An open letter to my healthy son

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My dearest son…

How is it that tears fill my eyes before I even begin to write to you? I can only guess that it is because you hold the key to my heart like no other person ever will. You…my precious, precocious, beautiful son…ARE my heart.

Now, I can imagine parents out there who don’t have a child with a life-limiting illness may read this letter to you and think “Oh, this is the way we feel about our child/children, too.” But Declan, I can assure you, no it is not. As you know, my wise 7 year old son with an old soul to be sure, this journey we are on changes EVERYTHING about life. Everything.

From the time you were an infant and I would lay you next to your big brother Brendan, you would smile up at him in a sort of tender recognition. As the months turned into years, your bond with him…your unconditional love for him…has made me stop in my tracks in awe. I’m smiling now as I type remembering last month you said something to me that I will always hold dear. You were matter of fact but you were also clearly keeping my feelings in mind. You said, “Mum, I hope it’s ok, but I love my brother more than anyone in the world…even more than I love you.” How you melted my heart at that moment! Yes, my love, it’s absolutely ok that you love him more than you love me. Please, please do. Because as you know, as we have gently discussed on far too many occasions, your brother won’t be with us in this life for very long.

A couple of months ago when Brendan was in the hospital for 19 days, I bought you a mood ring at a local shop. Must be the old hippie in me coming out, right? I will never forget later that afternoon when we were hanging out in Brendan’s hospital room, you walked up to him, took off your new mood ring, and placed it on his finger. You said, “Here Brenny, this will make you feel better because it’s on the happy colour now.” Have I told you just how much you amaze me, Declan? You have THE most compassionate heart of any child I know!

Last week, for the (I’ve lost count so let’s just say 50th) time, you stood by your brother’s side as his body seized out of control. His body convulsing, his lungs barely breathing, his skin losing the warmer colours and turning to blue. You said, “Come on Brendan, we’re right here, it’s ok.”
And you held his hand.
And you laid your hand on his head.
And you said how much you love him.
I saw every single second of it while I stood right next to you as I monitored your big brother.

You have seen paramedics at midnight rush into the house to tend to your brother. You have seen your brother taken by ambulance lights and sirens going off down the road while we followed behind. You have seen tubes and masks and IV lines in your brother’s hands and feet often all at the same time. You have been to so many x-ray appointments for Brendan that you now just walk behind the screen and hang out with the x-ray tech, knowing that’s just where to go…and that there are usually a great supply of stickers to be found there!

And you have sat with me, quietly, when I simply could not hide my tears no matter how damn hard I tried. You have taken on a sort of caretaking role unknowingly, but so very acceptingly, and you are innately mastering it.

I know, my sweet and tender child, that much of this is not fair for you. So many times in your life you have already had to sacrifice by not being able to go where you would like or when you would like because Brendan simply wasn’t able for it. So many times you have cried because of those sacrifices. But hear this promise, Declan, and let it soak in…Everything you miss out on, everything you do for your brother and for me, every loving word you say to your brother, it all stays with me. It is emblazoned upon my mind, my heart and my soul, and I promise you, it will all be made good. For you are growing into the kind of man that will make the world a truly better place. You will impart reason, compassion, sensitivity, and great love in whatever you choose to do. My promise to you is that I will never, ever, let the struggles of this journey turn you away from the beauty that you are learning on this journey. You WILL be all that you can be. And that, my son, is everything.

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8 thoughts on “An open letter to my healthy son

  1. Tina Zagarella

    What a amazing letter. What a special person it takes to realize or stop to recognize what the other child is going thru . Especially when you’re days must feel like a constant tornado .These two children are truly blessed to have you .

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  2. Thank you so much for sharing your words & your boys with the world. I’m a mother of two miracles, Hannah (3) who has many medical complications, & James (1) who is my healthy fire cracker. Reading your blog & this open letter in particular has me crying because I feel every emotion that you’ve written & have had so many similar situations. There’s so much I wish I could do for both of my children but I don’t, because “sissy” isn’t feeling well & lugging around her ventilator, feeding bag, oxygen tank & so much more, it isn’t easy. But, when “sissy” isn’t feeling well, little brother will climb into bed with her & give her kisses & pet her leg & say, “K sissy? K?” He even passed me the suction tubing so I can suction out her trach. He’s so sweet & always jabbering away to her & I wish she could talk back to him but since she can’t, she’ll smile & blow kisses instead. They’re 17 months apart & already really close. I hope we get to have them grow up together for a really long time but we never know how long we have with her. Anyway, I didn’t mean to make this so long but it’s hard to find other parents who can fully relate to my home situation so it feels really good to share. Thank you again for sharing your thoughts & your boys. Your family pictures are beautiful!

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  3. Laura

    I don’t want to say the wrong thing. I just finished reading this and the tears just won’t stop. God bless you and your sons. You are such a wonderful mom, and your little one will surely grow up to be an exemplary man, for everything he’s witnessed. I wish I could just give you a big hug and tell you, you are not alone. I am pregnant right now and I think about this child I’m carrying and when I read about your journey it just makes me live my unborn child even more. It makes me think that if she was born with any life limiting illness I would love her and take care of her just as you have with your sons. I just hope to be as great as a mother as you have been.

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