“We all want things to stay the same. Settle for living in misery because we are afraid of change, of things crumbling to ruins. Ruin is a gift. Ruin is the road to transformation.” ~Elizabeth Gilbert
It’s been a very long time.
I haven’t been writing at all. I haven’t been doing much in the last two years other than research/studying, delving face first into the abyss of Autism Land. But it’s Autism Awareness Month and I’ve been trying to get my words together to spread a message of reality. Facebook and Instagram being the “highlight reel” they actually are, don’t do justice to the parents & loved ones that are neck-to-neck with it day in and day out. You either have folks that complain and use social media as a sounding board to this hobby, or you have people who only want to show the sunny side-up version of their life, and sometimes you never really get a true picture. I feel as though the masses need the realtime truth if we are ever going to allocate funding where funding is so desperately needed: the highest rising childhood epidemic of our time. Coincidentally autism is also the least funded. Although we’re getting a partial concept, having an “awareness” month will hardly do the work; what we need is ACTION. We need Autism Action Month.
Our toddler, Aspen is almost 4 years old. We were completely oblivious until he was around two, then the dreaded “autism” word became our daily language-source of worry-constant torture. When we first received the diagnosis of autism I couldn’t gain a clear picture of 3 inches from my face. I didn’t know up/down or sideways, and certainly didn’t realize I had been placed ever so gently on a path that had forever changed my point of reference with that shiny golden compass we hold dearly. I was lost, stranded in an African desert of despair, hopelessness, and disbelief.
Now Jasper is not quite two but I’m wiser this go around and autism hasn’t crept up on me in a single nanosecond… no I’ve been robbed a little each day with worry that he would get it since his birth. And I’ve had to bear witness and slowly, agonizingly, gaze into the abyss that he is leaving me for a little bit everyday. It’s a constant, every single day, event that you know is happening and you desperately almost to the point of insanity try to reverse. When Jasper was a baby as I was nursing him, lovingly longing in his eyes, I would say to him almost as a lullaby: “don’t leave me Jasper…Please don’t leave me sweet baby.” And I am irrevocably saddened to tell you that he is, world. I cannot adequately convey the depth of sorrow I feel on a cellular level. We are awaiting official diagnosis. Now that makes two.
I don’t even know how else to convey that or write it poetically. True, us parents try to find the “gift” in this perplexing disorder, but that’s just another way we’re attempting to grapple with the constant frustration; trying to feel a sense of control in the seemingly uncontrollable. You never know what you’re going to get. Anxiety can explode out of nowhere; one night Aspen will sleep like a little lamb, and the next he’ll awaken at 2 a.m. ready to rock n roll; some days he literally stares into our eyes, and still others he dodges them darting back n forth as if the moment of contact when our eyes meet his would cause him to implode from impact. Some days he’s cuddling, sweet, plays with us and perfectly content; Some days he cries or whines almost the entire 24 hours with little relief.
I can’t tell you what days differ from the next. There is no causation that we can ascertain. It’s just the roller coaster we cannot seem to get off. Everyday unpredictable and it’s a fine lesson for control freaks.
I don’t get to listen to my boys sing that damn “Let It Go” song three thousand times while I video and spread on Facebook. I don’t get to have back and forth conversations with them about why the sky is blue and what makes up bugs and frogs. I don’t get to sit down and have a regular meal with Aspen since he will only eat three fruits and I have to hold him down three times a day to syringe chicken broth so that he will get SOME protein/ fat along with that fructose.
Aspen has never gotten excited over birthdays or Christmas, and you wouldn’t even know it was any other day in his world. There are no play dates or fun days at the zoo since the joy of just running is favored over elephants and peers anyway. There is no going out to eat at a restaurant or ordering in when you don’t feel like cooking because they have a special diet that comes only from the kitchen, and the heart. Autism to us has meant no words or dialogue, and a sweet period of time during toddlerhood that will always be remembered by all the therapies, tests, doctors, forcing supplements, endless reading, sleepless nights, gross mental and physical fatigue, not to mention watching relationships falter either with your significant other (psychologists give a new divorce rate to couples with autistic children: a staggering 80%) or with relationships to family members and friends.
