I am by NO means a "newbie" mom. I have 5 other kids which all have some pretty strong special needs themselves and some rare conditions and some life threatening conditions. I also took in medical foster children for about 9 years. I was a nanny for several families who had SN kids.
And yet, Manny is a whole new plateau of demands on my brain power, my motherly reserves, my faith, my everything. And completely worth every nanosecond and ounce of strength I can muster. But it's a lot.
There's no way I can ever complain either. First of all, I don't have time to complain. But secondly, there's this nagging thought that hits me immediately: Your life could get "easier" in a flash.
April 5 I woke up with this gnawing in my spirit and a lump in my stomach (metaphorically speaking). I even told Dan I felt like there was impending news and I didn't feel it was good. Something had 'shifted'. By that evening, Manny started in with a low grade fever. 10 days later he still has it (plus a whole bunch of new symptoms).
I head in the morning to the Endocrinologist to see if they can figure out the new metabolic "shift" that Manny has experienced. But I can read. I can research. I know the literature. And I know what it infers, implies and means.
Let's suffice to say (for now) that Manny is in need of a whole new miracle. Now the good news is that I happen to know the Miracle Maker. And I happen to know He is very, very fond of Manny. I also know many people are talking to this Miracle Maker about Manny and it pleases Him very much. So ... if we're going to get one, we're hooked up to the right source.
And my heart is heavy. My stomach is still in my throat. I feel numb. Exhausted. Overwhelmed. And I go to my Father for comfort and He offers it. But He just tells me it will all be OK. Which I know. THIS I do not doubt.
I also know that God sometimes makes everything OK by taking little children home. I truly, truly believe that He only does that when that is the best thing for the child. And my earthly eyes and heart just can't see how it's the merciful thing to do sometimes but I TRUST that He knows what He is doing and isn't mean or evil or vindictive. I trust that He's weighed out all the decisions and has considered all the alternatives.
And all that is fine ... in theory.
But ... in reality? I'm very aware that Manny is in the palm of God's very capable hands. But I'm not ready to let God have Manny full time.
But I can also do the math. And without a divine intervention NOW, well ...
I find myself often caught between the two worlds. I fight, fight, fight to keep Manny healthy, getting the care he needs, praying for wisdom and healing. It's a 24 hour a day battle that I NEVER stop fighting. And I will fight it until this fight is finished. I need to know I've done EVERYTHING that I could do to give Manny the quality of life he so deserves. I don't ever want to wonder "what if" or have regrets of holding back my love or my faith or my prayers or my capabilities. I'm ALL IN.
And then there's the other side where I see God preparing my heart. I see the circumstances where He leads me to books or conversations or whatever to help me prepare for when God calls him home. And with that comes HORRIBLE, HORRIBLE, unspeakable decisons that have to be made. Cremation or burial? Or maybe donate his organs or whole body to science so other kids can be healed of this horrible disease?
And that's about how far I get (about 3 seconds in) when I force myself to not go down that road. But the truth is ... if he dies, I need to have these plans in place ahead of time.
And then I wonder if those thoughts themselves are a lack of faith (I know they're not). But I've come to understand, Parents have to make hard decisions. We are forced to buck up and do the most incredibly difficult jobs in the world.
So after those brief seconds (trust me, I don't harbor or entertain these passing thoughts), I get back to fighting for Manny which involves putting one foot in front of the other. Finish the task right in front of me. Today those tasks involve writing a summary update of what is currently happening with Manny's metabolic issues and to write all the questions/concerns I have. I'm also writing a letter to the head doctor that I usually see at the Hospital to let him know some of the things that were mishandled when Manny was admitted last week. I'm packing ... just in case they need to run further tests. (The clinic where we're going is about 3 hours north of us.) I'm arranging for the kids and the dog to get cared for in case I'm gone for a while.
Somewhere in the business, I can almost push those thoughts to the back of my head. But they're always there. And currently, the newest symptoms are particularly discouraging as it seems Manny's whole metabolic processes are shutting down. So it's very, very serious.
I don't mean to put this heavy stuff on anyone. I don't need anyone to worry about me and my mental state. In fact, I'm writing this because it seems that all I write lately is data and fact and avoid talking about feelings. So today I thought I'd let you in on that. My heart is heavy.
I'm always reminded by a scripture that basically says "Mary considered/hid these things in her heart." This is referring to Mary, the mother of Jesus. And I wonder what she felt as she saw her son being crucified. We know she was there as He hung on the cross. And I understand why. Most of His disciples had left scriptures seem to indicate, but His mother? Where else would she be?
She had the heart of a mother.
This is what Mothers do.
So I, too, consider things in my heart.