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.
Yesterday, we had our monthly visit with Dr. Lung.
To say it went well would be a big lie. To say it was terrible would also be a lie.
It just was.
Although, truth be told, I’m pretty sure I had an out-of-body experience.
She reviewed the lab work and testing done on Jack. He is fine that way. There are no underlying conditions causing his lungs to be so terrible. Therefore, the true root of the problem is simply that he cannot swallow (even his own saliva) without aspirating.
Was all this a big surprise? No.
Dr. Lung sat across from me and actually teared up. This woman, who I’ve never seen crack a smile let alone cry, was genuinely upset. I reached over for J’s hand, as if my poor eleven year old was going to help me hold it together. Heck, she was hiding behind a book so as not to hear or acknowledge what was happening.
It was then that this specialist began to talk to me about palliative care. As she spoke I was two places at once. I was there, very present, listening while nodding my head and breathing deeply. I was also elsewhere, in a pair of scrubs, next to the bed of a patient, helping a physician explain palliative care to a family. I was once in this doctor’s shoes. I knew how hard this was on her, and I was feeling for her.
So, then I’m like, “What is wrong with me!? Snap out of it and pay attention.”
Back to reality.
For a 4-year-old.
I couldn’t even let that sink in without feeling sick.
Basically, this means that we give in to the aspiration. We can’t fight it anymore. We will treat the symptoms (like, when he gets sick, we give him antibiotics) but we won’t keep him on the high-powered stuff to try to make his lungs better. They can’t get better. They are what they are.
He is who he is.
That’s what I’ve been fighting for his entire life. I’ve just wanted him to be him. For society to see him.
So why was this upsetting?
Dr. Lung and I talked about how to keep Jack relatively healthy. More hibernation during sick times of the year, less hanging out with the general population. Plenty of cuddling, extra heaps of prayer.
It’s going to be fine, right?
The world continues rotating on its axis. People are going to parties, meeting new friends, going to jobs, falling in love…. We muddle through.
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.
Jack had his big bad Nissen test on Thursday.
Upon arrival, we were met with the usual—”There’s our man, Jack” and other such greetings. It’s really awesome that he’s so unforgettable, but I’m not a fan of him being Mayor of the hospital.
After we checked in, got his magical bracelet, and shuffled down to radiology, we got put in a room. They wanted me to change Jack in to a hospital gown, which was about as much fun as wrestling an alligator rubbed with Crisco. Once he had been appropriately reprimanded, threatened, and put in time out approximately 98 times, he was ready to start the test.
They loaded Barium Boy with his favorite element. And we watched the screen. Jack actually thought that part was cool. He liked seeing him tummy on TV!
We tickled him, rolled him around, bounced him—and then, there was a little regurgitation in to his esophagus. Just not enough to say his Nissen is failing. The radiologist looked at me, looked at Jack, and looked away.
We all knew this was not the news we wanted.
I mean, I wasn’t a huge fan of having him have another major surgery.
But, the fact that his Nissen hasn’t failed means only one thing: he’s aspirating on his own secretions.
He is so talented, dontcha think?!
This is actually really not a good thing.
No parent should have to choose between a decent quality of life or a longer quantity of life for their child.
Non hated–even hate isn’t a strong enough word–Jack’s feeding tube. She would ask me constantly if we could “get rid of that thing” yet.
This would hurt her heart.
It sure hurts mine.
Jack will not be receiving a white Christmas.
The Weather Channel picked someone else.
Which is fine…I mean, it was a long shot anyway. It’s just hard.
Hard–because I have a 4 year old telling me every day that he wants Santa to bring snow from the sky. I’m trying to come up with some alternative way to get snow to him, but so far have come up empty handed. I think perhaps a geography lesson which includes our proximity to the equator might be in order!
So, until I get over being bitter and wishing that the Weather Channel gets only underwear for Christmas…I offer you probably the most amazing, heartfelt, beautiful holiday tribute I have seen on the internet in my entire life!
Bookmark it…you’ll be spending plenty of time there…
Neil’s Christmahannukwanzakah concert…the 5th annual no less! (Go give him the love he deserves for doing this!)
**you might just see me and a certain red-hatted boy singing about a hippo**
I’ve been quiet.
I’ve been praying.
I’ve been hoping.
And now I can tell you the truth.
2 weeks ago, my husband applied for a new job. It would have been the absolute perfect situation for our family:
Back to FloridaNear Children’s HospitalsNear all our family Better opportunity for SOur friends close by…
Yesterday, S came home devastated. He was not blessed with the job. We were not blessed with the only thing that we have prayed for since Jack’s birth. (We shall not go in to my big ol’ fight with God over this, OK?)
My husband is hurt. And so am I.
He’s been very loyal, and he’s a wonderful guy. He’s the guy that drives to work in the middle of the night to smooth over hard feelings, rather than simply talking on the phone. He’s the one who volunteers to help everyone else out, just to get some extra training or to learn something new.
I don’t know how to make this better.
So, I wrote this whole post about mothers and animals and the zoo…and then it fell apart. It went from a really great idea to shambles in a few short paragraphs.
I think that’s an apt metaphor for life right now.
We had a great weekend! We went to Tampa to see my nieces play soccer. They are growing and changing so fast…moving from baby to young girl (breaking Auntie’s heart in the process—who said they can grow up?). The girls played and swam and giggled their little hearts out.
I have so many different emotions regarding Mother’s Day. Emotions that are hard to put in to words. The husbands got up at O’Dark Thirty to go fishing.
Somewhere around the time the sun thought about rising, I opened my eyes to see Niece B hovering over my face. She informed me to stay in bed or at least not go downstairs. I agreed.
I then met Ronca in the hall to eavesdrop. We couldn’t hear much, but we smelled toast.