Most people have a hard time understanding our lack of commitment to events, or why we cannot go to many places given the situation with our kids. Then there are friends and family that feel helpless or fear what to say, or do, or how to act around the boys. It’s actually cute to observe how little toddlers can be intimidating to adults who aren’t sure how to interact with them. Some people don’t want to be bothered with these struggles, or “can’t handle them” and we see plenty of that in friends/family too. We have a very teeny tiny dwindling support system. We have no real social life anymore and I feel the void of friends that have slipped or stepped away. Of course you know it feels like everyone’s life is moving along quite wonderfully, and ours is trapped in some kind of vortex where we see little progress for big output.
Although my oldest of 15 is not autistic he’s a casualty nonetheless. He doesn’t have the mom in me that he grew up with: the one that did crafts with him, talked endlessly and lightly with him. I would read to him every single night; I actually had ample time to devote to him, his growth, his school studies, his fears and functionalities. I feel so robbed of time and connection with him because not only does he have two brothers on the spectrum with therapies/ schedules/ENDLESS “to-do’s,” but also he is a teenager in high school who now wants less to do with nurturing our mother-son relationship. And my time is running out before he leaves the nest and this precious era in his life is over.
Sure there are beautiful and lovely days and experiences with our boys. I don’t mean to taint the light with this dark. But I also don’t advertise or show these dark aspects of our life. I don’t air this on social media because my pride and spiritual evolution want to keep me thinking I shouldn’t. It’s that damn highlight reel thing again. There is a very small minority of people I actually do divulge the hard reality to. And this life is hard. It’s just so incredibly difficult.
I know there’s meaning. I know this is the school of life, and I’m descending the caves of spiritual depth. But the way is long, and I can’t imagine doing this marathon for the rest of my life. The gift is inherent in this after all: I cannot live for the future anymore, only the present. The future is too scary a prospect to view from this vantage point. These boys have shown me the way and the light into my own heart, and I AM grateful for this. There are also a million other things in a million other ways I do feel truly blessed to be mother to all three of my children. Even if I knew autism was in the cards, if I had it another way with another child, I still wouldn’t hesitate to sign up for the struggle; I love my children so dearly.
But autism I do not. And I’m ready for a healing to occur. If you feel so inclined, please say a prayer, an intention, or a meditation for my boys and for all the children and loved ones of those children affected and afflicted with autism daily. Send them your love. You never know what people go through behind the scenes of that highlight reel you see.
To honor this month I decided to turn the camera onto my boys to document what autism looks like through my lens. Enjoy 🙂
There is a local nag going on. You might have heard of it. It goes a little something like this: “why don’t you ever come over…out…here…visit…hang…text…Facetime?” It is the voice we hear from family and friends a bit too well and at times too often. To preface, let me say that we are loved. Blessed and loved and so very grateful. I have a dear friend that also helps me with my boys. I have a supportive mother and father who adore their grandchildren. My brothers adore my children. My extended family in Jacksonville love my children, and we have so many people who genuinely and inexplicably cherish our little family all the way in Oklahoma too. We. Are. Blessed.
But most of the time I just want to enjoy myself, my partner, and my kiddos in our own little comfy home where the little ones can be as wild, ecstatic and cumbersome as they need be. You see, as much as people abuse the privilege of blaming events or occurrences on their children as to why they couldn’t make it to something, there are also parents whose situation does warrant a bona-fide “get-out-of-whatever-social-situation-free-card.” We are card-carrying members, folks. And in reality you might be glad we are.
I have a teenager that is good, calm, respectful and even understands the meaning of social graces. But the good news stops there. Because I have two absolutely adorable, but incomprehensibly ridiculous toddlers… one, Jasper Blu 15 months old, and Aspen our little sweetheart of three with autism that sends himself into tailspins and marathon runs through a house no matter how big or small. He gets sugar-highs without having sugar; olympic pole vaulting over furniture, and an impressive attention to detail that involves anything electronic with lights to repeatedly turn off and on for three thousand times, is small and surely choke-able, or breakable in any way– and this is the funnest of course. Anything that goes “CRASH!!” and “BOOM!!” is pure raw entertainment that no toy can match. Jasper follows suit behind big brother, picking up all those bad habits but smiling in that way that wipes it all clean in a millisecond. But of course that’s for us, and understandably not for you.
