Liam at 10 Months

There is much new in the world of Liam this month, although, don’t hold your breath for crawling, because it still hasn’t happened.

But… Liam is:

• Dancing whenever he hears music, including my singing.
• Sings.
• Clapping his hands.
• Waving and screaming “Hiiiiiiii!!!!!!” as if it were not a greeting, but a warning.
• Pivoting on his tummy 360 degrees.
• Tummy crawling backwards, not forwards.
• Scoots on his bottom to get around.
• Can get from tummy to sitting by rolling himself up (in the splits).
• Eats many types of table foods, including fruits, some cooked veggies, pasta, and meats.  His new favorite food is barbecue pork or chicken (just like his siblings).  He is not sensitive to spicy food, and prefers flavorful foods to his bland baby food, which he has decided he hates unless I salt it (I know this isn’t ideal, but hey, it’s still nutritious).
• Has been evaluated by the Early Intervention Program and qualifies based on his gross motor delay (his only area of delay).  We plan to have one or two physical therapy sessions, so I can learn some strengthening techniques to increase the tone in his legs.
• Adopting a few misbehaviors, including pinching, slapping and biting when he is frustrated, is separated from something he wants, or is being bothered by his big bro.  It’s still kind of cute, but I don’t know for how much longer…
• Says mama and dada.
• Makes his opinions known.  He is loud when he wants to be, and super adorably bashful at other times.
• Loves sticking out his tongue at me.
• Is learning to play independently for a few minutes at a time and enjoys playing with his siblings (especially Bella right now).

I love watching him grow into himself.  I just can’t help but be in love with him.  Little stinker knows it too ;).

Oh, and Liam’s Bumbo ad made it to Gilt!

My Worst Fear

All week long, my heart has been breaking for a mom named Kate Leong, with a son named Gavin, whose blog I have been reading for some time.

Gavin has always reminded me of my Ari.  Gavin and Ari are similar in extraordinary ways, not the least of which was their age, their mixed Asian heritage, their diagnoses of premature birth, enlarged ventricles and Cerebral Palsy; their twin status (Gavin lost his twin in utero), their history of terrifying febrile seizures, their likes and dislikes, abilities and struggles, and the astounding way in which they manage to light up a room and capture the hearts of others wherever they go.  I have always felt that Kate and I were somehow linked, and this is why I followed her blog and read her story.  I do not know her personally, beyond this. 

Something that is challenging to explain to people who aren’t a part of the special needs community is that as many amazing friends as I am so blessed to have, there is always a piece of my life that I feel is not completely understood. I long for the sense of community and likeness and complete freedom from judgment or comparison that I feel when I know that there’s another mom out there who is walking my road.  This understanding I receive when I visit the world of Kate Leong.  She has given me a sense of companionship and sisterhood that is hard to come by, much less in a complete stranger who lives on the opposite side of the country. 

Well, one week ago, little Gavin died.  Without going into the details, suffice it to say that Gavin suffered a seizure, went into cardiac arrest, and never recovered. I can’t tell you how deeply affected I am by this occurrence, and I don’t necessarily even want to.  That wasn’t the intent of this post.  But last night, Kate did it again… she wrote my heart out.  What she wrote was something maybe only two people know about me.  When I read it aloud to Jake, barely able to talk as I was choking on the knot in my throat and trying hopelessly to fight back the tears that were already streaming down my neck, I felt my thoughts and emotions welling inside; but I said nothing besides reading what she had written.  When I finished, Jake said, “That sounds like you,” and he was right.

My Worst Fear – Kate Leong

I just want you to know that "something happening" to Gavin was always my worst fear. I feared that he'd get hurt. I feared that he'd be overlooked. I feared that I wasn't getting his teeth brushed well enough when he'd fight me. I feared that someone would say no when I asked for anything to make Gavin's life easier (luckily I rarely heard no). I feared that his fragile left eye that survived the severe corneal abrasion would tear again. I feared that he'd choke - or aspirate on bath water when he insisted on putting his face in the water. I feared a repeat febrile seizure after last year's seizure that Ed and I both described as the scariest moment of our lives. I feared that we'd die without us having something in place for him - someone to take care of him.

I took some criticism along the way. I was a "helicopter mom." "Overprotective." "Dramatic."
I'm not gonna lie - I'd like to punch those people in the arm right now.

