Missing the Music

I wanted to take a few minutes and write about a very sweet, courageous, and adorable little guy in London's class that recently got his angel wings...

I hadn't known Andy all that long- he was a bit younger than London so he started school after she had been going for a while. I'll never forget the first time I met Andy or his mom, Sarah. London's class was going on a field trip to a little pond to feed the ducks and have a picnic. As I always try to do, I met the bus at the pond and waited to see my sweet little London come down on that wheelchair lift so we could enjoy the beautiful day together. As I was standing there watching the kids come off the bus, another mom I didn't know came over and introduced herself. She was Sarah, and she was Andy's mom. I hadn't yet met Andy, and didn't even know another student had joined the class. I remember thinking to myself, 'I wish I was more like Sarah, and could just go introduce myself like that'...

The field trip was nice- the weather was nice, the geese didn't attack, and the picnic was relaxing. The kids were all very content. For me, it was just another day; London's field trip, grocery shopping, a run to the post office, and back home in time to get London off the bus. For the kids it was a great new adventure; feeding ducks, hearing birds, feeling the breeze... I remember smiling when Andy smiled- simply because it was infectious. I wish, rather than being so caught up in what my day held, that I had slowed down a little and enjoyed the moment. I wish that I had been able to get to know Andy better.

When this school year began, Andy and London started out riding the same bus. Andy would already be on the bus when London was picked up, and every day when I'd get on to help strap her wheelchair down, I was greeted by Andy. He would be smiling, playing with his little musical toy. Every day, I loved the sound of that music. I loved seeing Andy be so engaged with that toy, and enjoying such a simple thing.

Andy's service was beautiful- full of love and happy memories. I miss his music, and I look forward to the day where I see Andy again.

Fly high, little man!

A Bit of Catching Up...

I find myself with a little time on my hands at the moment. I thought it would be a good opportunity to tackle this blog update I've been putting off. Thomas has been traveling lately and is gone again, while both my kids fell asleep a bit, er, a LOT early tonight. So I logged on and what do you know, I had page views yesterday! Here I was thinking that NO ONE looked at this unless I shared the newest post on Facebook or something and yet I find that indeed people have checked it out. So I apologize that there hasn't been anything new recently.
I honestly don't know why I can't seem to get a handle on the consistent blogging thing, but I'm assuming it's the same reason I can't to get a handle on consistent laundry washing... But here goes...

The end of 2012 seemed to be a little chaotic. London began coughing a lot while drinking from her sippy cup in June and after failing a swallow study (study showed slight aspiration with each swallow, and her throat muscles are just not stripping everything from her esophagus) it was decided, rather hastily, to insert an NG tube. An NG tube is a tube inserted through the nose, into the stomach, for feeding. She had this for a while and in September she went in for surgery and a G tube was put in (the tube goes directly into her stomach). She did so well during the surgery and even *finally* broke 30 pounds!

Sometime in the midst of this I signed up to become a Mary Kay Beauty Consultant... just thought I'd add to the craziness of life. Why not, right??  I felt like I've slowly lost myself over the past several years and I loved the idea of having a reason to wear makeup and possible dress up.

Anyway, back to London, because I hope she is the reason you all are reading this...
In an effort to (last ditch effort, really) to get a grip on her stinkin' seizures, we had been talking about putting a VNS implant in... So the preparations for that went well, the insurance approved it, and she was put on the schedule for December (thank goodness we got in by the new year, those deductible would have killed us!). It's still strange to think that London now has a neurosurgeon... But things went fairly well and the implant is in now. I've noticed a slight improvement and I'm hoping that once we crank that baby up a bit more that we'll see greater results. She's not seizure free, and maybe never will be, but she's happy and alert for the most part, so we're excited about that.

I guess putting this all in writing makes it seem so much less... well, just so much less, but I feel like my sweet London hasn't had a break from tests, procedures, surgeries, and seizures for 6 months.

As far as our bank account for London's home goes, I think we have somewhere around $7000. I can't even begin to express our gratitude for everyone who has helped us out on this journey so far! We are slowly working on fixing up and finishing our current house so hopefully we can sell it for a good profit when the time comes. I mentioned above that London finally broke 30 pounds, which really isn't a lot until you have to carry her around everywhere... On one hand I'm so happy to see her gain those few extra pounds, but on the other hand, my back isn't too pleased about it. haha!

At the moment, I don't have any fundraisers planned for 2013 (still trying to get a handle on that laundry??) but I'll take any ideas that anyone might have! Thank you all for reading about London and our journey. I'll try to keep a bit more current on the blog.

Love from me and London! 

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

Yardsale Time!!

Hey folks!
We FINALLY have a date set for the yardsale! It will be held
Friday and Saturday the 27th and 28th of July
8am to around 1 or 2pm

It will be here at our home, in Roy. If you live in the area, come on out and see what there is to see!

We have SO MUCH STUFF! Our 3-car garage is FULL!!