One time, before we really believed (but were already told) that Aspen had autism we were visiting a friend of ours with an affinity for over-priced home decor. She was, we will say, tolerant of our rambunctious boy’s energy. But one moment he got away from our sights and an eternity slipped in between the span of time it took for our sluggish selves to out-run a toddler toward the big kahuna: a large clear glass Crate and Barrel vase that was sitting on the tile of a fireplace (and seriously, WHO pays $150 for a VASE!). The perfect recipe for a spectacular “CRASH!!” that absolutely thrilled Aspen… and I believe took everything my friend had to keep her pricey cool. Our friendship slowly disintegrated…
It is exhausting to say the least, in going over to other people’s houses. We take turns with kids like tag-teaming in a wrestling WWE match, constantly following Aspen around, taking things out of his hands, redirecting him out of rooms, slowing his run, bringing him down from furniture, and pulling objects out of his mouth. Jasper in typical baby exploration is following suite and it is so tiring to say the least. My mother proclaims every time this gets brought up that she “Aspen-proofed” her home just so that we could feel comfortable coming over with him and be able to relax. This means so much to us. It is rare and we certainly don’t expect others to do this for us. It is kind. But when we are deemed anti-social it is either because Tiffany works like a dog all week-long and is pooped or because I run through 3 counties four days a week driving to therapies and running all five days somewhere; ABA therapy, speech therapy, occupational therapy, Pre-K, picking up oldest from school, football practice for him, endless errands to run, doctor’s appointments galore, and the list goes on and on. I simply want to relax in the safe cocoon that is our home. If you want to mingle why not come here where it’s easiest for our little ones? This is the open invite. Your house is too pretty to be broken…. too quiet probably for the horse race my son runs every night gallivanting joyfully through the house… there are bound to be wonderful colored objects or glowing beaming electronics… and Aspen and Jasper will gleefully devour them with their cute chubby baby hands. 🙂
The busy accidental anti-social also extends to texting. Suffice to say I am forgetful. And I would like to formally apologize for my tardiness in getting back to you in text. I’m reprehensible in this area… I totally get that. I’m horrible at returning emails too. It’s just the last thing I think of when remembering to-do lists in my head, writing it down in my planner or on the 3 dry-erase boards in my house deemed just for my flaying memory.
Please know that we would love nothing more than to take part of your social world with our family. It can get very lonely. Please know we long to be a part of, and to enjoy our family and friends fully. For now, that is, we have to do so in small increments, “leaving the party” early or not being able to at all in some circumstances. We love you all the same… and appreciate beyond words you loving us as well. Thank you for your understanding too.
“Let your hopes, not your hurts, shape your future.” ~Robert H. Schuller
I have been meaning to update this blog for such a long time now that the blank page of all I need to say stares at me in utter bewilderment. Too much to say, soooo much has gone on. I’ll just start with the general updates of how our little family is doing.
Elijah is about to start high school in two weeks and my heart just stopped a moment in that type. I cannot believe I will be letting go in faster layers in the few short years to come. He is in football and made almost straight A/B honor roll all the way through his middle school journey. He’s just as sweet as ever and likable by all, but very hard on himself and will often give up at the mere thought of strife. I hope I can help shape this in him. He is an extraordinary person. Getting him in the habit of doing his chores and even brushing his teeth is a whole other blog post, and suffice to say I don’t understand the teenage brain… I cannot believe I lived through it myself, fully clean.
Aspen is three already and will be starting a special needs Pre-K in 2 weeks. The pattern that he seems to have is “progress-progress-progress” then “stagnate-stagnate-stagnate” and at this moment we are progressing forward. The other day as I cranked out bubbles from a little machine he said, “buhh-ble” in sheer delight. I thought I would collapse I was so ecstatic! His last period of stagnation was just about 2 weeks ago that seemed to last an eternity… so we are in a very exciting phase at the moment.
Jasper, our bright little dimpled star, who is at present 14 months old, continues to capture everyone’s heart. He is quite an opinionated willful baby who is also very joyous and care-free. I wish I could say he is meeting his milestones with a zest but truthfully I have been overly worried about him lately because he seems to be lagging behind in quite a few speech and fine motor areas. I had stopped breastfeeding him for roughly ten days to go on hormone therapy, which is not allowed while nursing. I thought he would be fine since I’ve diligently breastfed him since birth, but I started noticing very subtle differences with the important one being his lack of response to his name being called. Before when his name was called he turned/looked around 8 times out of ten. After I quit breastfeeding this went down to about 2-3 times of ten. He is only saying “mama” with no other emerging or spoken words. He does not point to things, wave or other gestures. These are delays and indications of possibilities I no longer want to give attention to because I feel it calls it forth in the universe, and I say “no-thank-you.”
