Mother To Son
By Langston Hughes
Well, son I’ll tell you:
Life for me ain’t been no crystal stair.
It’s had tacks in it,
And splinters,
And boards torn up,
And places with no carpet on the floor-
Bare.
But all the time
I’se been a-climbin’ on,
And reachin’ landin’s,
And turnin’ corners,
And sometimes goin’ in the dark
Where there ain’t been no light.
So boy, don’t you turn back.
Don’t you set down on the steps
‘Cause you finds it’s kinder hard.
Don’t you fall now-
For I’se still goin’, honey,
I’se still climbin’,
And life for me ain’t been no crystal stair.
Hey Folks!
Originally, this article was going to be the big surprise article that would tickle the hearts of those under that big old ASD umbrella… but, alas that is not going to happen because my dear Ziggy was just diagnosed with Fibromyalgia.
There I was trekking through the valley of undiagnoses and how do I get that darn thing? In this valley I heard that Ziggy is very “atypical”, I read he is “possibly Apergers” 3 points away from Aspergers to be precise and just atypical enough not to rule it completely out. And, whose idea was it anyway to make a test of possibilities? Can’t we be reasonable for an exhausted parent and say “yes” or “no”? Oh my I smile at the absurdity. I was told about his almost adult leadership abilities and how he was any adults dream child. Let me guess because he is so well mannered and he does not ever disrupt anything for anyone and STICKS TO HIMSELF not making any adult have to work with him or for him as they would the typical nine year old boy? I know that!!!!!! Of course, one thing was a said that maybe I needed to hear, “You are on to something Mrs. Jones. I think you should have him further tested…” I don’t think that any mother is off when they have that “feeling”. And, mothers that have been there know what I speak of. In the middle of turning over stones both of my boys became ill. My little Christian (now 3 months old) took ill and was hospitalized for the second time for low oxygen levels. Mr. Christian was not helping at all because he is a very pleasant baby (similar to his brother). He never once acted as if he was in distress and actually became even more beautiful in the face the worse he got. By the end of his hospital stay not even crying during being aspirated. Making the nurses thank him. I would love to make it seem all rosey, but, two hospital stays four weeks apart and he’s barely three months- mommy was frazzled. As a matter of fact, I would have liked to have a squiggly font for the word frazzled just so you knew how frazzled I really was. I stood there alone watching as they probed and pushed and prodded that little body. The nurses stuck him like a pin cushion because they had not placed an I.V. while he was in the E.R.
Whew hew… I would have said I was surprised I had any hair after it was said and done… but girl that fell out the week before. HAHAHA! Yes chile! Right there in the shower, went to wash my hair and I looked as if I had groomed my brother’s dog. When I got out, my daughter sauntered in the bathroom and exclaimed, “Mommy I am so sorry for you….your hair…” For the record I don’t mean my hair broke off at the end, I mean the hair that came out showed the root and left nice shiny red patches on my head. So, this is the discoid side of lupus- G-R-E-A-T! HAHAHAHA! Yet again, I laughed what else was there to do. I was in too much neurological pain to think “Oh my crowning glory!” Muahahahahahaha! Honey, I was looking for some hair clippers ASAP! Get these devil strands off my head- each one felt like a syringe had been finely placed into my root. Therefore, we chopped it. The “we” I speak of was – the children and I. We unveiled a hot pink scalp that had been through all it could lupusy stand. I figured either cut it or watch my poor baby girl fear her mother combing her hair every day. I told her it would be fine and Ziggy said, he wanted his cut too. “If mom is going to be bald so am I”—therefore, we both had shiny little heads and admired how much we really do look alike. “Hell, Lupus can’t beat me!” I thought in my wild warrior woman voice.
I sat thereBALD in that hospital shocking all the doctors that had just seen me four weeks before. Now all alone. I was left with only my thoughts and a sick baby. My mother called to reassure me, my favorite auntie called to do the same. My brother and sister and law always go above and beyond… and I sat. Life sure does have a way of slowing you down if you don’t listen. I don’t mean I was doing anything necessarily negative in my life. But, I will say I was moving too fast to really just stop and breathe. Enjoy the moment of having a moment to enjoy. You feel me? I got up every morning and got the three children ready to run to school and did all that, that entailed. I wasn’t taken the best care of myself afterall, the fatigue alone was kicking my ass. But, I noticed the mother in me never failed. Whatever they needed I could use my last drop of strength and make it happen. Why not for myself? Boy when you are sitting and waiting and thinking. You can think about just everything don’t you? And, I did. I thought of that oxygen mask and how they tell the parent to put it on their face before trying to help the children. If mommy faints we all go down. Hmmm what a thought. Where was the flight attendant that was supposed to remind me of that? When I went to pick up my Ziggy on one of those last hospital days, I told him he just didn’t look right… now the see-saw was going down on Christian’s side because the prednisone, oral and inhaled were working and the see-saw was going up on Ziggy’s side- his meds had failed him. Why? This is nobody’s allergies. Now, I was thinking r….e….a…l…l…y slowly. Something is not adding up. I kept him with me for a few days and didn’t send him to school I wanted to just watch him. His walk, his talk… his symptoms.
