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.
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!)
My baby girl. A long time ago, I struggled to keep you inside me long enough to keep you alive. You always want to be first…to get something done before everyone else. You weren’t supposed to exit until mid-October. You chose your own birthdate instead.
9.9.99. Unique…just like you. Then: teeny tiny. Now: 5’6″.
So, today you’re 12. TWELVE. Where has the time gone? It seems like yesterday that I tried to kill you with a jalapeno (it was an accident, OK?) and you tried to eat the cat. What about the day I had to go to school because you drew a hippo on your desk with a Sharpie (because your teacher wouldn’t let you bring Boo Boo to school)? We’ve had Abba karaoke dance parties with your cousins, and held each other to cry when we lost Non.
Other things haven’t changed—you still eat bananas like we have a tree in the yard. Even as a baby, you had me read to you for hours on end…and now, you sit and read and read and read to yourself. You’re so empathetic and extremely helpful (seriously, I don’t know any other twelve year olds who can help change a feeding tube without batting an eye). You’re funny—so funny (you have the sense of humor of your Popeye….very punny!). This life we were given to share has been such a blessing!
Now you’re entering this whole new phase of life called puberty.
I know, I know–we’ve talked about it ad nauseum. You know the very graphic details of what is going to happen, but you don’t know the secrets to it. There will be days when life won’t be fun. There will be moments of anger and moments of heartbreak….but you have to go through these moments on your own (we all have to). Life is not perfect. Make the best of what the day brings you.
Puberty: It’s not fun. It’s not pretty.
YOU are amazing. WE will get through this together.
Some kids, they don’t get along with their Mom when they go through this puberty bit. I’m thankful (oh so thankful!) that you talk to me about everything….that you may not always be happy about what I ask of you, but you do it…that you remember that family is best. I could do with a few less eye rolls and a lot less trying to get the last word in on anything I say (in case you want to work on that).
And speaking of family….thank YOU for showing me what it means to be a True Mother. There are Mom’s out there who don’t care, who use their children as pawns in a twisted game, who manipulate. You taught me to stand up, fight, and prove to everyone that a Mother is the person who would do anything (really…anything) to protect her child(ren). I will never regret making sure that you and Jack are protected from as much ugly as I can (unfortunately, you never know when Ugly is going to call you up and ruin your day!).
Welcome to the next phase of your life, my sweet girl young lady.
I am so proud of you…YOU….the J-bird.
Just grab my hand…we will do this together. Always.
Today has brought some very painful things to the surface of our lives. Things that I don’t know how to verbalize appropriately—emotions I didn’t know I had.
The past 2 weeks, Jack has been struggling with his lungs. At first, it was thought to be strep..then pneumonia. Then, no one seemed able to figure anything out.
So, we were sent to see Dr. Lung. With our extensive history, she knows enough now to cut out the small talk and focus on the objective issues at hand.
After looking, listening, and reviewing, she sat down in the corner of her office. Her eyes softened (which I didn’t think was possible).
I knew the words coming forth were going to be things that I didn’t want to remember, but they would be important enough for me to never forget as well.
My anxiety was through the roof….truth be told, it still is.
She explained that there could basically be one of two things going on with my Jackpot. He could be aspirating his own saliva and every little bite of anything that he takes. He could possibly have some underlying condition that is causing his lungs to deteriorate which can be identified by some lab work.
Her true feelings are that this is an aspiration issue. We are trying some new medications to maybe help. One is to dry up his secretions, the other two are for aiding in lung function. She also ordered him a CPT vest. However, the long-term prognosis for his lungs is not good. We will most likely be having a bronchoscopy in early August for her to take a look at the lungs…and if he continues aspirating, he wins a trach. We have a referral for the ENT (the same one who did J’s ear surgery) to see what he thinks about all this.
So, I’m sitting there, sort of floating above my own body, and you know what I kept thinking?
I couldn’t even think. I was completely numb.
We left the office and headed to the lab to get his blood work done. It didn’t go well either. Jack kicked the lab tech. Several others were called in for back up. As I hed his flailing body so hard against my chest, feeling his tears run down my arms, I looked over to where J was sitting. She was trying to hide behind her book, because she, too, was sobbing. She was crying because she couldn’t stand watching her brother hurt.
My head is pounding. My heart is aching.
Yet, I am assured.