Jasper now is going to speech, occupational and physical therapy and we have re-started breastfeeding. Aspen is going to speech, occupational and ABA behavioral therapy. Needless to say I’m overwhelmed and mama goes to therapy too. 😉
My relationship with my significant other has been quite strained and broken through this process. As mothers we feel it’s our nature to put our children first, foremost, and utmost and this certainly rears kids who know they are loved. But I’m also viewing another angle that at times I have to put my own needs above theirs, and even their other mother and our relationship. We happen to be extremely blessed with two people in our lives that never seem to mind babysitting our special boys and never even ask us how long we’ll be when we leave… my best friend who happens to be my ex sister-in-law and my 15-year-old son’s father who has a knack for kids and they have always had it for him (as strange as it sounds we have maintained a good friendship these past 15 years despite not being together for 14 of them)
The family business is thriving under Tiffany’s diligence and hard work, and due to the increase in issues around the house I’ve had to slow down my yoga training to complete next year instead of November. When Aspen started to worsen I took a leave of absence from college, to return in November. Confused yet? At the very beginning of this year I took a hiatus from ALL social media to remove that distraction in my already distracted world, and it’s been nice. I’ve also only written in this blog a handful of times since then as well. But lately there is a stirring for me to return to the world at large, not just Facebook and this blog, but in grander ways too.
In this entire journey since finding out Aspen had autism, and then the possibility of going down this road again with another child, I have been living in a self-induced box of pity and self-loathing. The “why’s” and “why me’s”, even the “what did I do wrong?” as though evidence has emerged that yes indeed, 1 out of every 68 well-meaning mothers totally crapped on their kids in utero and now receive autistic children as their punishment for their wrong-doing. Because moms forever infuse themselves with guilt, I have been secretly living with the shame that I might have caused my sons to be autistic. I’m choosing to leave that fog of mental torture so that I can focus on things that really matter… since the cause of autism is completely unknown, me beating myself over this has become ridiculous.
Through all the self-pity, a special gift of grace has occurred to me, and that is GRATITUDE.
One day, while giving lip service once again in my complaints to my dearest friend of how rotten my life is going from appointment to appointment, therapy after therapy, children with delays, special diets, things I need to do, things I need to stop, yadda yadda she gave me a gift she doesn’t even realize. My friend, Ashley told me of one of her friends that has a brother who is 15 with the mental age of my little boys. He has muscular dystrophy among other things and is confined to a special wheelchair. He will require care for the rest of his life. His sister, Ashley’s friend, cares for him and she has three children and a husband of her own. She cares for him because their mother passed away. I can only imagine how it is taking care of this sweet boy. He requires so much tender care and therapies with frequent doctor trips too. I cannot imagine how this woman copes and manages. And my good friend Ashley told me she has never heard her utter a single word of complaint…….
In all my rants of how hard my life is I felt terrible. This woman has it so much worse than me. She works full-time, and I’m wonderfully gifted with my father’s business and my partner for running it that I can take this much time to do whatever it takes to care for my boys. I have a brand new vehicle that although has gotten many miles from autism, it still cranks out cold A/C and safely gets me where I need to go which involves a three county radius four times a week. I have those two people who I told you whom watch our boys whenever we ask, and a mother who would do the same if I coax her a little. I live in a very beautiful small home with no problems. I have enough money to buy my boys what they need. They have health insurance and my boys get therapy which is a HUGE issue in other states. Now, I don’t know this woman’s personal business, but I know that she doesn’t complain to her friend. And I have seen the house she lives in with a blanket in lieu of blinds to cover her front window. I’ve even met her and she is one of the sweetest people on the planet. And again, she never complains.
So when the opportunity arose that my soon-to-be wed father is getting married to a very kind woman that has told the wedding attendees to donate to Aspen’s ABA therapy place in place of gifts this started a whole new purpose in life for me. And now I step into the lit path that was probably already my destiny since I was gifted with these sweet boys of mine.
