can be draining and stressful.  I also know that my friends who have children with medical concerns, still have a great, great life.

Part of the undercurrent of bubbling emotions I mentioned, surrounds an article I recently read.  A couple in Portland, Oregon sued their Doctor and Health System for a "Wrongful Birth".  Yes, the couple had a child with Down syndrome, but their pre-natal testing (it is unknown which form of pre-natal testing they did) did not disclose the Down syndrome part.  The parents sued and WON because they said that if they would have known in advance, they would have aborted their child (who is now 4, by the way). They won 2.9 million dollars. The money is said to help offset the life long medical bills and additional care their child might need. I feel nauseous.  I feel nauseous because there is already a 92% termination rate when a woman gets a prenatal diagnosis. There is already a heavy emphasis by the medical community to terminate these kinds of pregnancies (ask anyone who has had a prenatal diagnosis). Now, a precedent has been set. If the medical community makes a mistake in the testing phase, they will be financially liable for the outcome.  Believe me when I say that we were terrified of what having a child with special needs would mean for us financially. Terrified.  We came to learn, that luckily there is assistance. Elijah gets the early intervention that he needs without cost to us (the taxes we've paid our whole lives lend to this), and now we have assistance with his medical care through Medi-Cal. We are a family who needs this assistance. The 2.9 million dollars that the Portland couple received puts a bounty on these babies' heads. Here is the reality: My child is worthy, loving, and deserving of life. No one urged me to have Elijah, though. I was reminded that termination was an option by my Perinatalogist. I was reminded that termination was an option by people I know.  I had friends support me no matter what my decision was going to be.  Maybe it's because I never considered not having Elijah and most people knew that, but NO ONE said, This baby is your son and he will be everything he was meant to be in your life. You have an option to keep him. And now, thanks to this couple in Portland, no one ever will.  At least, no one in the medical community ever will.  I even offered a copy of a beautiful book I was part of called "I'm Down With You" as a gift for my Ob-Gyn's office.  She vacillated and said that she would have to get clearance from the other doctors in her practice.  Clearance to leave a book lying around that showed beautiful pictures of worthy human beings?? She's right.  She needs clearance. Because now, she just might get sued over it.

Moving on...

We met Elijah's new Medi-Cal approved Pediatrician last week.  It was a successful well-baby visit and the doctor asked a lot of questions and got to know us a little bit.  At the end of the exam, she said, "You really know a lot about Down syndrome."  Ummmmmmmmmm.....My mind flickered through the motives for a statement like that: a) And she doesn't?  b) I do actually know a good amount about Ds, because my child has it... c) Maybe the general socio-economic status of the patients she sees affects their ability to educate themselves about their childrens' diagnoses?  Hopefully the answer is just b and/or c. We go back next week for a routine blood test and immunization.

I wrote my last post about my search for an elementary school for Christian.  My favorite, The "Friday school" as I've called it, had their admission lottery last week.  We haven't yet received a spot, but we are only #14 on the wait list.  I'm told this is a near guarantee. So, I'm optimistic, but until we receive an official spot, I'm not celebrating and I'm moving forward with other options.  If, or when, a spot comes up for the Friday school, we'll jump at it- no matter if Christian has started elsewhere.  But, just in case this is the one weird year where everyone takes their offered spot, I don't want to be left with no place for Christian to go. I am suspicious of my odds ever since I struck a 1 in 770 chance of having a baby with Ds.

The last few weeks have revealed new milestones for both of my boys.  Elijah is officially cruising and Christian is riding his bike.  The sidewalks and streets around our house are difficult for learning to ride a bike, so Christian really has had no practice at it until recently.  He took to it like a pro and I have no doubts that if we keep at it regularly, that in a few weeks he won't even need the training wheels! Watching Elijah walk down the length of the couch to retrieve a toy is a sight for sore eyes.  I teared up and actually said to the therapists, "He is actually going to walk someday!!"  Of course he'll walk.  It was never a question of if he'd walk. But because I had put it as a distant milestone, a part of me felt like it was so, so far off.  But, it's not.  Before I know it, I'll be having a hard time remembering the time before he learned to walk. I'm not the only proud one in our family.  I overheard a conversation between Christian and one of his young friends (talking about Elijah): "Yeah...and he says 'all done' and bye bye' and he claps too!!" (All said in the most excited voice ever.)  And the admiration is mutual.  While I pushed Elijah in the stroller behind Christian, who was riding his bike, I encouraged Christian's riding.  I shouted, "Great job, sweetheart! You're doing it!"  Elijah clapped and shouted right along with me.

While I will always fight the urge to not care what others think, I am at peace.  I did "ace the test" and even if no one else knows it or sees it, I know it. Now, I'm off to go give my kids a kiss...







Photos courtesy of my Dad, who said, "It's not difficult to take great pictures when you have great subjects." Very true. :)

Out of Control

It's easy to think we control it all.  It's easy to think when you work hard, or persevere, or have the right connections that you can make things happen.  It feels that way sometimes.  Today, I was reminded in the most difficult of ways, that we are not in control. A friend who was just over at our house on Oscar Sunday, went in for a routine knee surgery a few days ago, and now is pronounced brain dead, leaving behind his wife & soul mate, and his young son- the same age as my firstborn. We are not in control.

