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

Boys will be Boys

I started a post detailing some of our week this week, and then word by word, deleted it.  I don't know, maybe I don't feel like writing, but probably more likely I don't feel like writing about the daily stuff that gives you a scare, but ultimately turns out just fine.  We had a week like that.  Here's the summary:

Christian tried standing on a tall basket of stuffed animals in his room, after bedtime, in the dark, fell and injured his nose. I thought it was broken. It wasn't. He is just fine and I was more bothered by the injury than he was.  He bounced back fast.




These pictures were two days post fall and you can still see the bruising and swelling.  And you can see the smile. See? Him: fine. Me: traumatized.

Elijah crawled into a toy box, got stuck upside down while some plastic train bridges stabbed him in the eyes and face.  Short of a couple small scrapes, he's fine.  I start imagining how this exact scenario is how a small child drowns in 2 inches of water in a bucket.  Yeah. My mind goes there. But, again, He is just fine. 



Later in the week, while putting Elijah's shoes on him, one of his toes probably got folded over and stuck awkwardly within his shoe.  Elijah's muscle tone is low, which makes his flexibility high. I mean, REALLY high.  This kid can slide in and out of every kind of split without a moments hesitation.  We spend our time trying not to let him do half of the moves he wants to do.  So, when a toe gets folded over in a shoe, it's not such a big deal to him.  Only, I have no idea what's going on and two hours later when the shoe came off, his toe was red and angled funny and he was crying like a banshie. I was convinced I had broken it somehow.  Again, no broken bone, and Elijah was back to normal, happy mode by the next morning, while I was still a little doe eyed about the whole thing.  

Boys will be boys. And, really, it's not just boys because I'd be generalizing in saying that...but Kids. Kids will be kids. They will break bones and bounce back. I'm the one who doesn't bounce back quite as fast when these things happen to them. I will not always be able to protect them- from falls, or broken hearts, from bad judgement calls, or hurt feelings. That is probably the part that gets me most as a parent: That I have been put "in charge" of these little lives for awhile, and that even though they are in my care, they are their own people who will make their own choices, their own mistakes, but also their own successes. I can love them and be there for them. I can help set some boundaries and consequences for when they aren't acting like kind, respectable people. I can only prepare them for this world...I cannot cushion them from it.  I find that both intoxicating and terrifying at the exact same time.

My boys, despite my best efforts, got a little bruised up physically this week. I got a little bruised up mentally this week. So, I took an opportunity to spend a little quality one on one time with each of my boys today. I took Christian with me for a hike to one of my favorite places.  We needed some fresh air and a little adventure.  I had a feeling Christian would love it and I was so, so right. He couldn't stop smiling the whole time, and frankly, neither could I.







My boys bounced back fast from their injuries this week, so I took a cue and had some time to bounce back with each of my boys- playing and snuggling with Elijah, hiking with Christian and then a dinner and a play with Charles.  My emotional reserves are filled up and I'm ready to go!!.......Almost...

Let them Eat Cake

Cake at a Birthday party is a right of passage. You don't think much about it.  When Christian turned one, my biggest decision was "Do I really want to give him a full-of-sugar piece of cake, or should I go with something healthier while I still can?" We opted for a homemade carrot cake cupcake as a first, and boy did he love it!





On the other hand, when Elijah turned one, I chose with a semi-heavy heart, not to try for a "First Cake" experience.  Elijah just wasn't self feeding at that point and it seemed as though it would be an exercise in disappointment to try to make a big deal out of something he just wasn't ready for.  Since then, we have realized that Elijah's self-feeding issues are mostly a result of Tactile Defensiveness issues.  Basically, he doesn't like to touch certain things.  He especially doesn't like to touch wet or sticky or slimy textures.  Turns out, that if you've never had to consider it before, most food falls into a wet, sticky or slimy category.  So, Elijah has been resistant to most foods that he has to touch.  Luckily, he is a champion eater as long as he's being fed and doesn't have to touch anything himself.  For about the last 6 months, Elijah has been able to self feed with very dry items: at first, just baby puffs, but more recently the list of dry ingredients has expanded to include crackers, veggie chips, rice cakes and more.

This week we had a major breakthrough.  Probably due to my own hunger, I sat down for dinner with my boys and put a few pieces of a burger and fries on Elijah's tray.  I was too hungry to wait and thought that he could sit in front of it for awhile, try it, or else he'd get something fed to him as soon as I was done. I fed him a little piece of the burger and could tell immediately that he loved it.  I continued to eat my own meal.  I watched Elijah out of the corner of my eye as he studied his food.  His hands began opening and closing, fingers wiggling, and eyes wide, as if to say, I really want it....but I don't wanna touch it...but I do want it..  A minute or so passed, when all of a sudden Elijah picked up a piece of the burger, looked at it closely and then popped it into his mouth. It took every ounce of self-discipline I have not to jump up like a wild woman doing the Hallelujah dance.  I played it cool.  He picked up more food. Ate it. Looked up at me and when I gave him the choice of "All Done?" or "More?", he signed, "More".

He. ate. the. entire. meal. ALL. BY. HIMSELF!!!!!!!!!!!!!

Tonight, I thought a lot about what else I could try giving him.  I thought that beans might be a good try, since they can be soft, but aren't too wet and slimy if you dry them off.  I decided to make chili.  (I know...I know...how is chili not slimy??)  I spooned a serving of chili onto a plate to cool off and then patted the ingredients with a napkin so that they weren't too wet...however, it was CHILI, so I wasn't able to get all of the "wet" off.  I put some things down on Elijah's tray and then fed him a piece to prove to him that it was yummy.  He looked at for a few seconds, then reached down, grabbed a piece, and started eating.  As I replenished his tray, I got less and less careful about the pieces being dry and soon enough, Elijah was picking up and eating messy pieces of chili ingredients that had just come out of a wet and slimy pot.  That's when I broke out the camera....