Today I got through Gavin's first three years and lovingly chose photos to display at the services. My sisters helped assemble them on display boards. I struggled through his memory box pulling out tiny hospital bracelets and special keepsakes. Miss Sara took Brian to my wonderful friend Patti's house for a playdate with her twins. A co-worker of Ed's brought dinner. And then Miss Sara and I went to the mall to find me something blue to wear for Gavin's funeral. I was sleepwalking.

Now I'm home - in bed - listening to the pouring rain pound my window. It's like the Heavens are giving me permission to grieve.
And so I do.

"Something happening" to Gavin was always my worst fear.
But I never imagined he'd suddenly die.

For the last five and a half years my identity has been wrapped up in him... in protecting him... in fighting for him... in my fears for his safety and well being and his future. But in the end, I was helpless and useless. There were no letters to write, appeals to begin, strings to pull. I couldn't help him. And he died. My very worst fear.

Tonight I feel like it will rain forever.

My heart reaches out to the Leong family, and especially to Gavin’s mommy Kate, as they attempt to grieve and cope with the worst thing any mom could ever be asked to endure.  I marvel at how she’s getting through the day.  I know that I could never, ever handle what she is handling with even a fraction of the grace.  I am certain that I would shatter into a million jagged pieces.  I hope she somehow finds comfort and peace and healing, but I also pray that she gives herself continued permission to grieve. 

“Grief is not a sign of weakness… it is the price of love.” – author unknown

Bubbles

We play outside almost every day during this perfect time of year.  I don’t always bring my camera, but when I do, this is what I get.  We can be pretty silly sometimes.

 

Our Decision

A few months ago, I wrote about a surgery that was recommended for Ariana.  I’m going to just cut to the chase, and let you know that a decision was made to go through with the surgery this summer.  This surgery, called the Selective Dorsal Rhizotomy, is something that we have been both working hard to get approved and something that we’ve been dreading at the same time.  We still feel the same mixed emotions about it, but we are at peace with our decision.  We believe, after speaking with parents of children who have gotten the surgery and with grown individuals who have received the surgery themselves, that we are making the best long-term decision for Ari.  We hope that her life will be more comfortable and manageable for her as a result of this surgery.  We even have some faint hope that she may actually make gains in her walking as a result of it.  Hey, a mom can dream. 

Ariana’s surgery is scheduled for 7 AM Arizona time on Monday, June 3.  We are doing an all-call for prayers leading up to, during, and after the surgery.  We pray that everything goes beautifully, that she does not suffer, that she does not experience complications, and that she is able to realize noticeable benefits as soon as possible.  We also pray that we will have the strength to be super parents, super caregivers, super nurses, super spouses, and basically super-human during this time.

Ariana is our angel; always has been and always will be.  We ask that you keep her in your hearts and on your minds at this upcoming time of trial in her life.  Thank you.

Good Little Citizens

At school, the kids are taught a character education program called Character Counts.  There are six pillars of character that are featured throughout the year.  Every time they feature one of the pillars, they hold an assembly and pep rally at the week’s end.  Each teacher gets to nominate one student from the class that they feel best demonstrates this character trait.  The last of the six pillars was Citizenship, and I got notes home in both of my twins’ backpacks telling me that my little one was to be honored in the assembly this time.

This made my ever-lovin’ mama heart so happy to hear.  I would’ve been thrilled if even one of my twins had been selected, but the fact that both were (by shear coincidence I’m told) made it that much better.  This simply said to me Gabe and Ari are happy in school, and it shows.  What could possibly sound sweeter to a mom of two kindergarteners?

Ari was so happy to see her Daddy and Nana came too.

Gabe spotted me for the first time :).

Ari was ecstatic throughout most of the assembly.  Of course, she couldn’t have been happier about the music and dancing part.  Every once in a while, she would get overstimulated and start to pout, but she usually just snapped right back (note:  we later found out that she did not eat her lunch that day… only her dessert; which it’s safe to say is accountable for the mood swings).

Gabe was so proud.  I love this bashful smile.  Ari felt proud for maybe a minute.  Then she realized that the whole school was staring right back at her, and her emotions (and lack of sustenance) got the best of her.

I love witnessing the people they are becoming.  I am so often reminded of what an honor it is to be a small part of who they will end up being.  This ceremony was just one of those times.