People with special needs kiddos have great needs. As I’ve said, there are Doctor’s appointments and therapies and supplements, and special diets and countless other sacrifices loved ones make for their angels. And there is a whole sector of people who simply cannot afford these things much less rent, utilities, gas, etc. And if I am blessed enough that I have these things then it’s my job to help pay forward some grace to others who do not.
I’ve collaborated with the owner of my son’s ABA program facility, which is the only state Medicaid approved place in our area, to give me a list of the items that these children and families need who aren’t able to do for themselves that would improve their therapy or just their life in general. All the wedding attendees will donate for this cause. And after this I’m going to be the middle man so to speak, in connecting the big hearts of those who donate with the recipients who need. This is why soon you will now see a page called, “Donate!” at my header. A wonderful man that has designed our business website and logos has offered to donate his time in developing a website for this new charity. I’m calling it “Autism Family Assist” and it’s going to be my love child. I’m going to help families with iPad’s and minis, iPod Touch’s and iTunes cards for those expensive educational apps. I’m also going to help families with gas cards to get to therapies and even gift cards to a restaurant for the parents who face a bleak relationship survival with a child on the spectrum: a study showed that 80% of parents of an autistic child split up as a result of the stress and hardships. I’m going to give gift cards to local attractions since quality fun time often never happens for families that don’t have money to spare for such splurges. And eventually…. eventually… I want to have a major fund for kids to get ABA hours that don’t have insurance or to places that will not accept state Medicaid insurance that do not have a wait list. Since ABA is the goldmine, it’s so saddening and maddening that some kids are not fortunate enough to get into a program right away like it is suggested… and at the suggested time of 30-40 hours a week. As you can see there are a lot of needs. There is a woman I’ve met virtually that has an autistic angel who has seizures badly and she does not have a vehicle to even get him to speech and occupational; he is like Aspen: three years old, nonverbal, with many needs. I will help where I can. Please go to the Donate page and do what you can. Even $15 is a gas card to help a family get to a therapy so desperately required.
I’m getting back on here and social media to step onto my path laid out before me. The road takes many bends and dips, but I have a feeling this one is about to be lined up straight with flowers and birds joyfully singing. 😉 (Yes, always the dreamer… trying to be optimistic LOL)
Some updated pics of my beautiful boys. 🙂
“Sometimes letting things go is an act of far greater power than defending or hanging on.” ~Eckhart Tolle
I started yoga teacher training a weekend ago for my second go around. In 2009 I thought I wanted to be a yoga instructor. I thought it sounded cool even though I knew nothing of what I was doing. I was a mess in my head and had not harnessed my mind in any way shape or form. I was scattered and screwed. I was trapped in thoughts, trapped in plummeting low self-esteem. I look back now in sadness for my ole’ gal. She has been through so much strife in the journey inward. I’m surprised I have made it this far in 5 years. I didn’t complete training while the others did. I was completely and utterly paralyzed by fear. Couldn’t make it to class and I “called out sick.” I had a friend ask me to teach a class of hers while she went out-of-town. I literally cancelled it the morning of the class, frozen solid in what felt like insurmountable fear. People must have been waiting at the studio wondering what happened. I could barely breathe through my mountain of mind crap. I was a total mess….
And right where I needed to be.
How could I know that overcoming fear could be so deliciously sweet had I not tasted the pungent black space fear possessed. How could I have signed up for another round of training and not be hard on myself, for yes, repeating this lesson in money as well and knowledge. How could I be where I am today, fully confident in so many aspects of my life if I hadn’t been in a place of total despair and despondentness. I was a little lost soul.
The answer is acceptance; Acceptance for where you are, where you’ve been and the path that winds through the dusty road. You see, there are seasons for things. Sometimes we aren’t meant to do something that we have longed in our hearts to do right at that very moment we want it. It might not be meant to accomplish right then. Perhaps that thing you wish for is better suited to begin down the dusty road, when it becomes yellow and made out of brick. 😉
I always thought I was going to college straight out of high school. I didn’t and it wasn’t my path. I used to be pretty hard on myself for that though. I was 20 when I became pregnant with my oldest baby, now almost 15 years old. I thought my life was over. But little did my feeble little self know then that motherhood would far surpass the joys, rewards, accomplishments and love of any college campus life I thought I needed. I fell in love instantly with that boy and still am till he and I perish and then I know we will continue on, crossing paths into the next lifetimes because that boy as well as my other two are the compass to my heart. I know nothing other than the love I have for these three beings in every atom of my body. My season for college came but it had no social importance like I thought it would as a high schooler. I would tuck my Elijah into our bed we shared, watch him sleep and type APA format papers until my fingers bled using dial-up internet no less! I was up almost every night till midnight doing nursing care plans before rising again at five in the morning for clinicals at the hospital. My future was more important now with this cherub of mine to think of. Alas, the season of college came and went but it was never how I expected it to come. And there became total acceptance.