I had a very different idea of what I would be writing about today, as I have been navigating the process of finding an elementary school for my boys.  Losing our friend and wrapping my brain around how we can support and comfort his grieving family, gives new perspective to the idea of what we can do and what we actually are in control of. I had a full week of school tours and each one bettered the last.  It is a good problem to have. The school I toured on Tuesday surprised me and impressed me with how accessible the principal was and what a community feel the school had. The school on Thursday knocked my socks off, with the dazzlingly beautiful campus, the amount of parent involvement and the number of friends we have that attend there. The school on Friday blew me away and offered everything I ever imagined for my boys, specifically.  I am resolved. My boys will go to the Friday school. How could God's plan be anything different, right? In light of the sudden passing of a friend, I know that things don't always work out the way we plan...and yet, we must keep moving forward, doing the footwork that is our part.

A little about why I fell so in love with the Friday school: There was a great buzz about this school being a great model of inclusion. This means that the school believes in a community of inclusion, where students of all abilities- from gifted to having special needs- learn in the same classroom and no one is made to stand out as being different. Just writing those words brings pangs of hopefulness and happiness to my heart- not just because I have a child with Special needs, but because I love the idea of my older son learning and playing amongst children of all different abilities.  That he might grow up in a surrounding where there is no negative stereotype, bias, or discrimination.  When I went to school, any children with special needs were shuttled off to their own classroom in the far corner of the school, where you might see a wheelchair pass by, but other than that there was no interaction.  This created an environment of discomfort. Who were these kids? Why were they so different from me?  Were they actually so different from me after all? I never knew.  Their diagnosis were never discussed, never explained, never put into terms that I could understand.  I never saw a balanced side.  I never saw that maybe "that girl" liked to play with Barbies as much as I did, or was a die hard Depeche Mode fan when she got to high school too. When I toured the Friday school, which has a population of 80% typically developing kids to 20% kids with special needs, I saw kids interacting with each other with no bias about the other's needs. I watched 3 girls who seemed to be typically developing, surrounding a girl in a wheelchair, who I guessed might have cerebral palsy. They were laughing and talking like any 4 girls at school might.  I wanted to cry on the spot. This is just so far from what I experienced as a kid, and I wish that I had the ease and comfort level around kids who I saw then as "different".  Even as an adult, I find myself automatically starting to freeze up around anyone with a disability.  I thought that being the parent of a child with special needs would change that, but I guess the years of the fears and uncertainty of the unknown is too ingrained in me to override that first impulse.

The Friday school also offered a slightly different learning style (probably to accommodate the different ability levels). Instead of the typical Kindergarten academic model that I had seen at all of the other schools, the Friday school had the Kindergarten class broken up into 4 groups of 5, each working as a group on a specific task- and each, with it's own teacher, teacher's aide or para professional (usually a staff member undergoing specialized graduate work in child development or education). One station was doing math, while another was working on writing, another worked on pre-reading skills on ipads, while the last was doing some game with patterning problems. I could immediately imagine Christian learning well in an environment like this. The children were engaged and focused and doing impressive work.

I also loved that there was a heavy influence of the arts at the Friday school.  An art lab that made my eyes spin and a choral and music program that was required through the 5th grade.  An outdoor classroom, where the children learn outside instead of in (2 days out of the week!!), and where they perform...wait for it...Shakespeare in "the park"!!!! (Be still my artistic heart.) Cue the heavy sigh of longing. So now we wait.   The school takes entry through a lottery, with the only preference going to siblings of current students and staff members' children first. If we get chosen in the lottery, we will know something by the end of this month.  However, it is also possible that some families chosen in the lottery will accept and then decline later and we could get a call...well, even after Christian might have started at another school. It's possible that I will have to choose another school and move him later.  It's possible that our lottery number won't come up at all this year. If so, we'll try again next year. And the year after that. And the year after that, if necessary.

So, I am out of control.  Earlier this week, I jokingly used the "out of control" context as one where I was being so anxious and frenetic and worried and crazy about this whole school process.  Now, I just simply know that I am not in control of the outcome. In fact, tomorrow is not even guaranteed to us. I called my sweet friend who is needing to make the decision to take her husband off of life support, and we cried.  We just bawled and bawled about the fact that he was such a good guy, such a good Dad, such a good friend. That it is so sudden, so unfair. This kind of thing is not supposed to happen! My sweet friend is worrying about everything from the little things of how the maintenance of the house will be handled, to the big things, like how she will tell her small son that his Father just died? How she is going to be strong for him? Life is not fair. We are not in control. Not of the good things, and not of the bad things.

Nothing snaps you out of the inner brain whirlwind more than the loss of a friend- especially when it is sudden and unexpected. I have said I love you and drive safely and looked just a second longer at each of my boys and my husband in the last few days.  I am grieving for my friend and the path that she has to walk right now.  While she and I met initially through a mutual friend, we became close because of the outreach and support she offered me while I was struggling with Elijah's diagnosis.  Now it is my turn to reach out and offer support for her. 

