We long to be real, to know others for who they are, not how they want to be perceived. And yet we are taught to be STRONG, to barrel through life as if we are modern day superheroes–impervious to the battery of storms that come our way. How many times have I read, “You’re a strong mama, you can do it” on Facebook to those who are expressing horrific emotional pain or loss. Really? Don’t be vulnerable? Don’t feel? So be a superhero? And if you’re not, then what? Vulnerability does stink, but it’s also a breath of fresh air, a kind of human-ness we long to experience. I’m not saying don’t be encouraging, I’m just saying there certainly seem to be times when being told, “you’re strong” is far from reality, and we need to know that it’s OK. I read this yesterday, “Sometimes I get tired of being stronger than I am.”
This is for you moms–like me– with medically compromised kiddos who just might be able to relate. Let me just speak to the here and now. My every waking moment is involved with both motherhood and care giving for a munchkin with Noonan Syndrome. I admit, it’s hard.
There are a myriad of emotions that I go through from one moment to the next, with Rhyse. One day good, next day not. One good doctor report. One not so good doctor report. One diagnosis improving, two new diagnoses added to the list.
Every night my husband and I squeeze Rhyse into a Providence Orthosis. He’s already hooked up to a feeding pump, “charging up” for the night, unable to get in and out of bed on his own accord–he’s three. It’s likely we’ll be doing “this to him” for the rest of his childhood. And every stinkin’ night I feel like I’m squeezing more than just his body, I’m taking away apart of his childhood. And you know what that part is? Pajamas. Up until his scoliosis diagnosis six months ago, I absolutely loved buying him jammies covered in fire trucks or police cars or monster trucks. And he LOVED wearing them. Little boys and their cars and trucks and tires…oh, my goodness. And that rite of childhood is gone at three. The seams are too thick. Instead he has to wear special made t-shirts. And he hates them. Because they aren’t very special at all. See, the tears are threatening to run already.
Two years ago Rhyse had C-diff. His colon has not been normal since. And no one would listen. I called GI again and again. And again they said, “Give him a probiotic, or have you tried fiber?” And again I would say, “there’s no change, something else is wrong.” For two years. Fast forward to December 2014. Rhyse was losing weight again. And much more, losing more of his share of stuff in his diaper. As in 18-25 runny diapers a day. And still GI put me off.
We live twenty minutes from a children’s hospital, yet I felt one department wasn’t pulling their weight. I had to come to the painful and emotional conclusion that I had to go somewhere else. That decision didn’t come easy. I was angry that I couldn’t get help right out my front door and yet I felt guilty for “not trusting” the doctors. I know how frustrated many doctors must be with all the googling and self-diagnoses these days. But Rhyse wasn’t doing well, was once again needing to be hospitalized for colds and flus and pneumonia’s throughout the winter, and in the end—still the horrific diapers. And no one was addressing the underlying issue–the gut.
After waiting a few months for a referral from Rhyse’s PCP we received news of an appointment with GI at Mott’s Children’s Hospital at University of Michigan. Two and a half hours away. It was most exciting, but again, I struggled something fierce with guilt. With two other children, logistically, the running back and forth wouldn’t be easy. And running back and forth with a three year old who has good spats, but even more bad spats of gut pain and burning bum, was even more challenging. If he wasn’t puking, he was pooping–again and again and again.
In preparation for the travel I did something completely out of my nature, I asked a gal I had met at the Noonan Syndrome Conference a few years earlier if she lived near U of M, and if so, could I stay with her while in Ann Arbor. Can I just tell you she has been a light in the darkness? She and her husband and son opened their home to me–as is–again and again and again. No frills. No expectations. No “you can’t see the real me.” Nicole Reid, you are such an amazing blessing to me. In a time when I have nothing left to give, you keep giving. Now why can’t we live closer?
It has been eight months since our first appointment with GI at U of M, not to mention two different doctors as the first one left the practice. In the meantime complete burn out on diapers. As in I truthfully didn’t think I could keep changing diapers over and over and over one more day. And the financial impact has been quite evident. A few weeks ago a couple of family members brought some meat and toilet paper in a week we just couldn’t scrape up enough in between pay checks for necessities. Financial strain. Emotional depletion. Feelings of helplessness in regards to Rhyse’s health. Lack of any sort of social life. Yea, thank the Lord for the Lord. Because when all else fails, He doesn’t. Just when I thought I couldn’t face another diaper, He would find a way to remind me nothing is hopeless. But life can get minute by minute by grueling minute. Diaper after diaper. Blood test after blood test, and yet another blood test. We had to rule out ALPS, autoimmune disorders, cancer (he has a crazy tumor/mass that runs the length of his spine and into his gut), and food allergies. He had an MRI, CT, endoscopy, colonoscopy, flexible sphig, wet bronchoscopy, dry bronchoscopy, and endless office visits. Meanwhile my three year old was down to 25 pounds and dropping. Despite growth hormone therapy his growth stopped. How does that feel? Like your child’s childhood is crap. Like Noonan Syndrome is the worst enemy on the planet. My heart knows that isn’t true. But my emotions couldn’t be convinced.
Finally, five weeks ago Rhyse was put on a steroid (prednisone). It’s given him an edgy side that isn’t so fun for anyone, but for the first time in over two years, he’s not in pain. His gut isn’t spewing out stuff with such force no diaper can contain–even HAZMAT might not be able to handle it! The rectal bleeding has stopped, and he’s gained three pounds! That’s as much as he gained in the entire 12 months prior! And last week Rhyse had his first IV infusion at U of M, and there are many more to come—I’m told for the rest of his life. And I’m ecstatic, and I’m deeply grieved.
I carry deep-seated grief in my gut because he’s suffered with this Ulcerative Colitis for at least two years, and I didn’t push hard enough to get him help. He’s lost months and months of development, missed over 50% of preschool last year because of UC, and once again lost a valuable part of his childhood. And yet he’s a happy, loving, extremely confident little guy. Yesterday he leaned over to me at dinner, turned my head to him–nose to nose–and said, “You’re the best.” Three months ago he had only a few intelligible words, and no sentences. Since treatment for UC has begun taking affect, he’s talking like a three year old–and its mind blowing. All the words and feeling and thoughts that have been trumped by a sick colon are tumbling out so fast I can hardly keep up.
We have scaled one huge mountain, and now I can’t help but wonder what the next one will be. Right now I don’t think I have the energy. But yes, I do have to “be a strong mama.” But if I can be vulnerable for just a second I will say this: I’ll never get “used” to it. I will always have all these wretched emotions scrambling around inside from one day to the next, because he’s my son. And I can’t make it “alright” for him. I can’t kiss it better, or say “it’s almost over.” And so the ups and the downs, the grief and the joy, the fear and the pain are in a constant battle for my mind. My heart is the Lords. I have peace in my heart. I have joy in my being. But this earthly journey gets really dirty some days!!