This week, I take my mini coffee fiend in for an MRI of his spine. Well, three MRIs of his spine to be exact. For the second time in his little life, he will be put under general anesthesia.... which is the strangest thing to try to wrap my head around really: medicine that controls your consciousness. We use it so often we forget that it's sorcery.
After that, we will find out if he needs to have surgery on his knees. Something in my gut is telling me the surgery is in our future, but I am ignoring my gut because if I listen to it and think about them cutting into my baby, I might accidentally run off and disappear into the woods....and start gardening and raising goats... and build a yurt for us to live in....away from all of society's pressure to do silly things like extend your knees. We still have hippo therapy and developmental preschool and we are looking into adding some additional more intensive therapy as well. Next month, he goes in for an EEG and another neurology appointment. After that, we have follow-up appointments with the endocrinologist and the orthopedic specialist.... I suppose just because that is what one does, considering they called to let us know that Rory is a big, head-scratching mystery and there is really nothing they can do to help him. After that, he has a nerve stimulation test, which the doctor informed us is "uncomfortable"....which is, of course, doctor code for "we are going to hurt your baby but it is for his own good so you can't punch us in the throat." After that, he might have a muscle biopsy... And, after that, who knows? Maybe we will have a diagnosis. Maybe we won't. Maybe Rory will just forever be Rory with no obvious explanation for the unique ways he engages with the world. Even if we do have a diagnosis.... will that explain why Rory likes to crawl around carrying random things in his mouth while making noises to himself and drooling? Will it explain why he wants to hug every person we meet? Will it explain why he likes to empty bags and boxes, rip books, and shove his mouth full of lego pieces instead of playing with his toys? Will it explain how he understands words and phrases and can follow directions and can point to things you name...but why he can't answer a yes or no question or tell us what he wants for dinner? Will it explain why people are drawn to him from across the room because he glows like a freakin' angel of light and beauty? Nope. No diagnosis will explain why Rory is Rory. Just like saying Dexter is a "four year old male" does nothing to explain why he hates to wear underpants and is obsessed with fruit snacks. The answer is actually just that the wild and wonderful and weird set of genes that this person was given arranged themselves in such a way that this unique individual is who they are and since any diagnosis is applied to an individual, no diagnosis looks the same. It is what it is. I don't know why Rory was chosen to have legs that won't obey him and a brain that won't let him speak any more than I understand why Liam got to come home from the NICU perfect and whole when preemie friends can't walk or talk... or never got to come home at all...or came home and still did not make it. It just is what it is what it is. Remembering that Rory's life is his own is helpful to me. My journey is one as a mother and as a caregiver, and sometimes that journey is exhausting.... but I am not Rory. Rory does not wish he was like other three year olds. He doesn't worry that he will never go to college. He doesn't care that he needs extra help. He knows he is loved. He knows his needs will be met. He is safe and happy. His journey is his own. I have no right to project my own desires on him and then be sad "for him" when they are not met. It is dishonest. That sadness is not "for him," it is for me.... for all the things I miss out on. Except you cannot miss out on something that never belonged to you in the first place. Now that I have gotten to that coveted place of genuine acceptance, I am working on finding balance on my own journey. I am learning the hard way that I cannot be the same person that I always was and I cannot do the same things that I always did, or at least not at the same pace. The management of Rory's care takes significant resources. There is a reason that babies are only babies for a short time. Their care is labor intensive and repetitive. Changing diapers and clothes, remembering to pack their diaper bag before you leave the house, feeding them, washing them, rocking them to sleep, fishing marbles out of their mouth, closing the door to the bathroom so they don't drown in the toilet, holding them so they don't roll off the edge of a bed, cleaning up the epic messes they make, figuring out what they want without verbal language. Usually, we only do these things for a year or two as a child learns their boundaries and gains independence so not knowing that this sort of care will ever end has been a challenge for me. Adding in the additional medical care he requires and doctor and therapy appointments ...I keep wondering why I constantly feel drained without feeling like I have accomplished anything. I keep waiting for life to get back to "normal" and having to remind myself that this is normal now. I don't say all this for head pats or pity (from anyone that actually reads this silly blog anymore). But