We live in Florida.
We live near Orlando.
What do we do for fun?
For the past 5 years, we have been lucky enough to receive a sticker and a card that allows us to take Jack’s wheels on rides with us, or to use exit ramps as our point of entry to rides. At no point did we ever think that made us more special than anyone else, it just helped us to help him enjoy the little bit of Disney that he can. When he can. Sometimes. This magic card is called the Disney Guest Assistance Card.
A few months ago, we visited for half a day, and I was shocked to find out that they were no longer issuing the card for a two month period (we have annual passes, so they were generous with their dates), but rather for a two week period. Around this same time, there were articles published (which I refuse to link to, because, it disgusts me) about tourists using wheelchairs to get the Guest Assistance Card in order to get in to rides faster/by pass lines all together. That, my friends, is sick and twisted entitlement. Gimme, gimme, gimme. “I want what you have because I’m special too” syndrome.
To those who would do such a thing, I offer you a taste of the fun of Disney with a disabled child.
1. Get up at o’dark thirty.
2. Pack: medicine, water, feeding tubes, blankets, sunscreen, hats, umbrellas, diapers, wipes, masks, gloves, etc. (and there’s LOTS of etc.).
3. Figure out how to get all of that either in a bag or a backpack that will actually hang on the wheelchair. Good luck.
4. Wake the little darling up.
5. Listen to him cry for 45 solid minutes because the routine is changing, and dang it, that’s just not OK.
6. Give up trying to get shorts on him (he doesn’t believe in them anyway), and get him in to the car.
7. Start driving only to remember that you forgot something (repeat this action three times with varying distances of driving).
8. Arrive at the park.
9. Watch people fight and fuss over absolutely anything. And I mean anything.
10. Have people yell at you because you dared to say “excuse me” so you don’t ram them with the wheelchair. That’s always fun.
11. Have random children point and make fun of your child, loudly.
12. Try to find a place to tube feed at noon. Watch people eat their food and stare at you, while complaining that someone would do such a thing in public.
I could go on and on…
But then, it gets better…add in weather. Try to push a wheelchair and carry an umbrella at the same time in one of Florida’s thunderstorms.
So, for you people who think it’s super cool to act entitled so you can get in to rides faster….
I hope you choke on your entitlement. I’d say other things, but my mother is going to read this.
And, Disney…remember that not all your guests are just here for a week. Some of us live here. Some of us will be disabled forever. And some of us deserve a little bit of consideration (especially the ones who cannot speak for themselves).
I haven’t written here in the longest time. Not because I didn’t think about it, but because I didn’t want to. Our lives were borderline routine (I know!) and we were just….being. I graduated in June and Sebi got a promotion. J was doing her 4-H/bird sanctuary thing, and Jack was…Jack.
In July, the kids saw the pediatrician for their yearly appointments. The doctor and I had a lengthy discussion about some things that were unusually unusual about Jack, and he made a phone call to one of his doctor friends. The friend turns out to be a metabolic specialist who agreed to see Jack the next day. We were seen and he ordered a battery of tests that were completed at the children’s hospital a few weeks ago.
Yesterday, our world was turned upside down, inside out, and backward.
Jack has mitochondrial disease.
**Before we go any further there are ground rules here. Do not tell me about a friend of a friend, whose child went to this hospital and saw that doctor and it’s a miracle. I don’t want to hear it. Don’t tell me how God knew Jack needed us. I don’t want to hear it. Don’t tell us how strong or brave we are. We’re not. And I don’t want to hear it. There are things better left unsaid. Please. Thank you.
What I do want:
1. Prayers. We covet them. But I don’t want prayers for miracles and things like that. I want you to pray that God’s will be done.
2. And with that, please pray that Sebi, J, and I can wrap our heads and hearts around that.
Nothing is really changing in our lives right now. We are not pursuing further testing, because, quite frankly, there’s no difference in the plan of care (mostly because he’s adopted). It doesn’t matter if it’s primary or secondary. The outcome is always the same, and the treatment is the same. He begins the “mito cocktail” later today. Next week, we see an immunologist to find out if maybe there’s something we can do to boost his immunity a bit to help him fight the fight a bit stronger.
He is currently swinging a sword around the bedroom fighting imaginary Star Wars guys. There’s lots of “pew-pew”-ing and the occasional explosion noise.