No matter what happens I know that Jack has been given a ton of love. I know that J will always be his advocate, friend, and biggest fan. I know that we will never give up hope. I know that this is still all a huge gift. I never asked to for perfection, but I believe that’s what I have.
Author: au·thor (ôthr)n.a. The writer of a book, article, or other text.b. One who practices writing as a profession.c. One who writes or constructs an electronic document or system, such as a website.d. An originator or creator, as of a theory or plan.(American Heritage Dictionary)
Within the walls of my home, lives an author. She is shy and quiet until you get to know her, and then she is funny, quick witted, and animated! She also possesses a very sweet spirit—one full of empathy; always ready to help.
Her name is Janson.
My daughter… I am so proud of her.
A few months ago, while at the GI doctor with Jack, I noticed a new magazine on the counter. Actually, it was a pile of magazines. It was entitled “Something Special.” I read on to find out that it’s a magazine for Savannah’s special needs families. They have all sorts of interesting articles and ideas. As I read on, there was an article about Cerebral Palsy, only in the title Palsy was spelled “Palsey.”
Being the person that I am, I could not allow this to be! So, I took the magazine, and came home to email the editor.
After some back and forth on the email, she asked if Janson would write an article about her brother for their section called “Our Special Siblings.”
Begrudgingly, and after much, shall we say “encouragement,” she wrote.
She handed me her writing. I read it silently. And then I cried.
I am so proud of her…and her heart.
(To read her article, click here and go to page 10.)
The text of what she wrote is here:
“My name is Janson and I am 10. Jack is my brother, whowe adopted. He’s 3, has cerebral palsy, and a feeding tube. Hiscerebral palsy means that he can’t walk very well so he rides in awheelchair. He doesn’t eat much so he has PediaSure through afeeding tube at night. His lungs are not very healthy because hewas born too early and because he aspirates whatever he eats. So,we have to be really careful about germs. To keep him healthy, I dohome school, which I really like. He also can’t talk very well. Wespend a lot of time at the doctor and at therapies. It’s nice to havehim for a brother because he likes to play with me. He really likesplastic animals and people. He isn’t as nice when he hits me. Heonly hits because he is frustrated when we don’t understand him, sowe all learned sign language. Even though he is not perfect, he isthe best brother ever!”
WOW! Can you believe you even managed to get Mother’s Day cards sent? Good JOB! Seriously, you have had a week, girl!
Mother’s Day has always meant something different for you, huh?
In the beginning, it was all about bringing a homemade card with a potted Dixie cup plant to Mom.
Then, it was about being unable to have a baby…and all the fear of never knowing what it really felt like to be someone’s Mom.
Janson, in all her glory, gave you that gift (and the fright of your life!).
She is becoming such an amazing young woman. That heart of hers is full to exploding with love, isn’t it? She nary says an ugly word to anyone, and she is full of life and hope. Just the way you wanted it.
And, she adores you. You’re each others best friend. Well, for now, at least.
You watched her grow and change–and you knew there was no way to have another baby.
What an entrance he made, huh?
Oh, I know he’s given you sleepless nights, worry, and fear…but he’s also strengthened your heart. He’s teaching the world what empathy is. He’s showing everyone what love truly is.
He is right where he needs to be…In your arms.
Happy Mother’s Day, Heather.
When I was in 5th grade at WLM Elementary school in Mayberry, PA, we got “the talk.”
See, we got split up, we did. The boys went with the PE teacher (and evidently, from all reports had a much better conversation about puberty than we girls did) and we were stuck in a classroom with the world’s oldest school nurse, Mrs. TMI. There were only a few dozen of us in 5th grade to begin with, and we all grew up together, so this was not going to be a big deal, right?
Mrs. TMI was approximately 94 at the time of “the talk” in November of 1987. She began the movie. I think it was called “Julie’s Choice.” We suffered, in awkward silence, as poor Julie started her period in PE and rushed to the nurse for “the talk.”
After the movie was over, you could have heard a pin drop. None of us wanted to look at each other.
I was ready to slap my Momma for not warning me that this was coming.
Alicia, bless her heart, was beet red (as was I—misery loves company).
Yet, our clear and absolute mortification was not near enough for Mrs. TMI.
She stood up, wiggled the crinkles out of her perfectly wrinkle-free polyester pants, pushed up the sleeves of her Thanksgiving turkey embroidered turtleneck-and-sweatshirt-all-in-one top, and said:
“Ladies, I’m going to tell you a story.”