here I am on the other side of this life experience after years of watching parents of kids with special needs and thinking all sorts of things.... and probably saying some of them too, about how great they are and how I could never do it and blah-blah-blah.. And I get it now. I get now why none of it matters. Can I tell you the things you could say to me as a "special needs mom" that would really make me like you? "Taking care of three wild boys and one with special needs is not at all intimidating to me. In fact, I think it would be fun. Can I babysit for you?" "Rory just hit my child and I did what I would do if any other kid hit my child because I understand that having a disability does not mean Rory is immune to becoming a total jerk and I support you in raising a kid that isn't a jerk." "I love your kids and I want to prove that by not avoiding spending time with them or by talking about how exhausting they are all the time and how I don't know how you handle them." "When that thing comes up that you are totally stressing about.... I have a plan for how I could help you with that." "Can I come over and hang out with your kids? I like spending time with them." " Let's do something fun together." "I hired a house cleaner for you!" "How do you normally handle this situation? I respect the way you do things and want to be able to help when I am with you and your kids." "I dropped dinner on the porch because I know you were going to be in doctor's appointments all day today." "Could Rory come over for a play date?" "I have a basic awareness of what is going on in your life and will therefore not put you in the awkward position of constantly having to turn down my requests when I know you have a lot going on and will maybe ask someone else for that favor during exceptionally busy periods." "I also know that you are a decent person and do actually care about me so I will not hesitate to call you when I really need you." "Go on a date with your husband and I will watch your kids." "What can I do to help?" You know how I know these things will make me like you? Because I have friends that say them to me- not many, but some...and guess what? While other people are okay, I guess...those friends are the ones I really, really like. Okay... maybe they don't say all these things exactly, but I am lucky enough to have a couple of friends that I know I can count on when things get hairy, who maybe don't envy me the three-ring circus that is my life, but also don't make me feel like a total leper, and who show up in really tangible ways when I need them. If you don't want to say these things, that is totally cool. I don't expect the world to bend over backwards for me and Hurricane Haddock. I made my choices and I am a pretty self-sufficient person. But maybe just don't replace it with platitudes about how awesome I am by managing not to curl up in a ball and cry about my broken baby. Or by pretending that living with a child with significant special needs is all light and love and good parking and free trips to Disney World. Or by acting like you can't understand why I am not the same person I was before I had this kid. Just maybe don't say anything? That would work too.
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We may have overdone it on the Easter events this year. The boys had fun, but Mama was wiped out by the end of the weekend. We will probably scale it back just a bit in the future, but what's done is done and I can't say that I minded the constant grins on three little faces. On Saturday, we went on the Southern Belle's Easter brunch cruise with Grams, Mamaw and Gigi. The highlight of it for Liam was the magic show, the highlight for Rory was the Easter bunny and the highlight for Dexter, who seemed to love it all, was getting to sit in the captain's chair. We also got to enjoy the boat ride and see a lot of interesting scenery and wildlife. It was a good time. That afternoon, the big boys and I hit up a local church's Easter Egg-stravaganza that they had advertised in the paper, while Rory napped. It was a little bit crazy but the boys enjoyed the inflatables, egg hunt, and snow cones, of course. On Sunday, we started the day with small Easter baskets for the boys. I never get them much because they are so blessed with so much family that if I overdid it we would be drowning in presents. They were happy with their kites, bouncy balls and big chocolate bunny. Then we had brunch and another egg hunt with our *practically family* from down the street. We had a delicious vegan meal (we won't talk about the egg whites that came to the party uninvited- Aldi sausage, you let me down) that EVERYONE loved. Even my carnivore spouse! And then let the kids find eggs willed with Pokémon and vegan-friendly candy in the front yard. They were really egg-cited about it. ......see what I did there? We finished off the Easter weekend with a delicious dinner at Nana and Pop's house before Papa headed to Boston and the boys and I stayed with Nana and Pop for a few days of Spring break.
Hoppy Easter, Everyone! |
WHO AM I?
I am Michelle: a wannabe hippie in love with a bonafide geek. We also spawned. I spend my days with our four wild, beautiful boy children and I overshare about our life online because I am a Millennial and that is what we do.
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