Autism · Doctors · Family · Lupus · Parenting · Redemption · Sensory Processing Disorder

Moment By Moment – This Is How We Live

There are a few moments in my life that cannot be undone. The ones that stick with me, stand out…the ones that no matter how much time passes, I can still remember vividly, what I wore, her voice, what he looked like, how I felt.

There are a handful of these moments that I carry with me, everywhere I go –

The moment I saw my newborn son for the first time.

The moment my mom called me to say that my dad was in the hospital and would likely die.

The moment I felt God’s presence, as real if not more real, than any other.

The moment my husband said, “I do.”

The moment the doctor said the word “autism”.

The moment my youngest son grabbed my face, pulled it close to his, and whispered, “I wuv you, Momma,” for the first time.

Such a strange mix – so much joy and so much pain. All jumbled together into the very moments that define my life. These moments are precious, every single one.

They are uniquely mine – as a wife, as a momma, as a daughter, and as a human being.

brothers

After several weeks of back and forth, this blood test and that prescription, that hospital and this office, we finally have another diagnosis… and another moment to add to the list.

My son has Systemic Lupus Erythematosus. This has caused him to have arthritis in one hip and in both ankles. It requires more medicines already than I ever thought it possible to even get him to take. Our next steps include major diet changes, lots and lots of doctors appointments, more blood tests, another MRI and I have no idea what else because that is all just in the next few weeks. I cannot even allow myself to think beyond this.

And the truth is, although it is not the news I was hoping for, I am grateful that we know. I am grateful that we can start to figure this thing out.

And, it’s a lot.

I am freaking out about the diet changes, mostly because I know sometimes getting him to eat anything at all is a win.

I am reading as much as possible about how a person on the spectrum (and/or with sensory processing disorder) can experience pain, and communicate when they are in pain, very differently than my neuro-typical self. More importantly, I am trying to figure out how best to help my son’s doctors understand what this means for their examinations.

But mostly, I really am just enjoying this kid. He has been in a great mood since the medicines started providing some relief from the constant pain. He has been playing with his brother, smiling more, hugging me all the time, and making jokes with Mick.

It’s like we got him back.

And the truth is, I missed him. I really missed him. I didn’t realize how much, until he returned to us, all smiley and goofy.

These glimpses of my sweet boy… I can’t tell you how much they mean and how encouraged I am that we will be able to help him in all of this.

IMG_3514 So now we know.

It feels like everything has changed.

And it feels like nothing has really changed. Because, just like you, I wake up every day determined to do the best I can.

I fail, all the time.

I pray, all the time.

I see progress, some of the time. (He took and bath and brushed his teeth without any major drama? Praise Jesus!)

I am just like you –  I am a momma doing the best I can with what I’ve got.

The best I can do means messiness. The best I can do means joy and sorrow and laughter and grace and anger and beauty and love.

It means another moment in a doctor’s office, another moment wrapping my arms tight around this boy, another moment laughing out loud as the four of us play, another moment crying because I just don’t know what to do next, another moment and another and another, irrevocably woven into the fabric that makes up my son’s childhood, my motherhood, and my lifetime.

I want to gather them all up, so that none can slip away.

Moment by moment – this is how we live.

I can’t imagine anything more precious.


Moment By Moment

 

7 thoughts on “Moment By Moment – This Is How We Live

  1. Once again, such a beautiful and honest post. I am so glad that you have answers, even if they were unexpected. And, moreover, I’m happy to hear that you’ve got him back. Enjoy that sweet boy. I hope he finds relief, and that the diet restrictions go well. Sending warm thoughts.

  2. I discovered your blog through Simple Homeschool. I have been reading your posts and been blessed by your courage and faith. I cannot imagine the food challenges you face let alone the restrictions and meds. I have autistic nephews and friends dealing with sensory issues. At our house, it is food allergies, gluten intolerance and all it’s wild symptoms from joint pain to wild emotional outbursts, digestive issues and headaches. Coupling that with picky eating and it is challenging. I think the fear of food, the struggle of eating out because it almost always results in my son and I getting “glutened” and just getting exhausted by food prep are the biggest struggles I face. I wasn’t sure if a gluten free diet has been recommended by your physician, but my doctor has mentioned the connection to autism and I have read there is a Lupus connection too. If You feel led to check it out, here is a link about the Lupus/Gluten thing. http://ard.bmj.com/content/63/11/1501.full If not, put it on the shelf.

    1. Seems part of my message got cut off. I just also wanted to tell you that I am praying for you to be led by the Holy Spirit and that his direction will be clear in the sea of information and research you must be facing as you search for answers to help your family.

  3. How often I’ve said “This to shall pass. ” and now we have one of those diagnoses that won’t pass. In addition to being on the spectrum my 18 year old daughter has Borderline Personality Disorder. At least with a diagnosis we aren’t floundering around in the dark anymore, but it is a lifelong disorder. God knows. My only consolation.

  4. Another wonderful, honest post, and where I am at too at the moment.
    Praying for you and thank you for the encouragement your blog brings us all

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