Clothing will be fill-a-bag-for-a-buck!! We'll have plastic shopping bags and you can stuff clothes in there for just ONE DOLLAR! This includes womens, mens, kids, toddlers, and baby clothes! Don't just brush it off because of the low price- there's actually a LOT of great items!! (I had my eye on several things as I went through it all yesterday!)

There are also a lot of books and games! (Had my eye on a bunch of the books, too!)

We've got home decor, holiday stuff, electronics, furniture, toys, sporting stuff, crafting and sewing stuff, SHOES ($1 per pair!), and SO much more!!

I will also have a table or two of my random crafts and we'll have London's Lemonade stand up so you can have a yummy treat while shopping! Come out and see what London does when life gives her lemons! :)

I hope to see ya all there! Thanks so much for your donations! We couldn't have done this without the help of so many people giving us the things they no longer use. Remember, one man's junk is another man's treasure! And we have a LOT of treasure!!

Love always,
Danielle and London

Some Late Night Reflection

As I sit here, at nearly midnight, with Kannon while he watches Curious 'Borge' (curse those late naps!!), I am thinking a lot about one particular reason I started this blog. It's not all about fundraising... I've said before that this blog is a place where I want to be honest about what it's like being a parent of a child with severe disabilities.

So here's a little honesty:

I've had a hard time the past month or two trying to deal with London's constant fussing and whining (ok, so it's been the last 4 1/2 years, but especially the last month or two). All she wants is to be held all day, every day, and I can't ever get anything else done. It seems as though the second I put her down, she starts with the whining. Not only is it frustrating to not be able to even do a load of laundry or reload the dishwasher without having to stop and calm her down, but just listening to the whining itself, regardless of if I'm doing anything, is completely draining. I have the shortest fuse ever, and I get frustrated so easily- it's something I'm continually trying to overcome- and sometimes I feel like I just can't do it anymore... I feel inadequate because I can't 'fix' what's wrong with her, I feel lazy because I can't get all the household work done, I feel bad because I rarely get around to making an actual dinner and we end up eating unhealthy food, and most of all, I feel like I'm not cut out for raising a child like London. I feel like she deserves someone so much better than I can be.

During a camping trip with my parents and some of their friends last week, one of the husbands in the group called me over, patted the bench next to him, and said he needed to tell me something. I figured he was drunk, and honestly, I was waiting for him to tell me some lame joke or something haha! Instead, I was surprised when he asked me, while looking at my mom holding London across from us, if I ever asked, "Why me?". I told him that I had never asked "Why ME?" but rather, that I asked, "Why HER?". Why London? Why does she have to bear this burden? An innocent little potato bug like her??? He offered some words of comfort... he reminded me that she's a blessing to me, and I to her. I can agree with the former; the latter, however, is not as easy to convince myself of, especially lately.

I'm not a religious person, but I do consider myself to be spiritual on many levels. I may not believe in what you believe, and I don't attend church, but I'm strong in my faith; a faith that I have acquired through many things, but through London most of all. I've always told myself, in regards to London, that God doesn't make mistakes; that London was sent to me just the way she is because that's just how it was supposed to happen. Maybe there's a reason, maybe not. But it wasn't a mistake on God's part. Having that belief, however, doesn't suddenly take away my stress or desperation. I can only use it as a reminder that God won't just give me patience, he'll give me the OPPORTUNITY to be patient.

I was meandering around online today and came across one of my favorite quotes from one of my favorite guilty pleasure movies, Rocky... 

Life truly will knock you down; nobody can escape that fact. I just sometimes feel like London got suckerpunched by life. And sometimes it DOES bring me down and I don't want to get back up. Sometimes I want to lay in the fetal position and pour my frustrations out through my tears. Can I really handle this role I've been cast into?

Yes. Yes I can. Eventually, I will get up. I will fight on.

But before I do, can I please just lay here for a few minutes, in the fetal position, crying??

It's hard for me to admit all of this, especially to those I'm close to, as odd as that sounds. But my hope is that by talking openly about feelings like this will enlighten people who have no connection to a person with special needs, and maybe it will empower those who do have those connections, knowing that feelings like this are nothing to be ashamed of. I've been ashamed to admit weakness when it comes to caring for London for the last 4 1/2 years and I'm doing my best to overcome that...

Lots of love, readers.
Danielle

Quick update, better one to come...

I had a fun blog update in the works and of course I'm so technology incompetent that I lost the whole thing so I just wanted to do a quick update for now...

We have nearly $4000 in the bank for London's home!! I am incredibly thankful for all the love, support, kind words, donations, and word-of-mouth that have helped us get to this point.

Our yardsale is still in the works- we've got a TON of stuff for it and right now I'm trying to get it a bit organized and also plan a few other things to have going on during the yardsale. I want to do a bake sale, lemonade stand, and a sort of craft booth... It'll be super, so come see what there is to see! :)

Much love to you and yours!
Hugs, Danielle and London