I have blogged about this many times before....only because it is so very real. It is scary. To know that Mateo is growing up. That he won't be my little boy forever. That the bigger he grows, the harder it is on his heart. And all we can do is hope and pray that his heart is strong, stays strong and holds out until......until what? We really don't know. Until they find a cure? Until they find a permanent fix? I don't know. Just.....until. It is hard not to fear the unknown. Its a big, bottomless pit. As heart parents, we just want to know that our children will be alright. That even if the Lord does call them home too soon, that it will be swift, painless and not mean days, weeks, or months of fighting for each breath, suffering and enduring pain in a sterile white hospital room. Its hard knowing that your child is NOT alright. Yes, Mateo is fine and healthy and doing so wonderfully well right now. But that is right now. After all he's been through, he still only has half of his heart. And its doing all the work of a whole heart. Its bound to wear out at some point. But when? Next week? Next year? In 5 years? 10 years? 20 years? Will there be a fix for it? Will he live a normal adult life? Will he even reach adulthood? How many hiccups will there be along the way? We KNOW there will be something to fix eventually...whether its a valve that needs replacing or a pace maker placement or an artery that needs widening.....or a million other things. What we don't know, is if its going to be a major issue or just a bump in the road. And so, again, I HATE HLHS.
But then....we can always find a light in the dark if we look for it. I so often have to turn to God's word when I feel like this. I cannot crawl out of this pit on my own. It threatens to swallow me whole and God's promises are the only thing I can cling to, even if I'm barely holding on...clinging to them by the tips of my fingernails.
Tonight, I felt despair as we pulled into the driveway. Of course, I was still smiling big and singing along with Mateo, but my inner joy was replaced by hate and despair. And so after everyone is in bed, I turn my bible to Psalms. There is so much hope in those pages. Thank you LORD for including them. I think a lot of people would be lost in their despair if Psalms hadn't existed. How can these words NOT uplift me?
"When I am afraid, I put my trust in you. In God, whose word I praise, in God I trust; I shall not be afraid..."
"Be merciful to me, O God, be merciful to me, for in you my soul takes refuge; in the shadow of your wings I will take refuge, till the storms of destruction pass by. I cry out to God Most High, to God who fulfills his purpose for me."
"Your steadfast love, O LORD, extends to the heavens, your faithfulness to the clouds."
"Let all the earth fear the LORD; let all the inhabitants of the world stand in awe of him! For he spoke, and it came to be; he commanded, and it stood firm."
"From where he sits enthroned he looks out on all the inhabitants of the earth, he who fashions the hearts of them all and observes all their deeds.....Behold, the eye of the LORD is on those who fear him, on those who hope in his steadfast love, that he may deliver their soul from death and keep them alive in famine. Our soul waits for the LORD; he is our help and our shield. For our heart is glad in him because we trust in his holy name."
"Wait for the LORD; be strong, and let your heart take courage; wait for the LORD!"
"Weeping may tarry for the night, but joy comes with the morning."
And so the fear melts away and I can begin to breathe again. What a feeling it is to release all those negative feelings. Let the Lord take them away. Cast your cares on him. To unburden yourself and give the control over to God is a life saver. I know this is momentary. It will last only awhile....until something else happens to steal my joy by reminding me that I'm not in control of Mateo's future and that I don't know how it will turn out. But that's the wonderful thing about freedom of religion. I have a bible in every room of my house and can even read it on my Kindle in the dark, while nursing Mason back to sleep for the zillionth time at night. Its always there for me to turn to in those moments of despair. So tomorrow, I will get to enjoy my Tuesday with Mateo. I get to find joy in the little things again. I love taking him to school. I love watching him with his friends. I love how his 4 year old mind thinks. The things he says and the things he does have me grinning or chuckling almost all day long. So my advice to you tonight......find your bible. Dust it off if its been awhile. Open it to Psalms....or any passage you enjoy reading. Meditate on it tonight. And in the morning, find your joy.