Sometimes we need to try and fail, try and fail before what we are suppose to accomplish is done. Never will we know the outcome of our story, all the “why’s” we are dying to know, until we pass over that ether into the other realm and all will be revealed. Until then, acceptance for whatever lies ahead is what we need. In fact, if we could truly possess acceptance for THIS present moment, whatever that entails, there could be so much infinite joy available to us. So often we are wanting this, wanting that, instead of accepting this and accepting that.
Ekhart Tolle is one of our greatest philosophers of all time. I will never forget the passage in his book A New Earth about a woman who came to him depressed and completely distraught over the continued dreadful feelings associated with it since, of course, no one desires depression. She just couldn’t move past it. I can sympathize. Eckhart, in his beautiful wisdom, suggested to the woman that she completely accept that for this moment in time she is fully depressed and to simply live from that place. What happened next might surprise you like it did me. The woman came back and told Tolle that an incredible thing happened: she felt peace. It wasn’t that she had lost the depression but rather accepted it instead of trying to change it. And in not trying to change it she felt like she could breathe into a large girth of space finally and have peace. Because what we really thwart against is the denial of the feelings, not the feeling itself. It’s the denial of accepting what is. She was more upset about the fact she was depressed than she was in her actual depression. I am paraphrasing this passage in the book, because I don’t have it right in front of me as I write, but the summation of this hit me very hard. The woman was no longer struggling to get OVER the depression like we all do, as though she were a fish gasping for air outside water. Instead she accepted it and made friends with it so to speak….
I am reminded of my Aunt “Renie” so often in the idea of acceptance in timing. This woman is amazing. She has been a Life Coach before the word and one of the kindest spirits of anyone I know. She is a creative intuitive and literally creates on a daily basis with her mind in a constant explosion of ideas for herself and everyone she comes in contact with. Because her creativity is in fervent motion she begins many of these ideas in fruition. And some do not make it past the drawing board. She has always been hard on herself for this, which is of great sadness to me. My aunt does not fit the mold of most people. There is no linear way to everything and thank God. Acceptance for what is, what will be and what will not be is the greatest teacher. If my aunt were to fully embrace this aspect of herself she could see what I see: the incredible beauty she has of never ever being afraid to try new things, even if it wasn’t the season to complete it.
Eckhart Tolle says one thing I remind myself of almost daily: “Whatever the present moment contains, accept it as if you had chosen it.” Because indeed you have.
Aspen in Occupational Therapy this morning… accepting and LOVING what is 🙂 Happy Monday
“Smooth seas do not make skillful sailors”
It’s two a.m. Night before this just last I was awakened at midnight to the giggles of Aspen, my autistic toddler, through jumps up and down in the bed we co-share. I’m very fortunate, I realize, since Aspen does not tantrum and throw fits of frustration in the middle of the night like some kids with autism do; I will take the midnight giggles any day. But they last for a small nightly eternity. He never gets back to sleep until the sun has long come up during these episodes and I’m disheveled and worn by the light sleep, if at all I get during these times. I always say I’m having “an autistic” day afterward because it’s in times like these, not the everyday therapy rounds I make or the still non-talking gestures he uses to direct our attention to that which he desires… no it is in the dark and stillness of the night, when no other life’s distractions bind my mind up that it hits me: I have an autistic son and this is real.
While I was having my own “autistic day” which usually means I’m struggling to accept & grappling with this syndrome and all the realities with it, I’m also dealing with the world through a fog of fatigue like none other I have known. I used to pull “all-nighters” in nursing school and I still had more energy and focus than what I seem to have these days if I lose 2 hours of normal sleep. But in the fog of yesterday I had to actually function since I have two other children and my youngest, Jasper Blu has been requiring more attention lately with eye surgery and Genetic poking. The geneticist is greatly concerned that he has developmental delays and therefore a possible genetic abnormality given this particular eye disorder he has coupled with the delays. Yesterday was a 12 hour round road trip to see the Ophthalmologist and Geneticist to hand me the results of Jasper’s recent blood work to indicate how high maintenance we are really about to get in this household with autism and genetic conditions. But they never bothered to call me to let me know the doctor was sick and out of the office all week so she could not be there to give me the results I have been hinging on since we began this journey almost 4 weeks ago. A wasted trip. I have already called the corporate office of this large children’s hospital/clinic to speak with someone about this trip I made for nothing.
