Thursday, August 09, 2012

Shared Heartbreak

There are so many people I look up to... my mom, my sister, London's teacher and classroom aides to name a few. I especially look up to other moms of children with special needs. I always feel like I am scrambling around for help, answers, prescription refills, doctor appointments, and sanity- but I swear when I look at other SN Moms (special needs moms), they seem to just always have it all together. Maybe this is because most SN Moms I know have kids who are a bit older than London; they're more experienced. Maybe it's because they don't stress out the same way I do... Or maybe, like me, they are the duck who looks calm and collected above the surface and paddles like hell below the surface.

***Insert the funny photo that I can't seem to find here***

Anyway, I have a few friends whose SN kids have passed on. One friend in particular is someone who I never met face to face until the day of her sons funeral. I've never been a crier at funerals, but then again, I had never been to a funeral like this. So full of love. I've never seen so many people come together to give condolences. Of course it was heartbreaking; the loss of any child, for whatever reason, is a hard pill to swallow. Of course there were tears (mine included, I was a mess!)... but more than all that, there was a love for this sweet boy that was almost tangible. I think about this particular boy nearly everyday- I never had the privilege of knowing him personally, but that doesn't mean his light didn't touch my life. My heart broke then, and breaks now, for the loss of his presence in this world.

Another SN child that I never met, but who profoundly affected me passed away a few weeks ago...
I have had the same dental hygienist my whole life. She's always been so kind, so caring, and so dang sweet! She's one of those people that, even though you only see every 6 months, always makes you feel like you just spoke the other day. She asks about your life and actually cares. I found out a handful of years ago that her youngest daughter was born with severe disabilities. We made a special connection through our children. Her daughter was born the year before me, London was just diagnosed, but nonetheless, the connection was made. Over the years since I found out, we talked about our kids every time I went in for a cleaning. She encouraged me in my struggles with London and was always so kind to share her experiences with her daughter. I so looked up to her- she had been doing for my whole life what I was just barely learning to do: caring for someone with severe disabilities, navigating insurance and medical systems that are just not on our side, learning things she never thought she would need to learn, and silently trying to put the pieces of a broken heart back together.

I took Kannon in for his cleaning the other day and because it's summer, I had London with us. My dental hygienist touched London's face as we were leaving and said, "I so needed to see you today, London". Then she looked up at me and told me that her daughter passes away a few weeks back. I didn't know what to say, after all, what COULD I say? What could I possibly do in that moment to ease her pain?

Just like when any SN kiddo passes away, my heart broke. Even though that child is no longer suffering, it's still a tremendous loss.

My heart goes out to Jennifer and her family...

Love, me

Yardsale Total!

As always, time just seems to get away from me every time I have something I want to blog... but here's a quick little update:

Our yardsale went great! It was way too hot and we didn't make the goal I had set but we sure came close! I had set a goal of $1500 and we ended up being just $155 short of that! WOWZA! I am considering that quite a success! I can't thank those who donated, helped out, or shopped enough for the support!! THANK YOU!!

Some of my Facebook friends already know this but London recently had to get a feeding tube placed due to silent aspiration discovered during a swallow study. I'm handling it all fine... after all, a mom just does what she needs to do. But let me explain some of my heartache over this latest change...

When London was diagnosed, we were told that because her entire brain was not affected by her condition, she could very well live as long as any 'normal' person. We were told that with her condition, breathing and eating (swallowing) problems were the main contributing factors to a very short life. So you can imagine my gratitude to the Big Guy upstairs when London came out screaming, breathing, and eating on her own. Of course, at the time of her birth, I took all that for granted- I didn't have the perspective I have now, after diagnosis.

As life went on and London grew but didn't meet so many other milestones, I clung to the fact that at least she could breathe and eat on her own. Knowing this was a lifeline to some sort of peace.

When the speech therapist conducting the swallow study showed me what was happening when she drank liquids (and even sometimes when she ate) and told me that she suggested a nasal-gastric feeding tube be placed until we could discuss a permanent G tube, I felt a little like someone pulled the rug out from under my feet. London? Needs a feeding tube???

She has never had pneumonia, never stopped breathing... the only reason the swallow study was even done is because she started sputtering and coughing a bit when she'd drink from her sippy cup. I went from going in for an hour-long appointment, to being taken to the Rush Treatment Unit and watching 34 centimeters of rubber tubing being shoved into my daughters tiny button nose.

How could I NOT feel a bit sad??

I know that a feeding tube is not the end of the world. I know we are still so very lucky. I know that feeding tubes are manageable. I know that there are far worse things that could happen. I've heard it all and I know... doesn't change the fact my lifeline to that certain bit of peace has been snipped. Don't get me wrong, I still have a huge sense of peace in other areas of London's life, but this is one that I especially liked.
Don't worry about how nasty I look in this photo... We came from the hospital (6 hours there, just me, London and crazy Kannon- I was SO tired!) and we went right to the rodeo. London even still has her hospital 'anklet' on.

Life goes on though, right? Whatever London has to face, she'll face with me by her side.
Thank you all for your support and well-wishes and offerings of help. I truly do appreciate it!

Also, just want to throw this out there- while at the rodeo, I met an amazing woman named Amy... As I was sitting there with London (Thomas and Kannon had wandered off to see what they could see) I felt a hand on my back and someone asked me "How are you doing?". I turned and here is this woman sitting by me and all I can think is 'holy cow I don't recognize her and she knows me!'... She said that she knew I didn't know her, but that she wanted to come say hello... she told me that they had lost her young daughter who had also had some disabilities. We talked for a while about London's tube and how London reminded her so much of her sweet angel. It was incredibly reassuring to me to know that in a crowd of strangers, I was not alone. After our day at the hospital, getting London's tube, it was nice to just have a connection to someone. I always marvel at how us Special Needs Moms can come together like nobody's business. I feel so much more comfortable approaching moms whose children have special needs than a mother who doesn't know what it's like to go through what we go through. I want to thank Amy for coming over to us- we needed it!

Big squeezes!
Me and L