See, nothing’s changed.
20-some-odd years ago, I grew up in a little, tiny town. Everyone knew each other, and their business. Sometimes, this life was endearing. Other times, it was infuriating.
I grew up in a time where throwing around the word “retard” didn’t phase any of us. “Dude, you’re such a retard!” It meant something close to “meaningless.”
I told people they were meaningless?
I told someone’s child they were meaningless? I am embarrassed to say that word was part of my standard fare of language. I did not realize how I was probably hurting some Mother’s heart. For that, I am extremely sorry.
6 and a half years ago, we brought Jack home and covered him in love. We had no idea the kind of road we would travel. Diagnoses, testing, waiting, bad news… However, my child is not meaningless. He means the world to me. To my family. To our extended family.
When Jack was 12 months old, he started speech therapy. His therapist used to tell him to “use his words” when he would only make noises. He would babble something that made no intelligible sense, and we would cheer! He chose to try to use the few skills he had to make something other than a noise.
If my kid, who has more diagnoses than he has fingers, can find the ability to use a new word, why can’t we find a better word to use than “retard” or “retarded?”
As a society, we have devalued the human race on many fronts. We have taught our children to say things that hurt without caring. We have shown our children, through our own actions, how to not care about others. We have become too involved in ourselves and missed out on the fellowship of others, regardless of their intellectual levels. We bully. We shame. We stigmatize. This is not acceptable.
We need to change.
I know you read this from time to time. I also know you don’t want me to gush over how awesome you are. I will keep my mouth shut, but only for today!
You’re finally a teenager.
I know you think you’re grown, and you probably don’t want to listen to my advice, but trust me…I wish someone would have given me some solid advice. Non tried. Meemaw tried. The problem is, when you turn in to a teenager, you stop listening and you only hear. Don’t do that. Listen. Even when you don’t want to. Because someday, Meemaw will be gone…I’ll be gone…Ronca will be gone…and you’ll be sad that you didn’t listen more.
Boys are dumb. They stay dumb until they’re 25 (it’s truly a magic age. After 25 they can be tolerated again). Basically, they like girls and sports and eating and watching movies. Keep that hard exterior that you have now. It will serve you well in the dating world. Don’t give away your heart too easily…broken hearts suck. Just like boys until they’re 25. By the way, you can’t date until you’re 40 (kidding…mostly).
Education is valuable. I know that right now all you want is to be a chef. I think that is a fabulous idea, but get a degree anyway. Someday, when you’re running your fancy restaurant and doing a show on the Food Network, you’ll thank me for that degree in ____________.
Try things. Go places. Create adventure (don’t try drugs though. I will kill you.).
Be friends with everyone. Don’t try to join the “in” crowd. Those kids will only lead you down a path of judgment. You will never learn the value of true friendship (friendship that transcends), and really, clothes and shoes do not make a person any more valuable. Besides, someday you’ll be 35, sitting at your table, reading your Facebook feed…and the “in” crowd will be selling used cars, divorced, and still just a judgy as they were then. And you will be able to laugh knowing that you got the better end of the stick!
No matter how big or small you think your troubles are, remember that you have parents who love you and will listen to you whenever you need us. Don’t ever be afraid that something you have done/want to do/regret is too much for us to handle, or that we wouldn’t care. If you just need us to listen and not give advice, one of us will be able to do that, while the other may have a hard time. I bet you can guess which is which…
Just keep swimming (literally and figuratively).
With all my heart, I love you, J. Happy Birthday! xoxo
Happy Birthday, Buddy!
I thank God for you each and every day because having your in our lives has made us rich. Not rich in fame or fortune, but rich in love…in hope…in a deeper faith.
What would I possibly be without YOU?
Right now, you’re totally in to questions…you always ask “why?!” and “how many is zero-zero-one?” So for you, I am going to tell you the six things I love the MOST about you (today—it’s a dynamic list!).
1. Your heart. In all my years on this earth, I have never met a person with the capacity to love like you. You know no stranger. The world would be a better place if we all acted like you.
2. “I love you, Momma!” When you are confused, or can’t find the words, or are just exasperated…those are the words you choose. It both breaks my heart and makes me melt. Thank you for making me your Momma.
