To My Friend Who Just Received a Diagnosis for Their Child, I Will Be 'That Friend'


My dear and blessed friend,

As you go through this incredible journey, I want to let you know two things: first, I am so thrilled for you and so happy you get to experience motherhood right along with me; and second, I will be “that friend” for you. I will be that friend who knows what feels like complete darkness, who understands irrational fear, who has had the unspeakable thoughts, who can celebrate arbitrary milestones because the “baby book” ones don’t really apply.

Right now, you might be a scared mamma. You’re trying to make sense of a diagnosis and to anticipate what this new, unexpected life will bring. Here is what I can tell you:

You might go through days when you are scared out of your mind. Not in a typical “new parent” kind of way, but in a heart-wrenching, panicky, gut-splitting way. I will be the friend who understands. I’ve been there. I’ve shared those thoughts. I’ve cried those tears.

You might spend an unplanned amount of time in a hospital. You will stand in the tiny shower with tears streaming down your face because you don’t know what to do next. You will question your ability to be a good mother because you forgot to write down the name of every doctor you talked to. You will rub endless amounts of hand lotion into your chapped skin, dry and bleeding from so much hand-washing. I will be the friend who understands, the one you can message while the baby finally sleeps. Because I know what your other mom friends don’t. I know the feelings of inadequacy, the sting of having to wait another day before discharge. I’ve felt the physical pain of my child being stuck for the umpteenth time in a tiny vein, or being wheeled off to another lab for another procedure. I’ve been engulfed by the loneliness known to moms like us, forgotten just a little bit by our counterparts with their healthy kids sleeping comfortably in their beds, with baby monitors instead of heart monitors and penguin-shaped humidifiers instead of oxygen tanks.

You will become your child’s greatest advocate. But that might come after what feels like a very dangerous learning curve. You might feel stupid and question yourself more times than you can count. And then you will rise. I will be the friend who recognizes that path to knowledge. I’ve searched online till my contacts fell out because they dried up from hours spent behind a screen. I’ve called hospitals around the country for second and third opinions, even though our hospital is nationally ranked in the top three. I’ve stood my ground against doctors and specialists and nurses who assured me they knew best. And I was right. And I learned. And you will, too. But as you do, you will need support from someone who has learned and risen, and I will be that friend.

 

People will say, “every child has special needs,” and you might want to play that game. You might want to compare, but the tears won’t let you get the words out. You might want to throat punch them, but you will know they mean well and are trying to “normalize” your situation. You will hold in a hundred thoughts and tidy little inoffensive comebacks, but you will want to let them out later. And I will be there. I will be that friend. And you can one-up me all day long, and I won’t bat an eye.

And please hear me, nervous mama, you will have things in your head that most of your friends can’t relate to — acronyms to fill a three-ring-binder, helpful tips you may never get to share (make sure to tell the power company you have an oxygen tank; the surgery waiting room has the best coffee; when a lineup of docs follow you into the family update room, it’s probably not good news), terms that shouldn’t apply to children, much less your own (life expectancy, mortality rate, special needs trust, experimental treatment/drugs), smells that never go away. You will want to toss these into daily conversations because some days they’re all you think about. But you know you can’t. I will be that friend. I’ve heard those words, I’ve kept those records. I’ve looked around for people who need to know my vast wealth of information on one diagnosis and a bunch of complications. You don’t have to start from zero with me, and you won’t have to wonder if I can relate. I can, and I will. I will hold your hand, and I will listen to your trivia and to your fears. You can unload them on me, and I won’t be afraid.

This baby you’re carrying will change you. You will keep your friends and your support system, and you will have celebrations and fears that all parents have. We will all be there for those. But this baby will change your circle. You will feel isolated, you will cry, you might be ashamed of your thoughts. You will need someone who understands that without judgment. Let me be that friend. Let me get your three page text, and rub your slumped shoulders, and hold your cracked hands, and hear your broken sobs. I can do that. I will be strong for you. I will cherish the smallest triumphs with you because I know you fought for them. I will see beauty in all of it, and I will delight in your miracle.

I will be “that friend” that few will be able to be. I won’t minimize, judge or recoil. I will understand, from the very depth of my soul, how this journey goes.

And I will be there.

I will be that friend.

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Thinkstock image by Jacob Wackerhausen

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