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

Monday, July 16, 2012

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

Tuesday, July 10, 2012

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

Monday, July 09, 2012

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

Thursday, April 26, 2012

Some Catching Up...

So it's been a while since I last posted anything and I'd like to say I have some great excuse, but honestly, I've sort of been avoiding it... when there's no good news to post, why post at all?

But that's changed!

 But before I get to the good news, let me just update you all (nine of you now!) on what's been going on with London:

She had been accepted to Shriner's Hospital and we were stoked for our appointment! I was anxious to find out what the doctors there thought about her CP (cerebral palsy) and what they suggested in the way of braces that may help her bones and muscles grow properly. The appointment went fine, pretty run-of-the-mill as far as doctor's appointments go (except for the fact that there was NO waiting and Xrays were done on the spot rather than 3 months out! YAY for that!!)...

So they wanted to get London into some ankle braces and a soft back brace to wear while she is using the stander at school and occasionally here at home. *Let me insert this: a stander is one of the pieces of equipment that I oh-so-desperately want once we can have the space and $$ for it! It could do SO much for London!*

So I was excited when our appointment came the following week to have her casted for the molds to make her braces... that is, until we actually got there. Once they started the whole process, my heart just sort of sank. There I was, sitting on a hard exam room table, holding London on my lap, and restraining her while a man put casting material on her skinny little non-functional legs.

 We should have been picking out ballet shoes, not cold, hard plastic braces.

And if I thought that was a moment of heartbreak, what came next was something even more gut-wrenching. To cast for the back brace, London had to be laid on a three-inch-wide strap, balanced and restrained at the legs, arms, and head. I was in charge of holding her head still and her arms up by her ears. London can stretch out like this on her own, but BEING stretched out when she doesn't want to be can cause a serious tantrum. Add that to the fact that she's being balanced on a narrow piece of belting, and she was in complete distress. She began to calm down as I spoke to her and the warm casting material was being wrapped around her torso but something, somewhere (never did figure out what), hurt her BAD and she had a complete meltdown. I also almost had a meltdown! Halfway through wrapping her up, she's writhing in pain and screaming bloody murder, and my job is still to restrain her until the cast is hard enough to cut off and use for the mold. Those minutes were agonizing for us both.

So along with the traumatic casting incident, the news we got at her last neurologist appointment wasn't exactly what I wanted to hear... since medications haven't been working, I was all set to try a VNS in an attempt to further control her seizures (as if we have any control at all...)

Well, the VNS is more of something they go to after they rule out surgery. Meaning brain surgery. BRAIN. SURGERY. They want to see if any parts of her brain that are having the seizures could safely and without detrimental side effects be REMOVED to stop that particular type of seizure. Removed. Gray matter, gone.

So an extended EEG is going to be set up (they'll come to our home, connect the electrodes to her head and she'll wear them from 3 days to 2 weeks, long enough to hopefully capture all the different seizures she's having) and from there we'll discuss possible treatments. Even though we haven't even set up the EEG, I can't help but start weighing my potential options.

Well, now that that's out, I'll get to the GOOD NEWS!

The Scentsy party put on to benefit London was a great success! I can't thank Krista enough for donating her profits from sales to A Home For London! She was able to donate $300 for our fund! I'd say that's pretty amazing!
Thanks again to Krista and to everyone who ordered! It's appreciated more than you could ever know!!

Another little tidbit of happy news is this: we may have a killer deal on electrical work once we get to building our home!! Friends who are willing to talk to their connections (in this case, her dad) are surely incredible friends, indeed!!

So, we have a roof, possibly a killer deal on electrical work and supplies, and about $4000 in the bank for out home.

We just need to keep up the momentum on our fundraising efforts.... so please pass around the blog. There's also a page on Facebook we'd love for you to check out!

Until next time, love from me and London!

Thursday, April 05, 2012

Mary Kay for London

Here's the latest! :)

A dear friend of mine, whom I've known so long I can't remember NOT knowing her, has so generously offered to help us out through selling Mary Kay. She is going to donate 100% of her profit from all specific sales NOW THROUGH JULY to A Home For London!
Need to put your next Mary Kay order in? We'd LOVE for you to go through Heather this time!

Here's what ya need to do to ensure that a donation is made for London...

1. Go HERE

2. Shop til ya drop!

3. BE SURE to write 'A Home For London' in the COMMENTS box next to where it asks for the payment method for your order. (You may have to register to complete your order, just FYI)

4. Sit back, relax and wait for your order to arrive! :)

If you can't order online, you can order through Heather by calling or texting her @ 435-695-3700 and let her know that you're ordering for this cause.

Can't tell you all enough how much we appreciate any and all support you give us!

Love and thanks from me and London!