Prayers wanted

It’s not my story to tell but one of our own needs some serious prayers tonight as her little boy is going through emergency surgery. Please just say a prayer for the little boy who’s in surgery right now. God will know who you mean, I’m sure of it.

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Please pray for Rhett

You know, it’s funny, all day long I’ve been thinking about this whole “Autism Awareness” storm that’s swept its way through the news media and blogs lately. I’ve been pondering what I think of it and what it all really means in my life. Today, I had some really wonderful thoughts about different kinds of awareness, connections made, and lessons learned as we travel along in our journey with Nik. I’ll share those thoughts with you in another post.

Tonight, I want to shine a light on a very special family —again. I first introduced many of my readers to Rhett and his family not too long ago in this post. The struggle is not over; in fact, it seems to be deepening. Please read this post for more details.

Now, I know that Pam and Andy are incredibly strong and their Faith carries them through so much. But folks, everyone needs love and support in times of trouble and I would say this is one of those times.

Please, reach out and let them know you are still thinking of them, praying for them —especially for Rhett, sending out “good juju” vibes or whatever it might look like for you to lend a helping hand and an open heart.

Because, really, in the end all that matters is that we are aware of one another as human beings; the color of our skin, the politics or religion in our minds and hearts, the diagnoses our children or other loved ones share —none of it matters. It’s the connections we make, the lessons we teach one another about love, compassion, dignity, respect, and hope.

Spread the word.

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All Manner of Healing

Lots to say today with no way to write what I really want to about Nik, his communication devices, health, life, and a host of other things. I fell down some stairs yesterday and injured my left wrist and shoulder. I’m typing one-handed (actually two-fingered) on an ergonomic keyboard while wearing a splint and sling; it’s sloooow going, folks! Until I am back at full speed, I want to point you to some other posts and people.

First off, check out these posts about Autism: the Musical which will premiere on HBO on March 25th. And spread the word!

Then…

If you don’t already know the Bird Flock, please check out Rhett’s Journey. I originally found this blog through Jennifer at Pinwheels. I stayed because I fell in love with Rhett and his inspiring, loving family. But folks, this isn’t just a plug for someone else’s blog about their adorable child.

The Birds have been through such an incredibly hellish year which has impacted just about every aspect of their lives —and it doesn’t seem to be letting up. Reading between the lines of what was not said in this post —because her other children read it, too, and Pam didn’t want to freak them out— little Rhett is facing some extremely serious surgery this week and has more on the near horizon. The outcomes of these surgeries may well mean his life span could be shortened. Significantly shortened. It’s a scenario no family should ever have to face.

If you believe in miracles and Divine intervention, I implore you to please read about Rhett and then add yours to the many, many voices being lifted up in prayer for Rhett and his family. If you believe in other manners and methods of healing and spirituality, I urge you to add yours to the energy and visioning being sent out to the Universe as well.

Photo courtesy of the BBC

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Between a Rock and a Hard Place

Finally! There is some forward momentum toward diagnosing Nik’s mystery ailment. It seems to have an awful lot of the hallmarks of Intracranial Hypertension and yet there is also still the disturbing immunological component which has waxed and waned for more than a year now. The chronic, low-grade fevers and mild infections, the low immunoglobulin followed by the “robust” response to immunizations (as tested by various blood work for antibodies). The ear and head pain, the eye discomfort, the constant swollen glands without any active infection. The constant nocturnal awakenings and episodes of excruciating pain —where once Nik slept peacefully, painlessly for ten to twelve hours a night without fail.

You can understand why we might be a tad tired and frustrated, anxious and ambivalently hopeful about finding an easy or simple answer. Nothing about my son has ever been “routine” or straightforward. Call me jaded but I don’t expect that’s about to change any time soon.

This is why I have such mixed feelings about the MRI now scheduled for Friday morning. Yes, as in the day after tomorrow. (Have I mentioned lately how much I appreciate Dr. Mary? She called in some favors to make this happen so fast!) Either way it turns out, it’s not good. Stay with me for a minute, here…

If there is a mass or lesion or some other visible anomaly in, on, or near Nik’s brain that’s clearly not a desirable thing at all. In fact, that’s got to be one of the most terrifying things for me to think about. Yet, the alternative —the idea that there is no visible, discernible cause for all his excruciating and unpredictable pain? I’m not sure that’s any better. The need to find answers juxtaposed with the need to find “normal.” It just isn’t reconciling in my poor brain. Is this some sort of cruel cosmic hoax? WTF?

What’s a mother to do? “Dear Heavenly Father, please let there be a tumor in my four year old’s skull…” versus, “God, please don’t let them find anything wrong in Nik’s brain (which means they don’t know what is causing the pain)…” I can’t reconcile myself to either. If I thought I felt lost before, this is a thousand times worse.

What would you wish for if you were me? Ok, besides normal MRI results and the complete cessation of any and all of Nik’s mysterious and debilitating pain? I only wish my questions weren’t rhetorical or my dilemma hypothetical.

Keep on praying, please? For what I can’t say —the best possible outcome, I guess. Whatever it looks like.

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Lighting the Darkness

For those of you who have been following our journey, you know that Nik is currently facing some undiagnosed health challenge. I’ve spoken to the pediatrician and we are formulating a concrete plan of action to try to find some answers. Meanwhile, though, the situation is not improving and it is taking a significant toll on our entire family —but most especially on Nikolas. He is flagging and I am very concerned for him.

I am a firm believer in the wonders of science and medicine but I also know that there is tremendous power in faith and prayer as well. I don’t ordinarily ask people to pray for something specific but I am asking you all to say a prayer —to whatever deity or higher power you choose to believe in and to ask the people in your church, synagogue, or mosque to lift their voices in prayer —for healing for my son.

Please, please pray for healing and peace for my little boy. For God to guide the hands and hearts of those entrusted with his care that they may find answers which will allow them to ease Nik’s discomfort and which may lift the burden of fear and uncertainty for our family.

My personal relationship with God is just that, so I don’t talk about it much with others. But I do believe that God brought Nikolas to this world for some great purpose as yet unknown. I am humbled daily at the prospect of God’s unwavering faith in me and in my husband to guide our special child through this journey of great trials. I am fearful that I will falter on the path and will not do what is right and good for my son, for our family. I am constantly amazed and touched —and humbled yet again— by the loving goodness of humanity, that strangers reach out to me and become friends in my hour of need. Truly, this is the message of God’s love in action.

I take comfort in knowing that we —Nik, Niksdad and I —are enfolded in the hearts of so many and can rest peacefully, for however short a time each night. That the love we put forth comes back to us manifold in blessings we cannot envision. That the tiniest flicker of hope which wanes in the darkness can be fanned into a brilliant flame by the energy of others who lift us up in prayer.

That is the light I hold in my heart tonight.

What matters?
Very little.
Only…
the flicker of light
within the darkness,
the feeling of warmth
within the cold,
the knowledge of LOVE
within the void.

Joan Walsh Anglund

Image courtesy of
http://www.bobjude.co.uk/graph/anim/animate4.htm

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