So it's July 29th 2012 finally. So......happy Duchenneversary to us. We've officially survived the first year of our life with Duchenne. The knowledge of it, anyway - I mean he's had it his whole life, we just didn't know about it til July 29th 2011. I feel like we accomplished something, getting through an entire year. Like the introductory period or the probie year is over. I dunno. I mean we didn't really - if anything, we're in the easy section of DMD life. Bleh. Maybe the shock is supposed to be wearing off now that it's been an enitre year since that phone call came, ruining dinner - ruining our weekend - changing our life forever. Like it's time to get over it already. This is it, this is your life, brush it off, you've had a whole year to get used to the idea that you don't get to be a "normal" family with "normal" dreams and expectations of your life. I never wanted to be a soccer mom anyway, right? I just never thought this was going to be my way out of it. I thought maybe baseball.
I was talking to Tanya a few days ago about wanting the first year to hurry up and fly by and how everything you do during the year is a "first" - first Christmas with Duchenne/without Peyton (in her case), first birthday with Duchenne/without Peyton, etc - and I thought, "crud.....the "first" year is going to happen over and over again". First year in a wheel chair, first year he can't be unattended at night, first year with a trach, first year non-ambulatory, and eventually the first year without Little. Even some silly firsts, like first year we get to start parking up front in the handicapped spots. This disease really really really really really really really really stinks. Like donkey farts.
Mostly, I'm doing ok, really I am. I know it doesn't sound like it today, but I think that's just because I'm tired and I have a headache. Probably not in the best frame to be blogging, honestly, but when has that ever stopped me? Ha. I mean, there are times when I struggle. Really struggle. My mom, my friends Tanya and Liz, and my Gran probably have the best idea of what this past year has been like and done to me. I don't have much time to myself due to Little's schedule and the amount of time we seem to spend in waiting rooms and pharmacies thanks to both Little's appointments and my migraines and chronic headaches and the accompanying doctors' appointments. Mister is owned by the government so even when he is home (which is usually when Little is asleep - ok when both of us are already asleep) I can't really take a break because he can be called back in to work at any moment.....and usually is.
In fact, I am so used to having Little with me every single second that a few weeks ago when he threw a tantrum during communion and I had to take him to the nursery at church, I actually started to cry when I left him in there. I don't know if it was because I felt kind of lost without him under my feet or because I felt so relieved to get 20 minutes where I didn't have to be concerned about him or if it was because I felt a rush of guilt because I felt relieved that I was a getting a few minutes away from him?! This disease never lets me forget that one day it will kill my child, so knowing that, makes it so incredibly difficult to be away from him for anything that is not necessary. By that, I mean the other day I had an MRI (migraines) and I had no problem leaving him with my friend while I went and did that. 15 minutes in a noisy coffin like tube? Yes, please! It was like a vacation. So I know that I need a break every now and then to stay sane - to recharge. I know that I need time for myself to take care of my psyche, yet I feel selfish doing so. An MRI to see if I have a brain tumor or a blood clot (I don't, btw) is not the same as dumping my child off on someone else to get a pedicure. I know that one day that dreaded day will come where I will give anything - anything - to have him back in my arms again so how can I walk away from him now for something so selfish as an hour to fold laundry just once instead of 6 times since he insists on unfolding it faster than I can fold it and get it out of his reach just racks me with too much guilt to go through with it.
Now it would be different if I had family here. I believe children should spend time with their relatives. If my parents were here then yes, I could do some of those alone type things while Little hangs out with Grandma and not feel as terrible about it. That is not the same thing as leaving him with a sitter. But that's not an option, as Grandma, Aunt Christie, and Mammaw Charlotte are all almost 6 hours away. I wish so badly that Fort Campbell was in Little Rock. But it is not, and neither is any Army Base. No, guys, Camp Robinson doesn't count. That is a National Guard training camp, not an actual active duty base. I want to move back to Arkansas with every fiber of my being.