If I were to close with the one thing that is on my mind: Hug your husband. Hug your kids. Say I love you to the friends that you do. Our time on earth is finite.

Thank you friends, for all that you enrich my life with. Especially, Thank you to Steve: for whose time on earth was spent cherishing the ones he loved. There was never any doubt about the abundance of love he had for his wife and son.  He will be missed and each who knew him is richer for it.

A Month of Milestones

I have the best problem in the world right now: I can't keep up with all of the milestones my littlest guy is rolling through this month! It was a week filled with:

The continuation of Elijah's ability and willingness to pick up and eat any and all foods- even the slimy, sticky or wet ones! (He ate oranges, bananas, baby quiches, pasta with marinara sauce on it and so much more, with his hands!)

He has started crawling on hands and knees!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! (Was that enough exclamation marks? No.!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!)
It started Wednesday when I encouraged him up onto his hands and knees and then kept calling him to come over to me. He did- and did it all on hands and knees!

He started shaking his head no.
I laugh a little about this one, because as much as I don't really want the "no", I'm thrilled that he gets it. He has probably known it for a long time, because he used it perfectly, and within context: Friday morning as I was coaxing him to practice his hands and knees crawling, he would do 1 or 2 rotations and then sit down and shake his head "No". (He also has the "Yeah" down. But, he actually SAYS "Yeah." and it's the cutest thing ever. He says it for everything that requires some type of affirmation- I pick him up (Yeah. Yeah.), I put him in his high chair to eat (yeah. Yeah.) The speech therapist asks if he's ready to play (Yeah.) He never says "Yeah" for "No" and while I don't think I'd mark it as his first word yet, it certainly is a sound he's using appropriately.

He got another new tooth!
I literally just noticed tonight when I was giving him dinner. He's been chomping his gums a lot the last few days and now I think I know why- he's checking out his new chomper (it's a molar).

Lastly, he is getting the hang of drinking from a straw!
This is beyond exciting for me, because he has been resistant to drinking liquids other than his morning bottle every day. I have to give him little sips throughout the day and add water to his food whenever possible to make sure he's getting enough. He showed a few glimpses of interest in drinking water last week, when he pointed to the sippy cup during dinner. I gave him a sip and then he went on with the meal, pointed to the sippy cup again and again welcomed the drink of water. Tonight, however, when I put the straw cup up to his mouth (we have one that you can squeeze a little to help out those kids who aren't yet sucking on the straw) he began to suck on it. I feel like all week I've been texting our therapists with each new exciting milestone, but decided to restrain myself and let our Occupational therapist have a weekend without my updates. Ha ha! (But, I seriously can't wait to tell her next week!!)


I caught some of the crawling on video and want to share: (Don't forget to pause the music player at the bottom of the page if you want to hear the audio on the video.)


So cute, right?!

My business has been taking a lot of my time lately and though I try to balance it all, I often find myself missing relaxed down time with my boys, so I've been really trying to make the most of our time together- even if it's just some time out in the backyard, swinging on swings and painting Christian's "Painting House". I brought my camera out with me a couple of times this week, because I'm really enjoying it and trying to figure out what I'm doing and trying to get better at taking pictures.  Here are some I enjoyed this week:


Sweet Elijah, smiling for the camera. Even though just an hour before this photo he was diagnosed with a perforated ear drum and an ear infection, he was my happy guy anyway.

 

At the park today, doing his favorite park activity...



My beautiful big boy,Christian, who has of late started lifting his shirt up to show everyone his muscles and let us know how big and strong he's getting.  And he is. At an alarming pace.



Gotcha! (He's fast. If I take enough photos I might, just might, be able to catch him in action.  Thank goodness for manual shutter speeds!)



Christian's love affair with Leo continues. 

Christian is such a sweet boy and I love that he has his "pet" (Leo) to learn to be nurturing with.  He said to me this week:
C: "Mom, if you were sick, I could take care of you."
Me: "Oh really, sweetie?  How would you take care of me?"
C: "Well, You'd get lots of sleep, and I'd give you medicine and bring you snacks.  Plus you'd get to watch TV."
Me: "Wow, sweetie! That sounds great.  I'm so glad you'd take such good care of me!" (Kinda makes me want to be sick...)

It's been a month of amazing milestones, with new things coming up for each of my boys each week.  With Elijah, every milestone is so hard earned that we celebrate and notice even the smallest things you might never have noticed before. With Christian, he is speeding through milestones so fast that I can't even wrap my head around how he learned some things.  He's like a sponge.  I had a great talk with a girlfriend today about how we are trying to learn how to parent each of our children to meet their unique needs.  The extra chromosome Elijah has really doesn't have much to do with it- my boys are different, and most everyone I know who has more than one child will say how different each of their kids are.  They can come from the same "mold", but they'll never be the same.  I don't have the answers about how I will handle each of my children and in what ways I should do things that suit their individual needs.  I hope that I will figure it out as I go.  But, I do know that they need love, and I will love them.  I do love them.  I'm pretty sure that is the first step.

"A baby is born with a need to be loved-and never outgrows it." -Frank Howard Clark