3. Your dimples. Seriously, I want to take you to the UN so you can stop wars with them!
4. The way you created our family. Before you, our family was not strong. There was always someone fussing with someone else. Or, rather, we all just didn’t talk much. When you stepped in to our world, you created this dialogue between us all. Because of you, Ronca is my confidant, and Uncle Ben is no longer on the “DO NOT ANSWER” phone call list! Aunt Abbey is my favorite texting partner and Uncle Brian’s laugh is contagious. Jack…you rock.
5. You believe…. Jack, I have never in my life seen a child who believes like you do. You believe that Star Wars is real, that God himself lives in the church (let’s not get all metaphysical on this one), and that one day we really will see a dinosaur in our back yard. I want to believe with a child-like faith like you.
6. Your lungs, tummy, g-tube, brain… If you were a “typical” kid, I would have never learned to appreciate each and every day I have been given. I wouldn’t wake up thanking heaven for the fact that I am waking you up. I wouldn’t be thankful that there are advances in medicine that can keep you here, in my arms. That’s where I always want you to be.
I love you, so very, very much…my beautiful boy.
You know, I am not usually up on current events or pop news. I catch bits and pieces of Good Morning, America occasionally between getting children up, moving, and ready for their day. The only reason I know anything else is because A got me a subscription to Us magazine for Christmas. I’m currently still reading April’s first issue.
Yet, I heard about the new fad diet to help brides get skinny for their Big Day. They have a feeding tube inserted through their nose and they carry around their 1000 calories of liquid nutrition for 10 days to lose weight.
Take a deep breath, and absorb that…
Believe me, I am totally against this type of reckless behavior. As a nurse, I can only imagine the detriment this could possibly be doing to multiple systems of the body (and quite frankly, I think the doctor who is willing to do this…ugh!). As a mother, I am irritated that our daughters are being taught, once again, that you cannot be beautiful unless you are pencil thin, with big boobs, and lots of junk in your trunk.
What the news media fails to mention, or remember, is that…
I thank God every single day for the feeding tube diet.
My son survives because of this “wacky” diet. Without that tube giving him the sustenance he needs (plus vitamins and minerals), he would not be walking this earth. He has to sleep in a special bed with the head raised to a specific height. He has to sleep with a plastic tube running from an IV type pump to his stomach. If he rolls over, it pulls on the tube causing pain. If he pulls the tube out…he could damage himself permanently. He receives every medication through his feeding tube. It has to be covered when he plays so that he doesn’t pull it out, and so that nothing foreign could get near it causing infection. He can’t ride many rides at theme parks, because the bar to hold him in would rub his tube. He can’t play like other kids, because he might pull the tube out.
Every pound he loses will take weeks or months for him to regain.
So, sure, it sounds like a great way to shed pounds fast (can you hear my eyes roll?).
Please, put some more stigma on my kid while you’re at it too.
Is this optimal for Jack, no.
Is this the way I pictured my life, no.
When we were faced with having Jack’s tube placed, I agonized. I researched. I cried. I begged God to miraculously touch my son and heal his brain so he could swallow. I sat with speech therapists and cried. I talked to other moms…and cried. And when I held my tiny, 13 pound, 8 month old son when he came back from surgery, I cried. I cried because I knew his life was saved. Even though that was the hardest decision I had ever made.
That was almost 5 years ago.
I thank God for the feeding tube diet, because every day I have to wake up at 4 AM to silence the beeping from that $^%&*&#(* pump, means that I have another day with Jack.
In honor of Mother’s Day, I’m letting you in on the Secrets to Being a Good Mother.
Remember when I wrote her this? (sorry about the link. Everything got messed up when I moved to this site…)
So, without further ado..
More Things I Have Learned From My Mother:
1. Name your children good names. Or, name them names that will prohibit them from ever having a job which would scare the life out of a mother. Case in point: “Heather, Jack will never be able to be a pilot. His friends would yell ‘Hi Jack!’ and it would scare people!”
2. When your husband is rushed to the hospital via ambulance and you are called to be told he’s had a heart attack—RUSH to the hospital. When the doctor tells you he’s thrown his back out, and is not, indeed, having a heart attack: slap him (the husband, not the doctor).
3. The death stare is something to use only at appropriate times. Like, for example, when your 4 year old stands in the courthouse screaming that he’s not ever going home until you change his name to Luke Skywalker.
