New Beginnings

"They grow up too fast"..."Time flies"..."Savor the moment": All things that people who have traveled the road before you say in regards to raising kids. All true. And yet, no amount of "savoring the moments" will actually slow down time. They do grow up fast. Last week we celebrated Christian's graduation from preschool. We were barely off the premises before he asked if he was going to Kindergarten next. I responded with a tearful Yes, only to realize that he literally wanted to go to Kindergarten RIGHT THEN. As in, let's get in the car and go!


 Christian with the director of his preschool; Christian and teachers, Kathy & Colleen

The 2012 graduating class celebrated with a special Graduation Field Trip & Picnic. The kids got to ride in a school bus all by themselves (with teacher escorts, of course!) while the (non-petrified) parents drove separately to meet them all at the park.  When the kids walked out of their classrooms in their matching class t-shirts, holding hands and ready to board the bus, they looked so small. I started welling up over the fact that even though my firstborn is already 5, and the "big boy" in our household, he is still a little guy- super excited about a bus ride with his friends and super, super, super (in his words) excited about a new beginning at Kindergarten this year.



I've been assessing where "I'm at" over this last week, and the conclusion I've drawn is that I'm feeling truly happy. I have a slightly reduced work schedule now through to August, which means more quality time with my boys. I have a fabulous group of friends and family, who I am finding a decent balance of time spent with. I'm fairly "angst free" right now, and it feels great. This mood leaves much to be enjoyed, and puts me into a spirit of gratitude for the new beginnings we're about to embark upon. Plus, it's summer! I get almost equally excited about each new season, yet I always find myself caught off guard by the anticipation and excitement of hot, lazier days, during which our biggest decisions revolve around  Sprinklers or Slip and Slide? Watermelon or Strawberries?  Swim Lessons for just one or both boys? Mini Vacation or Staycation?







New Beginnings are often a source of anxiety as much as they are of excitement, and the changes we're looking forward to are no exception. This year, I'm embracing it with a smile and a solid knowing in my heart: We're good.  We're happy.

From Here to There

I'm heavy with thoughts today. It's been a week full of doctor appointments and check ups with Elijah. The first was a visit to the Orthopedist to see about getting Elijah some "braces" to keep him from relying on his hypermobility (extreme flexibility) in standing. (Basically, in a kneeling position, instead of putting one foot underneath himself and then standing up, he just grabs onto something and rolls right over the top of his feet.) He'll eventually learn to do it right, but this is the goal of early intervention-approach the learning of skills from a variety of angles and hope for a benefit.  I definitely see that there is a benefit. It is not a direct relation, though. It's not as if 5 therapies a week gets one result while 15 therapies a week would get a much better result.  It doesn't seem to work quite like that, but I definitely see an improvement. The Orthopedist was nice enough, and he's even just finished treating my nephew for a broken toe, but he flat out said that he doesn't believe that physical therapy does any good and that braces for Elijah won't make any difference. Our physical therapist was with us on this appointment and she was pissed. Ultimately, he gave us what we wanted, which was the referral for the braces, but he was clear in his stance. It was pretty maddening. Last I checked, medical school is training them to practice medicine, not study a control group of people who have had early intervention vs those who have not.  As a Mother, I have one goal: advocate and help my kids. I would SO much rather err on the side of trying something that didn't help, than to err on the side of not trying when something really could have helped. The Orthopedist also x-rayed Elijah's neck for an uncommon condition that causes instability in the neck and spine and would require surgery to fix.  He was very sure Elijah wasn't going to have that, but did an x-ray just to be sure. 10 minutes later, after he read the x-ray, he popped back into the room to tell us the x-rays were clear for that condition.  He repeated that it was a really uncommon condition and it was unlikely that he would have had that. I looked straight at him and said, "Yeah, well it was 1 in 770 that I was going to have a baby with Down syndrome and it happened. I really don't rely on "uncommon" anymore." Smiley face.

Our next appointment this week was with the Ear, Nose and Throat doctor. I wanted to have Elijah's ears checked again, as he didn't pass his last hearing test and had fluid in his inner ear. I wanted to see if we should be exploring having tubes put in his ears or if it had resolved itself. We waited an hour to see this doctor.  While waiting, 3 patients walked in the door: an adult woman with Down syndrome, another adult woman who had a typical appearance but seemed intellectually disabled in some way, and a man who also seemed intellectually disabled and who had clearly had some sort of ear operation (he had large doughnut shaped protectors over his ears.) I'll be honest in saying that it was a little scary.  Granted, of the 3, the woman with Down syndrome seemed the most engaged with her surroundings. However, she was the mental image I had always had of people with Down syndrome- tongue hanging out and clearly...different. It may have just been my imagination, but Elijah was looking right at her and only her. She kept commenting, "Look at that baby. That's a cute baby. Look at that baby." Elijah does look more like a baby than most 2 year olds, but there were 3 little kids sitting right next to this woman and she never commented on them at all. I kinda wanted to cry. I don't know this woman, and maybe she has had a really good life, but it didn't "look" like how I ever imagined a child of mine living a life.

  Last up in the doctor line-up this week, was the Opthamologist. I like this doctor. We have been to him before and he was the one who prescribed glasses for Elijah to help with his near sightedness. Insert the giant sigh. Elijah will. not. wear. his. glasses. He will not wear them Sam I am. He will not wear them with a hat. He will not wear them on a cat. He will not wear them up or down. He will not wear them if I frown. But, we went in for a check up anyway today. It was my secret hope that maybe he had outgrown the prescription and that he hadn't been keeping the glasses on because he wasn't seeing well...yeah...NO. He's still just as near sighted as before. The doctor gave us a new prescription and I said, "He will not keep the glasses on- not even for one minute. I don't know what to do." The doctor said, "It's tough, but in Elijah's case, the glasses would really make a huge difference in how he could relate to his world." What I heard was: "If you were a better Mother, then you could get him to wear his glasses." But, I know that no amount of Mother of the Year awards would change this right now. The best I can do is keep trying with the glasses and hope that eventually, developmentally, he'll be ready to wear them. Pretty much wanted to cry anyway.

Charles and I took the boys to a concert in the park this weekend. It was a wonderful night- the weather was amazing, the music fantastic and Christian and Elijah were soaking up every moment. At one point, I stood up and started dancing with Elijah. He has this full-out belly laugh anytime we dance.  It is the full and complete definition of JOY. I've never had an opportunity to witness something quite so contagious and pure. The park concert was no exception. Elijah had a ball! A little while later, a woman came up to me and said, "I wanted to tell you what a gift it was to see you dancing with your son.  We were enjoying the park before that, but that just made our night. That was pure joy!" I agree with her. I am just lucky to be the one that gets to dance with him and benefit from the joy of watching him belly laugh...




I had to throw in a photo of my sweetie, Charles, too. I was having a blast with a new 50mm lens I got and couldn't resist getting some love shots of my boys...


Christian "graduates" from preschool tomorrow. I don't know how I'm going to do with that. He is growing up so fast, couldn't possibly be more excited about the idea of Kindergarten, and is becoming more and more independent with each passing day.

"From there to here, from here to there, funny things are everywhere. Oh me! Oh my! Oh me! Oh my! What a lot of funny things go by. Today is gone. Today was fun. Tomorrow is another one." -Dr. Seuss

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. :)