I knew…I KNEW the world was going to end.
She proceeded to tell us about the time she started her period in 1896. There were no disposables at the time….and so on and so forth…and the “Big Fire done ate up her drawers”…and so on and so forth…
When she was finally done (2 hours later—during which we got to watch the boys have plenty of time outside playing—no, they were mocking us!) she handed us a paper to give to our parents and samples to go home and try.
I tell you this because I am scared.
I have no earthly clue how to break this all to Janson. I mean, she’s a bright girl and all…but I fear the actual conversation.
This could have something to do with the fact that I don’t have any girly parts and even when I did have them, they were broken?!
So, come on now…help a girl out!
How’d you find out? What did your mom say? Did you have Mrs. TMI at your school?
I need a good laugh today.
*** P.S. Janson, I love you. Someday, you will laugh at this too!***
For some, it’s the secret addiction to ice cream at 10 PM—others, it’s much darker.
Some cover secrets with sugar and spice, to make them seem less painful(which for me is like rolling brussel sprouts in powdered sugar to make them taste better—it doesn’t work!).
The truth remains: we all have secrets.
10 years ago this week, my life changed forever when I gave up my uterus, and her playmates: ovaries and cervix.
I cannot fathom that it’s been 10 years.
It seemed like the right decision. I was sick. Really sick. The endometriosis, on top of recurrent rupturing cysts, had made my body weak. Pieces of endo were grabbing my lungs. This was kind of a bleak situation.
I learned the words: Total Abdominal Hysterectomy with Bilateral Salpingo Oophorectomy. The surgery was scheduled.
So, what did I do? The night before surgery, I drove my happy hide to Winn Dixie and bought a cake. I had to spell “h-y-s-t-e-r-e-c-t-o-m-y” to the lady in the bakery, so she could write “Happy Hysterectomy” on my cake.
As if *I* wouldn’t do something like that!
Upon admission to the hospital, we were told that they were going to try to save my uterus, and maybe an ovary. I did, however, have to sign for a full, radical hysterectomy, if what they found was worse than they anticipated.
I woke up with 37 staples across my abdomen.I counted them every time I woke up from my pain killer haze. The gravity of the situation hit me hard: I had no internal woman parts. I literally felt hollow.
For months, I avoided all situations where there could possibly be a baby. Even though Janson was just a wee babe herself. I didn’t want to see pregnant women. I didn’t want to see cute little baby clothes, and blankets, and all the things I could never look forward to having again.
It became “the excuse.” Family claimed my hysterectomy was the reason I was “acting out.” Friends avoided me, knowing they were going to make me sad with their rapidly swelling bellies.
But no one ever took the time to ask me how I really felt.
Yes, I was sad. I was moody. I felt out of place, as the only 23 year old on the planet (so I thought) who had no Ute. But I was also angry. Really, really angry.
I listened to people tell me all the time: “This was for the best.”
“Some people aren’t meant to have children.”
For awhile, that was enough. Enough to keep me sad, depressed, and hiding my true emotions. But, I was getting more and more angry.
My anger was seeded in a society that looks at women who are barren/infertile as lesser citizens. Having a uterus and procreating is clearly the only thing worth doing in this life (did you hear my eyes roll?). Many people are against women attempting in-vitro because it’s “not natural”—women are just supposed to accept their fate and move on. I disagree…there is a reason that such a thing was discovered, and I think it has a lot to do with Divine Intervention!
Then, we adopted Jack. He threw us for a completely different loop. Our adoption is definitely not a lesson in the perfect adoption triad…or anything remotely close to that!
I still, and will probably always, long to hold a baby. My baby.
I may be envious of all my friends having babies.
I may daydream about tiny diapers and newborn reflexes.
Yet, I wouldn’t change a thing.
That’s right, you heard me!
I wouldn’t change a thing.
All the physical and emotional pain has been totally worth it. I would never be the person I am today, had life been easy. I would be just like You, or You, or even You. I might be the person that says ugly things to women that can’t bear children. I might be the woman that can’t look Jack in the face at the mall. I could be so involved in my career that I don’t listen to my children. I would miss milestones. I could put so much stock in life and not enough stock in my marriage. I would have never known the joy that comes from heartache.
That, my friends, is my secret.
I think I may be healing….