I think an hour at the gym could be a way to help out once I get my headache situation under control (if one of these flippin doctors would take me seriously and send me to an ENT so they can figure out how to empty my frontal sinus cavities). Like at the Hopkinsville YMCA or Clarksville Athletic Club. I'd be alone - zoned out with my ipod, getting exercise and endorphines while Little plays with other tots in the same building - as in I can go check on him if I start to feel that instinct and maybe I won't feel as guilty since I'm not really away from him - but............I just flat out can't afford it. Sound of balloon deflating. I just really sound pathetic today, huh? Not the usual "I can do this!" attitude. Well, we all have those days, I'm no different. Jacob, I'm going to need you to open a 10 Fitness here and add in a child care facility, mmmmmkay?
There has been so much to process over this year, so much to get to used to, that I often get lost in it. I stick my head out every now and then and realize that I just haven't been the friend/wife/daughter/neighbor that I should have been. Just the other day, consumed in yet another day of headache pain on the couch in the ice helmet (a better explanation with pictures in a later post) I glanced at my virtual game of scrabble on my phone and got irritated that my dad hadn't taken his turn in about 5 hours. Never occurred to me that it was because he was in the middle of back surgery. It wasn't until he was on his way home from the hospital that I noticed a post on facebook from my sister that that is what he had been doing all day. Oopsie. I've missed weddings and births and family reunions and other get togethers because I'm afraid of missing too many physical and occupational therapy days for Little. I've not called Tanya as often as I should. I've not reached out to my friends whose husbands are deployed like I should, I've not driven the 15 minutes to Hopkinsville to spend time with my friends there very often even though I know that Mister and I are one of the reasons they chose this base. I have a relative who passed away and I've not sent so much as a condolence card yet and another who just had major surgery with more on the horizon who I've not had a chance to go visit. Ashley and Brooke, I don't even remember the sounds of your voices anymore. I have friends who are pregnant, have given birth, miscarried, had medical situations, bad days, good days, graduated, divorced, found Jesus, found that pen that'd been looking for, lost a shoe, whatever - I haven't been there for them. It's like I forget that you all need me as much as I need you. I hope you can forgive me for this period of grief/mourning/adjustment/I'm not sure what to call it. I'm not even sure how long it will last. I guess I am asking for patience and forgiveness as I find my footing. I don't like not being someone you can count on. Right now my church is looking for someone to take over play date and before, I would have jumped on something like that, but right now, I am not raising my hand. I am just in no place to lead anything and I hate it. I feel unreliable and consumed with all things Little. And I am so sorry to everyone who has fallen to the side. Not long ago in our Sunday bulletin, someone wrote in there under Andrew's entry that he is such an energetic little boy (I'm paraphrasing here bc I don't remember the exact words) that it is easy to forget that this is something we deal with on a daily basis. That is exactly the truth. And it has only been 1 year - so I'm just not settled in yet.
So to switch gears here, I would like to bring a little attention to a few folks who have just really blown my mind over this past "first year with Duchenne". Tons of people have shown love and support, but there have a few who have really just shown me thier big ole hearts like none other -
Chet and Hazy - Hazel is my friend Jayme's mother. She is marrying Chet and in lieu of wedding presents, they have asked thier guests who feel compelled to give something, give to Andrew's Medical fund or MDA's Duchenne Initiative. Isn't that outstanding????????!!!!!!!!! Oh and I should mention - Hazel and I have never met!
Ghengis Family - Yup, that's a nickname because I don't want to embarrass you. You know who you are, you know what you've done, you know how I feel about you.
Kari Beckham - Kari's mom owns a .........diner? Cofee shop? Errrr place where people come inside? lol Anyway she has a customer who owns a tee shirt shop and Kari took it upon herself to get me a deal on some new Little's League tees! So now I can offer toddler sizes! So $15 bucks if you want one, you know the drill on how to order and pay. And if you are in NWA, you can order through Kari. :) Kari - You rock my face off!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I have another friend who will be mortified if I single her out on here. So.....hmm.....how shall I do this....I will call her....Ah, I know - Hey you - you who had that conversation recorded by my son's Leap Pad without your knowing? Yeah, you! You know that thing you did for me that I ended up not needing? Well it meant SOOOOOOOO much to me. You know how you like threw yourself into my needs the last few weeks? I can't tell you how much it meant. You are one awesome friend. Not a scumbag at all ;) If/when you leave - I will miss you terribly.