4. Erika Kane is not real, and we should not write to her as if she is.
5. One should never, ever tell small children to jump off the stairs in earshot of a mother.
6. It is completely appropriate to have your child and your husband sleep downstairs, wielding barn cats and tennis rackets, to chase the chipmunk out of the house. It is not appropriate for them to make fun of you because you’re afraid of said chipmunk (ferocious he was, I tell ya!).
7. When a very large man falls through your ceiling, and 4 other large men are standing all around him saying bad words, one should always be prepared to cry. Immediately.
8. As Youth Group leader, you cannot expect your own child not to be the protagonist. You should be proud that she could burp all 66 books of the Bible!
9. If your child calls you crying because she hit an opossum, then ran back over it because it was crying and miserable, you should probably not laugh and hang up on her.
10. One of my favorite things she ever did ever…when I was younger she would send me her used magazines–and she would write comments on stuff she liked or stuff she thought was funny (we should do that again, Mom!).
11. The Easter Bunny is a privilege, not a given. Just ask the child who locked his sister in the basement.
12. Everyone should own a terry cloth, one-piece, short, tube top jumpsuit. And NO ONE should ever make fun of them (My personal favorite was the white one with watermelons all over it!).
13. Regardless of what Pappy (my grandfather) tells you, Hippos don’t lay eggs.
14. If there is a large snake in your yard, send the children to kill it. Give Scared (me)a shovel, and Scared-er (brother)a gun. Let’s see how that works out.
15. Being a grandmother is bliss. Have your granddaughter paint your toenails while repeatedly asking her what she calls the Resident Groundhog! Then laugh. Until the tears roll. (J called it the Silver-Backed Beaver. She was 3)
16. At large family weddings, write notes to each other on the program. It’s probably better to not mention that your husband is wearing the same tie to this wedding that he wore to his firstborn’s baptism thirty years ago, though.
17. The correct response to all disasters is: “Oops, We’re gonna need another Timmy!” (extra points if any of you know what I am talking about!)
18. We shall Never speak of the Pepsi Can Incident of 1997 again.
19. My first grade teacher (and member of our church) asked me what lullaby my mom liked to sing to me, and I told her “3-6-9 the Goose Drank Wine!” Naturally!
Happy Mother’s Day Mom…I love you!
You know how when you go on vacation and it’s bliss the first few days, but by day 4 you’re dreaming of your own bed, your own smells, your own routine?
The new wears off. It always does.
That’s sort of where we are right now. We’re all moved in. Walls are painted. Pictures are slowly being hung on walls. We had the landscapers come and remove the jungle which was growing up all around us take care of some needs around the yard. You know, normal moving activities.
But we’ve also been to the pediatrician, neurologist, gastroenterologist, and pulmonologist. Multiple times. Already.
S is settled in to his new role; although, he is still not done with his old hotel (which makes life a bit more, shall we say, complicated?). The new hotel is progressing nicely and he is happy. Really happy. He needed this. He’s happy in the house too…it’s enough of a project to keep him busy, but not enough of a disaster to make him crazy. He’s been enjoying cooking out and cleaning the pool (or should I say, removing the frog that keeps trying to live in the pool). I’m so proud of him (and not just because he saves me from the frog).
J is growing up. In so very many ways. She is a beautiful example of what a person should be, and I am so honored to be her mom. I have watched her take things that others would balk at, and shine. I have watched her get her feelings crushed, but still manage to keep her head up and move on (I’ve also experienced a lot of the slamming of doors, rolling of eyes, pillaging of the fridge–she’s still a (an almost) teenager!). She is going to enter a new school in the fall. I think it’s time for her to meet some friends and be a kid. She has spent far too much time being my sidekick. It’s time for her to find her new sidekick, and as much as that breaks my heart, I know it’s what is best for her. I’ll miss her…
She went to the doctor yesterday as well. Her ear is all swollen shut, and they are concerned that her tumor might have grown back. She’s been having dizzy spells for a while and I had her tested for everything from malaria to die-uh-beat-us (spoken in my best Wilford Brimley voice). I never thought it was her ear again.
Jack is Jack. We aren’t sure which Jack we will encounter when he hits the floor in the morning. It’s either Jack the Beast or Jack the Gem. Unfortunately, the former is more common than the latter these days. He’s begun to exhibit signs of self aggression again, and we’re struggling to keep him from hurting himself.
