This much I know is true

Life is never as much fun when you're sick.  Especially when you're sick and a Mom.  Because then there is no time for being sick...or, at least, no time for recovering from being sick.  Today, I had to try to pull it all together because Friday mornings are insane.  We had OT for Elijah, then raced to take Christian to preschool, only to race home to feed Elijah (again), prepare the snacks for Christian's preschool class (because I was "Snack Mom"), then cart everything (plus a tutu) back to Christian's preschool to set-up snacks and then speak to the class about being a Ballet Teacher.  Phew! Despite my annoying cold, talking to Christian's preschool class about being a Ballet Teacher was a highlight.  I'm not a dental hygienist. I'm not a CPA.  I'm not a graphic designer. I am a Ballet Teacher...and let's face it, that is almost as cool as it comes for the under 4 years of age crowd. They sat riveted as I put on my ballet slippers, turned on some classical music and whipped out a costume for them to see.  Because I am a Mother of boys, I explained how ballet is for girls and boys, but that I didn't have a boy costume with me.  When boys are in ballet, they play very important roles, like Kings and Princes and Magicians.  We pointed our feet, turned them out to make alligator mouths, did a plie, took turns spinning in the circle, and waved our arms in the air like a tree blowing in the wind. They had a dozen questions: Do you stand on your toes in ballet? (Yes, but only in special shoes called Pointe shoes....and sshh...there is a secret about pointe shoes. They are very painful to wear, but very, very beautiful...) What is ballet? (It's a special kind of dancing.) Where do you do ballet? (Everyone goes to a special place, called a dance studio. The dance studio has wooden floors and mirrors on the walls, so you can see yourself dance.) Did you know I like Star Wars? (Oh! That is very interesting!)  Christian was so happy to have me there, and followed along so well with all of my instructions to the class! (Which gives me hope that one day he'll dance. I'm not hoping for a professional, but it would be great to see him using the discipline and developing the confidence of movement.) Basically, it was the best possible being-still-a-little-sick day I could have.


(Here is Christian's class- last week we threw a baby shower for one of his teachers.  All of the kids were so excited!)

It was a week full of doctor appointments and assessments for my littlest man.  On Monday, we had a long awaited Audiology appointment to check Elijah's hearing.  He hears, that is for sure. However, over the last couple of months, I've noticed times where he is not responding to sound. At all. Then, a few days later, he is fine and responding to everything.  At the Audiology appointment, the Audiologist told me that his ear drums are not vibrating, which indicates that there is fluid behind the ear drum. This can hamper hearing. She also said that he is not passing his hearing test, although that is somewhat inconclusive because of his age- not all babies will respond to sound in a consistent way at this age.  After talking to Charles about it, we are looking into having tubes put in his ears to drain the fluid and improve his hearing.  It may be a little on the proactive side, since our Pediatrician thinks the fluid is probably just a result of the congestion he has had on and off over the last couple of months. However, I don't think I want to wait and see.  The two things that are delayed across the board with children who have Down syndrome are gross motor skills, due to low muscle tone, and speech delays.  If Elijah is going to have speech delays, I want to do what I can to minimize the obstacles he'll have to be able to speak well.  Hearing is obviously important in the area of speech.  So, we have a referral to an ENT to get her opinion and expertise on the matter, and we'll see where to go from there. 


(Elijah and his Uncle Bill)

We also had our monthly well baby check up.  Elijah has gained TWO POUNDS since our last visit (about 6 weeks ago, due to some rescheduling on my part)!!! Woo hoo!  Finally gaining a little weight!  He is weighing in at a whopping 15 lbs. 8 oz. and he even climbed back up on the growth chart by a little bit. He is now in the, very impressive, 4th percentile! LOL! But, hey- after all of the food fattening and force feeding I've been doing, we'll take it!!

Lastly to report in Elijah land, we had assessments done by our Physical Therapist and Child Development Services people last week.  According to the PT, Elijah is at 6 months of age for gross motor skill development. According to the CDS, he is at 5-6 months for gross motor and fine motor skills, but at his actual age for social/emotional skills.  None of it is a surprise.   I don't really have feelings one way or the other about it.  I expected and am aware of his gross and fine motor skill delays, but see him continually making progress.  As for his social/emotional development, he is a joy- an interactive, sweet, acknowledging baby who loves people and loves to smile. Personally, I couldn't ask for more.