Last year Ziggy was diagnosed with Pain Amplification Syndrome. It was a diagnoses I did not completely agree with. I felt the doctors were I suppose getting closer to what he really did have. It was better than hearing that all of his alarming symptoms were nothing. Or worse allergies. I am sure parents of children with special needs understand exactly where I am coming from on that one. We are hearing the doctors but, listening to our better judgment. They hand us a ridiculous diagnoses and we keep digging. Correct? We keep doing our own homework and passively assist the doctors until they get it. Because, baby we Got IT a looooong time ago! God bless us if we don’t believe that we must drug our children every time the doctors tell us we should. As I did not give Ziggy one prescribed pill- to make his “imaginary” pain go away. One huge reason was I never thought he was imagining it. As the diagnoses of pain amplification implies. I knew in my gut his pain and his symptoms were real and coming from somewhere for some reason. Not a fabrication in the least. And, if it was false, Mr. Ziggy needed an Academy Award if he knew how to act like that. Over the past year I taught him how to ease his pain with mindful meditation and reminded him of how to breathe (he use to do this as a very young child). I taught him to talk to his body. Something my mother taught me and hopefully he will pass on to his kin. This allowed his body some relief but also made his symptoms a bit clearer to doctors, when you medicate a child with no real diagnoses the only one walking away happy is the doctors and pill pushers. I wonder if I had listened would I have ever gotten to the real diagnoses.
This time it was a four week battle with with a sinus infection that turned into an ear infection. With that being said, by the fourth week and the fourth antibiotic- Ziggy began to fall down. Now, you know we are light chasers so a fall here or there was not going to shake us. As a matter of fact, he would hit the pavement sprawled out like someone tripped him and yell, “I-I-I-IM OKAY!” Then we would fall into hysterical laughter. Here I am bald and in pain trying to pull him up off that sidewalk. HAHAHAHAHAHA! We would be howling with laughter. Angelina, the five year old couldn’t even help because she would be in hysterics. I always told him, “Baby I still don’t know why God gave you feet…” and we would laugh more. But, behind the scenes I knew he had fallen too many times and that this was not an inner ear issue this was something rhuematological.
He awoke one morning and his eye looked terribly blood shot, this led to a bloody nose that was unbelievable to witness… this was the beginning falls and hemorrhaging bloody noses. Ziggy took this in stride… and me I needed my mommy. I called her but also made an appointment with Stanford Children’s Hospital who diagnosed him in the first place. At the appointment we went through everything that is Ziggy. A half an hour or more later… the doctor was heading for the door and stopped to ask, “how does he sleep?”. I answered, “He has never slept through a night in his nine years… I mean he does still lay there, he doesn’t get up and mill around- yet, you can hear him awake… maybe not for long, but awake nonetheless.” With a dipped brow the doctor stepped over to Ziggy and said nothing. The doctor began to press into his joints it seemed. To be honest I still don’t know what she really did because my son went from being this docile sweetheart who was drawing his favorite character Goku from Dragonball Z… to a wincing dancing machine. He hopped all over that table. Every light touch he looked like he was pop-locking. “What are you doing to him?” I said, startled hanging off the end of my seat. The doctor turned around and said your son has fibromyalgia. Now that made sense. She looked at him and said, “Ziggy this is not in your head. You are really feeling this pain…” When she stepped out I asked, “Zig are you happy to know that the doctors believe you now?” He looked at me and said in his deadpan manner, “I didn’t care if they believed me or not, I knew it was real all along.” I smiled and said, “So did I.” They scheduled him for pain management and printed out some info on fibromyalgia. He fell before we even opened the door to our home, and again yelled, “I-I-I-I-M Okay!”
Funny, as we sat there and the doctor had left us alone… there we were Christian a week exactly out of the hospital diagnosed with Reactive Airway Disease, he lay in my arms cooing. Angelina our trooper- picking at Ziggy, giggling and lively, Ziggy hurting like hell- smiled across the room at me and I a hot nuerological mess smiled back at him… then our smile turned up a little higher… then that uplifted cheekbone gave way to a light laugh… and then the realization that heck we are all messed up. HAHAHAHAHA! But, we are all in it together- really together. He said, “Thanks Mom for believing me…” I told him, “you don’t have to thank me, I’m momma! I know my babies… I just had to take my sword out and battle so they believed you…. Mommy always believed.”
*So parents and friends don’t give up! I really can’t tell you what is in store for Ziggy or me for that matter this year. But, in the knowing I can help him feel so much better, whether it be ASD issues or Rhuematological issues. Keep on believing your little one’s. Keep on pushing the doors open that “they” whomever that may be want to close on you, or never open in the first place. Because every child deserves the best you can offer, the best society itself has to offer. One day I will get that inspiring article that I wanted this to be out to you. Oh boy, you’re going to love it. I interviewed my own parents for this one. Much to their dismay. (And, completely to my delight _____________insert evil laugh here-muhahahaha!) One day, I will tell you exactly who this blogger is- and how she knows without a doubt a kid deemed “special needs” can succeed beyond her oops! Your wildest dreams.
Jah Bless You and your endeavors to create the world you believe your child deserves.
Love Always,
FreeShayla
freeshayla@live.com
