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.
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.
Two days after Christmas, we packed up everything we owned and moved.
To tell you it was fun–well, it wasn’t.
However, in true Hopeful fashion, we’ve had some moments that will make you shake your head.
We have a chicken. Her name was going to be Attila the Hen, but she’s named Betsy…
On the day of the closing, S and I left the kids with P and headed to the lawyer. As we made small talk, she told us that she was really happy we were taking the chicken. (I’m thinking, “what?”). We started signing our lives over to the bank, and after giving us the keys, we were told to hang on for more instructions.
Instructions for what, you ask?
For Betsy the Chicken. We were told how to feed her and care for her and…I kid you not…how to talk her off of the fence so she doesn’t jump.
She’s been a constant source of amusement for all, and apparently she is well-known around the neighborhood (as evidenced by Neighbor 1 saying: “Did you decide to keep Betsy?”). Actually, she is well-known all around our town because when I went to the feed store for her food, the man working asked if I bought the house where Betsy lives.
Who knew I’d inherit a famous chicken?
The house itself is great. I love it. It’s home. We have family here. I couldn’t be more pleased if I tried.
Jack has seen a few of his new doctors.
To say I’m delighted would probably be the understatement of the year! His GI here is a lovely woman doctor…she is gentle, kind, and doesn’t think that I’m crazy! She agreed with the plan to not feed him orally more than what he is doing now as it’s a risk for aspiration. She was just fantastic and I really think she wants the best for all of us.
Today we saw the new pulmonologist–which went a little less wonderfully. Not because I didn’t like the doctor. No! The doctor was a total Rock Star! He and I talked and discussed a TON of stuff. He thinks that to combat Jack’s apnea, we should have him on some oxygen at night (since he won’t tolerate the C-PAP). I couldn’t agree more, but the pulmo in Savannah was not at all for that idea. He would prefer if we didn’t offer Jack anything orally for a while until he can fully assess his airway and how much damage has already been done.
So we’re sitting there, and he decides to do a random pulse oximetry (it measure the amount of oxygen in your blood) on Jack. It was 90. Then it was 87. Then it was 90. Then it was 88. Then I almost passed out because it’s supposed to be 99-100. In the hospital, we like to keep our patients above 92. So this wasn’t awesome.
Jack’s overachieving self earned us a trip to the hospital for chest x-rays. He’s also getting a referral to the cardiologist because Dr. Lung thinks that maybe he could be having some issues there too. You know, because Encyclopedia Jack isn’t thick enough yet. Or something.
We’re also doing another sleep study in a couple of weeks to see if the oxygen will help at night. I’m hoping that we are finally getting to a place where we can keep him comfy and hopefully not do any more damage to these fragile little lungs.
Unfortunately, he did agree that palliative care was our best option.
The only good thing about that is that we get to go to clinic on preemie day so everyone wears masks and no one touches him too much.
J is happy as a little clam. She’s thrilled to be near her cousins! She’s loving being outside all the time. She and the chicken are best friends–so much so that the chicken follows her around and keeps trying to get in the house. J can’t wait for the pool to be ready and to start swim team. She’s growing up–she saved all her money for a year to buy an aquarium. Now that she’s met that goal, she asked to open a bank account so she can save money to buy…a house.
Yep, a house.
“Because, Momma, it’s stupid to rent. You’re throwing money away!”
(My little miser!)
I’ve missed you. xoxo
Just when I think life is…oh, I don’t know…somewhat OK—I get sucker punched.
Last week, Jack had a GI appointment. Sebi went with us to make sure I didn’t end up in jail. While talking (yes, JUST talking) and scheduling a procedure, Mr. Jack began the poop push. The kid is on several adult doses of laxatives a day, and he still produces rabbit pellets every 3 days. After pushing, and pushing, and making us all feel bad, he finally produced. Sebi left and I packed up the chair and the kids and got in the car.
We pulled out of the parking space, and Jack says: “MAH BUTT!” So I pulled back in. He produced again. Only it wasn’t pretty. I cleaned him, and we headed on. By the time we drove 3 blocks, I had to stop again. We got to TJMaxx, and I had to stop. I left TJMaxx twice. We also made deposits at Checkers, Burger King, an auto parts store, a McDonald’s, a gas station, and Kroger before we made it home. I had to stop and buy diapers and wipes.
I was crying–begging Sebi to call the pedi to get him in. Janson was crying from the toxic fumes.
We made it home in time for another round of “drama!”