Amanda Swanson - You've done more than I can single out on here. You are amazeballs and I love you.
Barker's Mill Church of Christ - You all have accepted the 3 of us with love and open arms from the moment we first walked through your doors just over a year ago. Mister and I knew instantly that this was the congregation for us. Maggie, when you and your students held your talent show in MDA's and Little's honor - well you'll just never know what that meant to me. Wayne - your constant prayer requests to the congregation on Andrew's behalf and mentions of him in the announcements and opening prayers and Sunday bulletin just bring so much joy and humbleness to my heart. I'm pretty sure you know that, though, by the way I hardly ever make it through a single service without at least 1 tear escaping, lol. Last week might have the first time ever! I was so proud of myself! Kristin - I miss you. Whitney - You just get a whole bunch of hearts made out of less than or equal to signs and threes <3 <3 <3 <3 You all at BM truly have made us feel at home in those pews.
There are so many more of you who have stepped forward with open arms and hearts since we got the diagnosis last year, too many to single out, so please don't think I haven't noticed you if I didn't mention you by name. Not just friends and family - but also complete strangers! Like Hannah from Ergo who stepped in when she read about us and my wish to find a carrier for Little. And just a few days ago a total stranger contacted me on Facebook and asked if she could link us over to her uncle who is a Shriner and get us into the Shriner network and possibly into the Shriner Hospital one day if we ever need their services. I mean I am just awestruck by the kindness and generosity that has come flooding our direction this past year. I hope each and every one of you know very grateful I am to you and for you. There have been times (will continue to be) where your love and support are what got me through to the next day and knowing that you are praying for us - that is the biggest blessing of all! Please continue to do so as this is a disease that brings daily struggles and challenges with it. We will be constantly learning how to adapt and navigate through life with Duchenne and we hope you will bear with us. We love you all and again are so thankful for each and every one of you.
The other awesome thing that has surfaced in and around the fire swamp of DMD are the people that it has connected me to. There's Elaine, who writes The Cabe Journey, and we've become friends. She reached out to me right before her son's diagnosis was confirmed and she was my first fellow Duchenne Mom, so I feel a kind of special bond with her and her son. I want to protect all DMD boys from the terrors of this disease, but there's something extra there with Aidan - I want to reach out and bubble wrap him! Then there's Morgan, whose son was a student in my sister's kindergarten class one year and she painted a picture of us at MDA's Muscle Walk for her as an end of the year gift. She is a remarkable woman and you should click on her link to learn why. I also have become a published author (yet I use that term in the loosest possible way) - if this is the first you are hearing of this, then go walk into a wall, come back, go walk into the wall again, then come back and click on the picture of the book on the right hand side of this page. I've also picked up a lovely set of monthly migraines, grown a streak on the front of my head that I not so affectionately call "the grey pride parade" and have become that woman who never shuts up about her child. It's been a lovely year.
Once again, I am quite aware that this post is not in my usual tone. I am a bit worn down. I am in pain - I mean that physically. Those of you who know me in real life know about the whole migraines and chronic frontal headache vs doctors who won't listen to me situation (starting on month 11 now! woooot!). Writing this blog has made me both sad and grateful. Sad at what is coming down the road for my most precious boy - the one I would give my own life for and grateful for what I have today and what you all have done for him. I end this with the verse I just used the other day and will use many many many more posts to come because each time I read it, I am reminded that God will make him whole again - will free him from his Duchenne and it recharges my soul, something I need today.
"but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint" Isaiah 40:31
Oh, and buy a shirt! sizes 2t. 3t. 4t. 5t. yxs. ys. ym. yl. yxl. adult xs through adult 3x, $15,royal blue.
This is the Soller family - Jayme, Nathan, and Kyle. Nathan is wearing my "I hate Duchenne Muscular Dystrohpy" shirt that is for sale on my cafepress site. They are my Little's League team members this week. Making some serious muscles there, Sollers!!!