Toast…good. They can’t burn the house down, right?
Wait! Wait! Suddenly, we were really awake. There were three little girls cooking in the kitchen—ages 10, 9, and 6. HOLY MOLY!
As we stood there giggling, we smelled something else…EGGS!
Eggs? Eggs require cooking. Ronca has a gas stove. We were fairly sure the house was about to implode.
Footsteps…we scatter…Niece D informs us that we need to have a seat in the playroom so we can be treated to our fancy schmancy breakfast.
As we are oohing and aahing over our Gourmet Meal Fit for a Queen, I asked J how they made the eggs without using the stove.
Niece B explains that it was easy—they used the microwave (OF COURSE! The microwave!)
I asked how they knew what to do…
J says, “I Googled it!”
So that was the height of joy (and OK, Ronca and I laughed until tears rolled). Those girls were so proud that they did something for their mommies for Mother’s Day. They were absolutely unashamedly glowing.
(We must be doing something right, right?)
However, there’s another part of me that aches.
On Friday, we got Jack’s wheels.
We arrived at the store and helped unpack the boxes containing these little tiny wheelchairs. We got to choose which one we wanted…we lifted, sat on, pushed, pulled, and test drove a bunch. We filled out paperwork, and talked about the warranty. We finally settled on our choice, and left the store.
It was then that it hit us.
This week (April 24-May 1) is National Infertility(IF) Awareness Week.
I am infertile.
What IF I never feel whole or like a “real” woman?
I have a scar that runs the width of my abdomen: hip to hip. I touch it each day as I shower, or get dressed. Most women have similar scars post C-Section. I didn’t have a C-Section, I had a hysterectomy. A doctor got to slice my 23-year old abdomen open and retrieve my eggs, tubes, cervix, and uterus…and with that, all hopes of being a mother to a biological child.
So, for the past 10 years, I have never had a period or a cramp. I no longer need to go to the OB-GYN for pap smears…after 5 years, they no longer check. I mean, it’s not like there’s anything in there anyway.
But I still hurt. It hurts to hear people speak ill of pregnancy– “Oh, did you hear about Sue? Her 16 year old fell pregnant? What a pity?” Not a pity in my book. I look at pregnant women and wonder what it feels like to be normal and pregnant. How it must be so nice to have a mundane, routine pregnancy…just getting weighed and measured and peeing in a cup.
I want to pee in a cup.
What IF our government continues to pay for babies that end up abused, but they never help a woman adopt or conceive?
Personally, I think this is the greatest travesty of all.
Let’s look at Jack. (Remember: this is all info we found out after the fact) His Birth Mother felt the need to snort up (a ton of) cocaine on a daily basis. She birthed Jack at 27 weeks. He spent weeks and weeks in the NICU. Then, she terminated her rights, because the state was going to take him away from her. She never had to atone for her sin. As a matter of fact, the state of Virginia paid for her hospital expenses.
And we—we paid oodles of money for a child…a child who we thought (and were told) was well, but turned out to be not so well (who ended up giving us the biggest gift of all)…who we will be paying for forever.
Or until he hits his lifetime cap on our medical insurance and then he won’t ever have medical insurance.
Because that’s fair.
And I really don’t want to spend any more time at the Social Security office.
What IF there are never answers?
What IF, despite trying, we cannot change this world for the sake of one child?
What IF by following this path that life has given me, I change just one person’s heart? I just want to stir one heart…and that heart could stir another, and another…Then, my friends, hope will take wings.
So…I don’t have a lot to say really. I’m kind of in a really bad mood, and I don’t want to dump that on the universe by kvetching too much.
Jack—ugh. This child! I took him back to the doctor today since he was super snotty, running a fever, and gaggy. Turns out he has drug resistant strep…which makes me really nervous.
Seriously? He’s 3. He has pretty much lived the past 3 years on antibiotics. Drug resistant. What does this mean for the rest of his life? How is this going to impact him?
My biggest fear is losing this little life that we have fought so hard to keep alive.
Extra prayers maybe?
On the other hand, the doctor FINALLY wrote us a prescription for the overnight pulse ox. That is great!
where the heck did I hide my jelly beans?
Normally, Monday mornings are a zoo around here!
Get up, breakfast, everyone dressed, homeschool begins, and we’re out the door for Jack’s PT and OT.
And here I sit on the couch.
Jack is having some weirdness. He’s having a very difficult time functioning. He just can’t seem to make his body do what his brain is telling it.
So, he screams.
Blood curdling screams.
I’m talking screaming-like-someone’s-trying-to-steal-your-favorite-chocolate screaming– for awhile.
And by awhile, I’m not talking 5 minutes. I’m talking the time it takes to get diapers, Easter supplies, birthday gifts, socks, shoes, clothes, and sunscreen at Target.
Before you judge… This isn’t merely behavioral. We don’t often leave the house. Jack has been on medications for his weirdness for 14 months. He physically and mentally cannot control what goes on between his brain and his body.
It just about breaks my heart to admit that.
Our appointment in Tampa isn’t until August. The doctor here has been called 4 times since Thursday, and he hasn’t bothered to call back. You know, that’s how we roll here in the Savannah. “So what if your kid doesn’t sleep, screams constantly, and tries to hurt himself constantly? You’re not as important.”
Which depresses me.
My feelings against the Savannah medical community grow darker with each passing day.
After our Target foray, Sebi looked at me and proclaimed that watching Jack be like that was no fun!
I was torn between bursting in to tears and beating him to death.
This is what happens in our world.
And I really don’t know how much more I can take alone.
(So, who wants to help find Sebi a new job? Hmmm? Anyone?)
[also, I don't mean to be a whiner. I'm tired, can't sleep and worry constantly. I'm just cranky.]