I knew before we even hit the doctor’s office that Jack had strep. This is exactly the way he presents (some kids barf when they have strep, mine blows out his colon. It’s a gift). The doctor patted me on the back….and told me that I need to keep him homebound for school (which was kind of nice, because I was afraid she was going to be all about putting him in a real classroom!).
So I spent the last week in a fog of antibiotics, fever, and whining. And of course, Sebi was out-of-town. I was so tired and stressed at one point…I took a shower. A real hot, long shower. The one where you cry and talk to God and let it all out. I felt almost better until I went to wash my arms and realized I still had my bra on.
This week…J has it. Only she’s not as whiny and her colon is fine. Jack went to Dr. Lung today. He’s a hot mess. His lungs aren’t really getting better (not that they were really supposed to being that he’s palliative). She was hoping that we could make it through a season without steroids. That’s not happening. His lung function has decreased a bit. Not anything major, but enough to warrant upping some meds and changing others.
It’s such irony, you know. I sit there and talk about such heavy stuff with her, and Jack is smiling and laughing and yelling, “I LUFF OOO!” at her. Wouldn’t it be awesome if we could be more like him, and less like…a giant ball of worry? She suggested we enter hibernation until spring. Sebi and I are going to work on a plan where we don’t take Jack out at all, but I can still get errands and things done. We’re considering a clone, but I hear they’re expensive…
There is (hopefully) going to be some news out of Fort Hopeful within the next few weeks that will change the game all together. That’s what I am looking forward to. Hope is the only thing getting me through right now.
(I really do wish I could be open and honest with y’all. But I can’t for various reasons…don’t need to feed the animals! You’ll forgive me later, I promise!)
Today was Jack’s IEP.
We’re professionals at this, so we were prepared.
Basically, they (finally) came to terms with the fact that they are putting unrealistic goals on him, so we’re backing off. They also have decided that his medical issues are bigger issues than his learning disabilities, so we’re going to (finally) take that in to consideration.
They will be sending an occupational therapist to the house to evaluate him for assistive technology (finally) to see if he’s more appropriate for a keyed type computer, or something like an iPad. Either way, it’s a good thing. He still qualifies (easily) for speech. Her goals have changed too. Mostly because he’s not progressing as well as they had hoped, but that’s OK.
They would like him to enter the Medically Fragile Classroom at the start of next year. I’m not sure that’s at all appropriate and I said as much. They actually agree with me, but because they’re “with the District” they have to tell me what the District wants me to hear.
He did fairly well on his testing. Of course, motor skills are quite lacking, and fine motor is worse, but we’re plugging on. We’re going to work on having a picture schedule hanging somewhere for him, so that if there is a change in plans, we can show him by picture, rather than having him freak out over change. I’m not entirely sure that will work, but it’s worth a shot…
That’s it! I’m thrilled that they are (finally) joining the year 2011 and allowing us to discuss assistive technology. It makes no sense for it to be there for use, and them not to allow us to utilize it. It’s going to be a definite improvement over the current frustrations of having a kid with an essential tremor try to write his name and cut with scissors!
“You can forgive someone almost anything. But you cannot tolerate everything…We don’t have to tolerate what people do just because we forgive them for doing it. Forgiving heals us personally. To tolerate everything only hurts us all in the long run.” Lewis B. Smedes
What happens when someone hurts you—deeply—in that place in your heart that makes you catch your breath and simultaneously feel the need to vomit? Do you automatically forgive? Do you ponder things in your heart?
We have all been hurt. Usually, we are hurt by those who claim to love us the most. Sometimes, we get hurt by sharp, biting comments. Other times, we get hurt by the giant rock, that falls seemingly out of nowhere, to squish us to death.
The other day on The Twitter, I mentioned that forgiveness is simply giving up the hope that you can change the past.
I believe that with all of my heart.
Should I be mad at God because I cannot birth children? Should I be mad at my friends because they can? Should I hate everyone who mentions that they are pregnant on the face.book?
I cannot change the fact that I have no uterus. I cannot change that Jack may never eat a hamburger.
I forgive my body.
I forgive his birthmother.
My own personal struggle with forgiveness revolves around people. People who speak out of both sides of their mouth. People who lie. People who refuse to recognize those who are “different” than them. People who do wrong just because they can. People who feel entitled to greatness…just because.
Forgiveness, friends, does not mean that you sit around a campfire and sing “Kumbaya” and roast s’mores.
Forgiveness may mean that it’s time to move on…choose a different path…surround yourself (and your family) with those who value the same things you do.