Just about a month ago, I was realizing that Elijah's second birthday isn't too far away (End of April), and I asked his Occupational Therapist, "Elijah is going to be able to eat cake by his second birthday, won't he?? He needs to be able to eat cake by his second birthday!" (Probably said with something of a whimper.) I think we've turned a corner...and I think cake is in it!!

Looks like we'll have some cake testing around here...good thing I'm going to the Los Angeles Cupcake Challenge next week.  I'll be able to bring back a few goodies...you know...just for "Practice".
;)

I love you, so what else matters?

Frankly, I'm a little weepy today. It's been one of those weeks where I felt like I took hit after seemingly-not-that-big-of-a-deal hit. Debit card fraud. Babysitter with Strep throat. Replacement babysitters who had to pass the baton with my kids, where one had to pick up her own daughter by a certain time, while the other sprained her ankle and was running late- all was while I was working and could nothing about it. Client was frauded out of 10 Grand...and then lost another $500 to a completely unsympethetic corporate establishment. I had to tell the news to said client. Mama Drama. And more...Yup. Pretty much been a weepy mess today.

I saw some friends today for a much needed hike. Upon meeting them, I told one friend with tears in my eyes that it had just been a really tough week.  She asked me later, What was something good that happened this week? And I told her something good. Because it wasn't all bad.  Tonight, as I was putting my boys to bed, I had this revelation...They rely on me. They need me. Even more importantly, they WANT me. That is good.  As I tried to tiptoe out of their room after "extra hugs", Christian stammered to tell me one last thing.  "But Mom, wait Mom....I need to tell you something...Ummm...Mom....."  And I just stood there. Patiently waiting. Because I realized, even though he is "stalling", he wants me. So I just stood patiently and waited for him to tell me whatever nonsensical thing he could think up so he wouldn't officially have to go to sleep.  Usually these Stall Tactics drive me crazy, but tonight I just looked at my beautiful son and stayed put while he stammered out his excuse for needing to desperately tell me something. And I smiled. He wants me.  It won't always be like that.

Christian is at such a sweet age.  The things he knows now. The things he notices.  We walked by a trophy shop the other day and he says, "I've never had a trophy, Mom." Frankly, I didn't even know that he knew what a trophy was...  Today's conversation in the car was pretty awesome, but made me weep even more.  I'll insert here that I have really been missing my dog, Buddy, lately.  When Buddy was around and I had a hard week, I could just wrap my arms around him and weep to my hearts content.  Then, he'd look at me with that knowing look...that look that said, Well.....I love you, so what else matters? Today I found myself choked up about Buddy, because I used to always hike the trail I did this morning, with him.  Later this afternoon, as if Christian could read my mind, he said this:
C: Mom. Am I getting my doggie yet?
Me: ...You mean, are you getting a dog?
C: Yeah.
Me: Well, not yet, Sweetie.  We will get a dog someday, but not yet.
C: Is God making it right now?
Me: (Trying not to laugh/cry) Well.....God is making dogs and one day we will get one of them.
C: Aww....but it's taking a really, really long time!!!
It is an amazing age. It's conversations like that that make me want to run out and get a dog. Even though I don't feel ready, and even though we said we'd wait until Elijah is walking and even though...even though...
Even though... It would feel really good to bury my face into a dog's mass of fur and weep my eyes out, just so I can get that look.
I love you, so what else matters?




Elijah is going through separation anxiety. It's specific to me leaving the house: He sees a babysitter, he starts to cry. He wants me. And yet, it makes leaving so, so hard.  One of our therapists is a say-what-she's-thinking, perhaps a-little-bit-cynical personality type. I told her that we were having a tough time with the separation anxiety and she said, "Well, he's finally seeing the object-permanence connection."  I sort of just nodded, but thought:  No.  He figured that out quite awhile ago, but now he sees the babysitter to Mom leaving connection.  Next, I shared that Elijah had his very first Speech therapy session last week.  I was so proud of him!  He did great!  He was very focused and engaged.  He watched the therapist's mouth with interest. He even mimicked her a few times throughout the session.  Plus, she used a lot of sign language.  It was the very first time I'd seen an example of someone using it within daily life.  For the very first time, I thought: I can do this.  I get it now! So, I shared the experience with this therapist.  When I told her how focused and engaged Elijah was, she said, "Oh yeah, probably because it's new.  A new environment." This time, I actually said, "No.  I really didn't get that it was because it was new.  He was really engaged and it was great."  I don't want my child to be underestimated.  As much as I LOVE our therapists (and I do!!!), they are not with Elijah like I am with Elijah.  They don't get to see him 90% of the time. It's easy to think that they see so much, and even though we are scheduled to have  therapy 7 times a week (!!!*) that is still only 7 hours out of week that has about 63 hours of awake time.
(*Between therapists schedules and ours, we have yet to make all 7 in one week so far.  But, Speech just started. So, we'll see...)




The readers digest of it all is that I'm really overwhelmed. Things are busy and I'm responsible for a lot right now. My kids, my business, my clients, my dance students, my home, myself...I was having a little pity party moment, which I am giving myself complete freedom to have, but I saw the light tonight. My boys want me. And as much as I miss my dog, my boys give me that "look" all of the time: I love you, so what else matters? Yes, I can't escape my responsibilities right now.  Yes, I have a lot on my plate right now. Yes, I might need to weep a little and have my pity party from time to time.  My boys bring me back to what is important and keep me going. Sometimes it's these little souls that stop you mid-weep to remind you...

I love you. So, what else matters?