Now, exhausted and spent, I am awake again with Aspen this time running a fever. It’s high and I can’t get the thermometer to work so I give him Tylenol and a middle of the night break-down. Thank God he is too exhausted to care I am bawling over his body praying to God to heal my poor baby. He’s lightly shaky and has not the words to tell mommy his aches and pains and fears. I just silently plead to that God I told you last time dwells in me and also in you, and also in my beautiful little 30 pound toddler’s body. I pray for healing. I pray for healing. I pray for healing.
We never know why each of us are “gifted” in life with the struggles we have been given. My life seemed like a cake-walk before 2013 and now everything revolves around therapies and appointments and doctors and procedures and food intake on a picky eater and eye exams for Jasper and patching and working with Aspen on such things as a feeding himself with a spoon, making sounds to indicate he wants something, waiting in lieu of bolting, and pointing his cute little finger at flash pictures before him. Pointing… something as simple as pointing.
There are so many challenges we face with his delays and now with little Jasper too. Did I mention I have a slightly neglected 14 year old I am trying to keep up with too? I am struggling, world. I am so desperately struggling at times. Some days I don’t shower at all and sprinkle baby powder in my hair because I just could not make it through the shower. I just said that out loud oh geez. Some days I eat out of comfort. Some days that are really bad and both children are screaming, I make sure they are safe and secure and I go into my office, close the sliding glass door tightly and scream too.
And then the questions come….
Why do my children have to go through so much? Why do I feel like a terrible mother… as though I actually caused these delays? What can I do to help them God?
I saw an interview that Iyanla VanZant did with Oprah where she talked about having three prayers: the first– “Help!”, the second– “HELP ME NOW!” and the third– “Thank you”. Last night and lately my prayer has been HELP ME NOW God. I want my babies to be well. I want Elijah, my teenager to know and feel like he is a priority even though my time is taken up in gobs by his younger siblings. I want Aspen to be healed and Jasper to be healthy too. My relationship with my partner is already so strained that we are living in two different homes and sadly it has been a great relief to have at least one thing not pressing in on me. As I type this I can gravely see how 80% of autistic parents end up separating.
We, as spiritual beings having this experience as humans, are all in this together. We all have divinity running through the pulse of our heartbeat. And everyone, everyone, struggles inside or with our environment somewhat in little to big ways. We would not be in human form if we did not. And I know that these trials are teachers in disguise, beautiful lessons or all part of the greater path. Sometimes I feel like in these struggles I feel more gratitude than when things are so smooth as glass-surface waters because I take things moment by moment and know that although I pray for healing and relief, that things could be so much worse; I count my blessings and not my deficits. Being a spiritual person I notice in the struggles the tension I feel when a voice in my head says I’m not suppose to have strife… I’m apparently suppose to be completely calm, sane, rational, nonjudgmental, poised, always loving, always in the present moment seeing things as gifts rather than a pain in my a**. And this isn’t so. Even the most spiritual people have struggles and should talk about them more to give light to those suffering. My own spiritual teachers and friends don’t speak much of their own struggles. I find that very sad. They are often giving advise, knowledge and love, but never talk in comparison to what they go through as well. So even as I am writing this entry my egoic mind says not to put it out there how much my struggles can be (especially Lawdy! that bit about screaming in my office! ha), but the divine mind that is filled with lovingkindness and not judgement is writing this post and spiritual people struggle too. I hope you find comfort in all this. Life can be difficult and so blissful and charming all in one. We are all blessed beyond words to live the experience in this human form… including sleepless nights, screaming fits, and wasted trips to doctors. 🙂
But to add a bit of joy to this post I simply HAVE to share this picture of my cute little “minion” who just got a pair of glasses… as if this child could have gotten any cuter! 😉
(To add comments you have to click on the actual blog post and scroll to the bottom… I have to get this fixed!)