Forgiveness means that there is hope for a better tomorrow.
We have moved on…the future is bright.
Tomorrow, Monday, March 21, is World Down Syndrome Day. Just because a kid is born with an extra chromosome, doesn’t mean that child is doomed.
As a matter of fact, I think those kids are doubly blessed!
My cousin was born with an extra chromosome. He was the sweetest boy ever. He was born in the era when a child born with Down Syndrome was told to be placed in “a home.” My Aunt Betty refused to do that.
She raised him–and was the first person to show me what it means to have a strict schedule with your special needs child! She would have a calendar of the meals (hamburger on Monday, Spaghetti on Wednesday!) –I remember it so clearly!
As an adult (which everyone was told he would never live to be), Johnny went on to get a job! There is a factory near where I grew up that employs special needs adults, and he went off to work and loved it! He lived a long and happy life born in 1955 and dying in 2009.
So, where does Non fit in?
Non loved Johnny. He loved her back something fierce. He would sit for hours at her laundry chute…cutting circles out of notebook paper and drawing smiley faces on them…then dropping them down the chute. She danced with him at weddings. She brought him little toys and souvenirs from any trip she took. He colored her pictures. They were buddies.
If you look in your own life, I bet you are somehow tied to someone who has an extra chromosome.
In my own world, I can name several families who we love!
Today, let’s not be sad because of this. Be thankful! Thank goodness for medical advances that allow children to live a long and happy life. Thank families for becoming more aware and for advocating! Thank society for becoming more accepting (albeit, there’s a lot of work to do on this one!).
I’ll be thinking of Non and Johnny…cutting out circles and drawing happy faces…
…and how much she taught me about who I am today.
After hounding working hard to advocate for Project Lifesaver for the past few months, we finally received word that Jack’s number had come up on the waiting list!
Last Friday was our appointment. The local news showed up to do a follow-up story (which meant Jack got to spend some quality time with his girlfriend, Meredith!) and Sergeant Awesome drove up in his Police SUV.
After hugs and introductions (as IF I wasn’t going to hug the neck of the man who was making my life better!), we got down to brass tax. He required specific information on Jack (such as full name, pet names, names he calls people he loves, favorite movies and toys, what medications he takes and dosages, etc.). He then got in to the contract.
Can I just tell you? That contract…40 eleven hundred pages long. And, sadly, there is a clause in it that says that the parent is not to use the bracelet as a substitute for parental supervision. That means, somebody must have done it! Can you imagine? GAH!
Anyway, after all the contractural stuff, he affixed the bracelet to Jack’s ankle, and showed me how to check it daily.
We wrapped things up and everyone headed out of the house. Jack was blowing kisses and everyone was having a Big Fat Love Fest.
Except my neighbor….who, upon seeing the police and news at my house, came running to make sure we were OK.
I politely informed him that Sebi had tried to do me in the previous night, but all was well.
Everyone got tickled, except the neighbor. Sergeant Awesome told him the story—which is not near as exciting as axe murder evidently!
So, we are wired! It’s a wonderful feeling to know that someone’s got my back if we get in to a precarious situation with Mr. NoOneIsAStranger.
After everyone left, Jack had an opthamology appointment. He’s now sporting the cutest glasses ever, making him the most handsome boy in the entire universe (if I do say so myself!).
Adoption is very close to my heart….as a matter of fact, it sits on my lap as I type.
I wrote a love letter to my son today.
because…when it all comes down to it–
his blood is my blood.
His genes, my genes.
His hurts, my hurts.
…and anyone who disagrees is not welcome at my table!
It’s been busy.
My children both had birthdays.
My favorite father in law arrived from Chile.
The ogre under the bridge reared its head and attempted to steal my sanity.
There have been doctor’s appointments….
My son has been diagnosed with autism. [On top of all the other stuff. ]
You know, as rough as it was to hear…it was refreshing. I don’t understand how it could have been a surprise?! He perseverates, is compulsive, aggressive, has not a ton of language skills… it makes sense. Now we can have the tools we need to provide him the care he needs…only more. The sense of panic never hit. I smiled. S smiled.
Jack sat in the corner and said “pow, pow, pow, pow, pow…” for 17 solid minutes.
But it’s not the end of the world.
It’s simply the beginning of a world in which we have been given invitation to. I do like being invited to things! Far be it for me not to show up to an invitation-only party!
Now, if you’ll excuse me…I have to go get ready.
Whatever shall I wear?