I got a call this week from a very close friend.  She told me that a friend of hers from work had gotten results from her recent prenatal blood test and ultrasound that were showing a 2 out of 3 chance that her baby has Down syndrome.  The ultrasound was also showing some concern for the baby's heart and how it was affecting the fetus.  Obviously her co-worker is concerned, and my friend wondered if I would be willing to talk to her.  Of course I wouldn't mind talking to her friend!  It wasn't really that long ago that I received similar results and was completely FREAKING out!! I know that when I received those initial diagnostic results, I had people offer for me to talk to some friends of theirs.  I had the best of intentions, thought that I would, but never actually made the calls.  I think part of me didn't want to validate the blood tests- part of me didn't want to yet start coping with the what-if-this-is-really-true part.  At that time, I needed to believe the tests were wrong.  I hope my friend's friend calls me.  I know what it's like when the only information you have is coming from the medical community and Google.  It is terrifying.  It is isolating.  I have never felt so alone in my life. I didn't actually reach out to anyone until Elijah's diagnosis was confirmed by Amniocentesis.  However, when I did, I realized that the most accurate information was not at all the information that came from the medical community, and certainly not from Google.  The most accurate information was from the families who lived it everyday. The ones whose doctors told them to terminate, because their baby might never walk, talk, or communicate.  The ones who, instead, watched their lives light up by a baby who fought all of the odds. Some did deal with medical complications, but they did just that: deal with them. All said they wouldn't change a thing.  I agree.  If I had a time machine that would take me back in time and change the fact that Elijah wouldn't have Ds, I don't think I would do it. Because then he wouldn't be Elijah. My world was blown up- initially in the most scary way- but then I was embraced by a community of people that I never would have met and been accepted by.  When I hear myself say this and I see it in my writing, I know that it would be hard to believe by the people who are in that scary place of limbo, not knowing if their baby will be born with a chromosomal disorder...or even something worse.  I can't stop thinking about this friend's friend.  I know how alone and scared she must be feeling right now.  If I had the chance, I would tell her to take the leap of faith. To not live too closely to the words of her doctors. That in early pregnancy, many things are malleable and the fears that exist medically today, may disappear tomorrow. I would tell her that I do not regret having a baby boy with Down syndrome- not even a little, teeny, tiny bit. I would tell her that I have two boys- one completely "typical" by the world's standards and one that is "different", but they are both special, unique, and a light to me in their own ways.  Lastly, I would tell her to be kind to herself- she didn't cause this, she isn't to blame and though it's so much easier to say that to accept: everything will work out, one way or another, it will be okay.  This much I know is true.

At the start of my day, I got a chance to witness the power of the sibling relationship.  When I arrived at Christian's preschool for snack and my ballet talk, I arrived during the ever important task of the "Share Bag".  Each child takes a turn taking home the share bag, then they choose an item from home to bring back and share with the class. With the help of a parent, they fill out 3 "clue questions", so that the class can try to guess what is in the share bag.  Today it was Hunter's turn.  Hunter is almost non-verbal.  I have literally never heard him say a single word, but he is the cutest little guy in that class and I always fight the urge to just grab and hug him.  He proudly displayed his share bag item, at the appropriate time.  I could see that it was a CD, but it was not until one of the little (4 year old) girls yelled out, "It's Justin Bieber!", did it all make sense.  Hunter is the youngest in his family. And the only boy. Yep. The teacher asked, "Do you know that song, "Baby, baby"? (and kind of sung the tune as she named the song)" and the same girl shouted, "No- that's not how it goes.  It goes..." (and proceeded to sing the lyrics perfectly for about a phrase.) It was hilarious and Hunter had an ear to ear grin.  It got me thinking about the power of sibling relationships.  The bonds that are formed can't be fully explained. I have a suspicion that one of Hunter's older sister's suggested the Justin Bieber share bag item, or as a result of having to listen to his sisters' choice in music, he is also a closet fan. Either way, it was his sibling relationships that brought a smile to my heart.  My own sister and I recently had a difficult communication patch, and it is always so painful when it happens (though, frankly, in 39 years I can count on one hand the number of times that we have even looked at each other cross-eyed). She mentioned to me that she thought that when I was hurt or upset that I came down harder on her than others.  I really don't think that this is true.  But, if it were true, I could understand why: We've lived longer, loved deeper and shared more than anyone else on earth.  It kinda makes sense to me that we could push each others buttons the hardest too.  Even though I'm not 100% comfortable where things are with her right now, she is my sister, and I love her so deeply that it hurts. So, when I watch the budding relationship that I see between my two boys, my heart literally hurts with joy.  The adoring way my boys look at each other, and how Christian looks out for Elijah and wants to include him in everything is beyond description. So, instead I'll just share a couple of photos.  The best part is that these were snapped in the moment- no posing, no staging, this was real (Well, based on my photography skills, that may be obvious...)



My boys love each other.

This much I know is true.