He’s supposed to enter kindergarten in the fall, but we’re not sure what we are going to do. There is a special school here–they teach life skills rather than your typical school stuff. It’s hard to admit that your child will never probably go to college or that your child will never probably be able to be age appropriate. I know for sure that we need to do something, I’m just not sure what the best answer is.
The school is expensive. I am jobless. Not that I haven’t tried to get a job. I’ve had interviews. I thought they went better than they did. The problem is, in order to be hired as a nurse, I’d have to be paid $xx.xx per hour. Which is significantly higher than, say, a new graduate nurse. So, who gets hired, the new grad. I can’t really have the higher level jobs yet, because I haven’t officially graduated (but I can see the end of the tunnel!). So, I’m stuck being called for interviews and then being passed over because of my over-qualifications, or my under-qualifications. So, we can’t really afford Jack’s school until someone decides to hire me (and we wonder why there’s a nursing shortage?).
Physically, he’s doing about the same. There was a piece of me that was sure when we moved, some miracle light was going to shine upon us, and Jack was going to be…I don’t know…better? Each doctor we encounter looks at me with the same sad eyes and says things like, “we’ll keep him comfortable,” or “we can only treat his symptoms at this point.” It’s heartbreaking to me, but I really hope, with all my heart, that he doesn’t truly understand what they say about him. I can’t imagine what that would do to him. How does a 5-year old reconcile his own mortality? I don’t want him to experience that. Ever.
So, the new has worn off.
That means we are home. Forever.
5 years ago at this very minute…
… we had no idea what our lives were going to turn in to.
… Non was holding my hand.
… Jack didn’t have a feeding tube.
… J was grumpy because she wanted attention.
… we lived in Savannah.
… our friends and family were all with us.
… we were so happy—blissfully naive.
… it was a Tuesday.
–and with the signature of a judge, our son was ours. Ours.
It really was Jack’s Big Day.
And it always will be.
Look at how many changes happen in the blink of an eye. So much has changed us–there by shaping who we have become. It’s a good day to reflect on how quickly the tide changes, and how grateful we are for each and every person who stands by us, fighting for our Jackpot. Thank you…from the bottom of our hearts.
Motherhood is hard.
I’ve spent the past few months struggling with my own internal turmoil. The move, the holidays, having family near (yet not wanting to ask for help), dealing with new doctors…you name it! My usual transparency was replaced with this person who I didn’t really like. The person inhabiting my body was not the best me that there is.
I’m looking for her.
And she’s hard to find.
My children…they are my world. Truly. I couldn’t love them more—together and individually—if I tried.
On one hand, I have this beautiful, blossoming young woman who sits across from me at breakfast. She is smart and funny one minute, and quiet and tearful the next. She runs the gamut between emotions on a daily basis. Frankly, I don’t know how to help her. I don’t know how to help her find her own skin when I can’t quite find mine either. I know adolescence is rough, but I don’t want her to feel like she can’t come to me and talk or ask questions.
I also know that the hand of cards she’s been given is not necessarily fair to her. She’s carted to doctor’s offices and has heard more horrific news about her brother than any child should have to. She knows how to hook up a feeding tube, how to work the chest percussion vest, and what meds he gets at what times. While I appreciate her enthusiasm to help, I worry that this is too much for a little person—because even though she’s a big girl (at 5’8”), she’s still twelve. This is a burden for her heart.
On the other hand, there is Jack. He is talking more (we call his language Jackinese) and developing his own personality (he’s funny—really funny!). He’s starting to realize that he’s not quite like everyone else, but he doesn’t know how to embrace that. He asks questions but cannot quite understand the answers all the time. His days are precious to me—every single one that I am given.
My patience wanes. I fuss about “normal” mom things—laundry on the floor, dirty bathrooms, sibling fighting. I worry about providing them each a good life in a happy home. I worry about flu and germs and icky lungs. I worry about finances. I should be graduating in a few months and I’ve started to look for a job—which comes with another set of worries. I worry, I worry, I worry.
I looked in the mirror this morning and thought, “Dang, girl! Pull it together!”
From somewhere deep in my soul, I felt a stir of my former self.
She’s in there.
She’s got hope.