In the midst of the darkest times in our lives – it is by faith that we see, courage that we fight, hope that we persevere, and love that we survive.
Last Friday was a very dark day for our family. I was traveling home from an appointment at the Joslin Clinic with my aunt and my Mito sister Liz when the cell phone call came in. I was exhausted from an unexpectedly long day and irritated because I was, once again, stuck in rush hour traffic. The voice on the other end of the line was that of a physician calling with test results regarding myself and my son, Will. He called to tell us that both Will and I had moderate Complex 1 deficiencies and that this, combined with the POL-G1 mutation solidified the diagnosis of Mitochondrial Disease for BOTH of us.
Even though Will and I shared the same gene mutation, none of Will’s doctors had given the diagnosis to Will as they were still trying to make sense of what his other MtDNA mutation meant…and, even though we now have the RIGHT answer as to why Will is struggling and has been having a lot of continued (and also new) issues – it certainly doesn’t feel good by any stretch. It feels horrible, actually.
For a few brief moments as I inched along on route 128 heading home, I found myself feeling like it was just too dark to even think about seeing any sort of light ahead.
I was really hoping that maybe the doctor was going to tell me that everything looked wonderful and that we were on the wrong path, but those were not the words he said and they hit like a ton of bricks.
There was no mistake that the phone call came when I was with two very supportive and loving people. I can’t tell you how important it was to me that I was able to be with them when that news was delivered. They were so loving, calming, and compassionate. It meant the world to me.
And, while I was waiting to tell Ralph, I asked for prayers and positive thoughts from my friends…though I wasn’t able to get into details….and, without hesitation, the prayers poured in…..
And one stood out. A friend wrote: “Dear God….you know….Amen.”
It gave me great pause because, even as I sat anxiously waiting to tell Ralph, I felt the same way. I didn’t know what to say, how to say it, and what to be asking for at that moment. Should I ask for comfort – even though I clearly have much more to rejoice for than to weep over?
Should I ask for forgiveness – because I am angry that, once again, another obstacle exists in our lives?
Should I ask for strength – even though I know God always has provided it every step of the way?
Should I ask for wisdom – even though no matter how much I understand, know, or can express – nothing will change the reality we are facing.
Truth was…..no matter what I thought I needed to pray for….that statement kept running through my head reminding me that GOD knew what I needed, and He would give it to me when I needed it. And so, I prayed….and God Knew….
It broke my heart to tell Ralph that Will definitively has a diagnosis and that the diagnosis wasn’t good. I could see the hope crumble in his eyes and it just killed me to be the one to speak those words. Sometimes I wish we had some type of sign to show us the way when nothing makes sense anymore…
The next thing we needed to do was tell Will. He’s old enough to understand and smart enough to catch on…but HOW in the WORLD could I take such sweetness and innocence…
And saddle him with the weight of the truth?
He deserved to know and we had faith that God would give us the right words to help him understand.
And…when we sat him down and told him, the words came, and they were exactly what needed to be said…nothing less and nothing more. He embraced it with maturity and a sweet innocence that melted and broke my heart at the same time for I knew that the road ahead would likely be one that was not going to be as innocent or sweet as he is.
He knows what this disease is capable of as he’s seen those he loves dearly and friends he’s come to know battle valiantly, but Ralph and I assured him that he would never be alone on his journey, and that we would be tough when we needed to be, cry when we needed to, and laugh as much as the moments would allow.
And no matter what we would have to face…we’d learn to find joy in every sorrow
Cause even when things go downhill, how we travel down is up to us….
What matters most is that Will (and Sasha) knows this:
No matter what….as long as we have each other – we can get through anything.
And I mean….ANYTHING…..
You see, COURAGE isn’t about being strong or brave all the time…it’s about knowing what lies ahead and facing it anyway….even if you’re shaking in your boots. Will possesses that type of spirit and is one of the most courageous boys I know.
Courage is bravery in the face of uncertainty
But you see, to be courageous…you don’t have to face life alone – and there is no shame in needing help, comfort, encouragement, or a reality check…truly, there is strength in numbers
And while there was such an amazing outpouring of love and support for us as we tried to come to terms with our new ‘normal‘ – I can’t help but mention how much it truly hurt to NOT have the support of some of our friends and family when we needed it most.
I’ve felt this way for a while, but never have taken the opportunity to come out and say it plainly. Guess there’s no time like the present, right?
To all the people (and not any one person specifically) who have taken a seat on the sidelines watching my life play out like it’s some spectator’s sport….this is for you…..
I often wonder why people you share so much of yourself with can be so markedly absent when you need them most.
I wonder if you realize just how tough it is to face heartbreaking realities – and just how much it hurts when you are noticeably silent….
And maybe the news is hard for you to hear….
And maybe acknowledging it is too painful for you….(Imagine what it’s like for me? For Ralph?)
But no matter how hard you try to ‘not hear’ or ‘try to ignore’ – it doesn’t change the fact that the reality of what we’re going through exists…we are LIVING this reality, and we NEED you.
Maybe you’ve never had to deal with something like this….
Maybe you can’t be bothered because you just don’t want to deal with anything that isn’t convenient for you…
Well, I hate to break it to you – but LIFE happens…whether or not you’re ready for what gets thrown your way
I truly hope and pray that you NEVER have to fight for your life, the life of your spouse, or worry for the life of your child…
It is the worst feeling ever…
And I hope that, if you do….you will find the support that you were not willing to give us…
Until then….please do your best to not judge how we are navigating our way through this….
And I’ll do my best to remember that there are SO many other wonderful people out there who have been everything that you are not….and I will count my blessings daily for that. It is a priceless gift.
To all my ‘gifts‘ (you know who you are) – THANK YOU for always being there, never giving up, and forever staying true…..this was one of the hardest weeks of my life and I am so grateful that you were there with me through it.
Love and Light,