It's hard to see the miracle of his life when you're grieving his death.
--words of wisdom from a friend.
I cannot even begin to say how true that statement is. I don't even know where to begin. So bear with me as I just write what comes to mind whether or not it seems to have any sense of direction. I thoroughly dislike this rollercoaster that began as soon as Malachi was born. There have been highs and lows throughout each stage--NICU, IICU, home, PICU, death, grief. So much of me wants to be able to compartmentalize it all and systematically work my way through our Malachi story from the beginning--like that will help me make sense of it all. Part of me wants to relish in every memory I have of my baby and soak it all in--the good and the bad. Some of me wants to just entertain away the pain and try to "forget about it"--haha, yeah right. I'm having a hard time discerning what God would have for me to do with all of this. I most definitely feel the need to go back, not to relive and be depressed or to try to make sense of it all, but I need to glean all of the miracles and all the ways we saw God work in our lives. Not just "focus on the positive", but attempt in some way to bring Him the glory through our little boy's life. To remind myself it's okay to grieve, yet to do so with the hope of Easter--knowing Malachi is most certainly alive and well.
All of this is coming to a head because an idea popped into my head today. I thought, "Hmm... I wonder where I was one year ago today." Thanks to blogging, I was able to quickly head back to last April. This is what I found:
"Conference today with Malachi's Immunologist. Safe to say that the results from his initial bloodwork a couple weeks ago is not very promising. Please pray for peace as John and I speak with Dr. N. this afternoon at 3:30."
"Well, let's just say that the meeting didn't go quite as expected. There is just not a lot we can do right now."
"Tomorrow, they will begin a medication to temporarily suppress Malachi's current lymphocytes. This seems counterintuitive, but the lymphocytes are not regulated because of Chi's missing thymus. There is a good chance that the lymphocytes that are in his body, are still mine from when he was first born and they are now attacking his skin (just as if he were to have an organ transplant and his body rejected the new organ)."
"Basically, Dr. N (immunology) told us there is no worldy reason that our son should still be living, let alone be in any sort of "stable" condition...
...We can safely say that Malachi is only surviving because God has chosen to sustain him...
...All that to say, Malachi has come a long way and has already exceeded the expectations of many. However, he is still very much in critical condition...
...The most probable outcome is that Malachi will die of an infection before his first birthday--news that absolutely no parent is ready to hear...
...Medically, there is no reason that Malachi hasn't already been attacked by a fatal infection. God has a purpose for our baby and we are completely overwhelmed with the responsibility that comes with being a steward of His child."
There is so much about this time of year that my mind is not ready to grapple with. The weather, the smells, the sounds. Add to that a new baby who is getting more and more the size of Malachi when I last held him in my arms. At times it's just completely overwhelming. At this point last year I felt like God was preparing me. For what, I wasn't quite sure. My weeks are still filled with plenty of ups and downs (which they would be surrounding a terminally ill child or a completely healthy one) but I'm learning. I'm learning to accept my weaknesses and I'm slowly letting Christ fill the gaps and be my strength. I know full well that I cannot move forward on my own.
Please pray for us in the next month. May 25 is the day Malachi went home to be with the Lord. Sorry for the randomness, but in a selfish way, I think it helped.