To the Mama with the New Diagnosis

Hi Mama,

So, your kiddo just got quite the diagnosis, huh?  A disability.  Something you never think will happen to your family.  I’m guessing you’re either crying non stop, or numb and feeling nothing at all.  And whichever it is, the other is bound to happen any minute now. I remember those days well.

I could say a bunch of positive things: “Keep your chin up…” “God doesn’t give you more than you can handle…”  “At least now you know what you’re dealing with…” but I know from experience that it won’t matter.  Everyone needs to deal with news like this in their own way, and at their own pace.  So here is what I will say: Dude…that sucks.

That SUCKS.  No one asks for this.  No one asks for near impossibility in what should be simple developmental milestones, for never feeling 100% a part of the group, for having to refigure every aspect of the life you had imagined.  So take your time.  Cry, scream and curse.

But here is my bit of positive: you will be happy again.

I know it doesn’t seem like it right now.  I very clearly remember thinking I didn’t know how I would ever feel joy again; I couldn’t imagine, with all the extra challenges we were going to face, how the enormity of those challenges wouldn’t cast a shadow over every activity in every minute of every day for the rest of my life.

But the anger began to ebb.  Not all at once, it was quite the roller coaster – but you can’t have peaks without a few valleys.  Eventually, the roller coaster became a nice plateau, with the intermittent dips that are to be expected.  Then one day, I woke up with that comforting feeling of “happy” that I used to take for granted.  It was nice to feel that again.  As they say, life goes on.  And as I say, receiving a disability diagnosis for your child is a life changer, not a life stopper.

Figure out how to move forward.  Do all the tests and prioritize your therapies.  Ask all the questions, get mad when no one can give you a straight answer, and then do what you think is right.  And figure out how to still be you.  What fills your bucket – your interests, your marriage, your friendships, your career (or not).

I read and run.  My husband and I are very active with our kiddos, and in supporting each other.  Life is busy, but I have a solid core group of friends I draw immense strength from (thank goodness for text messaging).  And I found a company that keeps me challenged and energized while being flexible enough to allow for the things my family needs.  These pieces didn’t all fall into place at once, and will need nurturing and adjustment, but they did fall into place.  They will for you, too.

That doesn’t mean to say something won’t happen to throw all this in a tizzy next week. And by no means do I want to imply that this will be easy.  Just last night, I read my daughter’s most recent preschool report; the most positive thing in there was that she is steady when she sits on a chair.  That’s fine.  While seeing the words on paper is jarring, I need those reports to be accurate.  Today, I will go in and ask how we work to make it better.

So Mama, take your time.  I don’t see any point in rushing yourself through what is a necessary adjustment process.  Be mad and confused, be lost and unable to understand, hate the world.  Just remind yourself, in the moments when you can stomach a bit of positive, that the light in your life won’t always be that dim.  You will be happy again.

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3 responses to “To the Mama with the New Diagnosis

  1. Sophie


    Thank you so much for the post you wrote for me. The morning I read it I cried so much that I could not finish it, but the morning had to start anyway … and then every time I tried to write back, I read it again and the same thing happened! I am writing back to you full of emotions. I don’t have a lot of time to cry in my life since I am very busy; I work a lot and with Leo’s appointments and therapies, life goes on. It is more when I can finally relax that the unknown scares me; sometimes I even forget Leo’s diagnostic but when I see other kids… the reality of his condition hits me again. I try not to compare him too much against others, but every report from his therapist shows that Leo is under the 5% percentile for almost every aspect of his development.

    I will definitely take your advice and I will take time with my husband to talk. For the moment, we are more in the acceptance phase. My husband Alex seems to finds ways of coping by planning projects for the future; he wants to build us a new home! I try to live my life as normal as possible, similar to you, we go everywhere with Leo. Those activities make me feel so good. I have difficulties talking about this with my family or friends because I get so emotional. It’s hard to talk about it. I often prefer responding to their questions by telling them about all the efforts and progress Leo has accomplished.

    I just wanted to thank you from the bottom of my heart for the time you took to write to me on your blog.


  2. Lukas


    I’ve just found your blog. Me and my wife have a daughter with trisomy 12p. She is now 11 months old. Can you please contact me via e-mail? I have so many questions. Probably some of them are already answered on this blog but i didn’t had time to read everything.

    Thank you!

  3. Amen. My advice to new sn moms is to feel those feelings. Don’t feel guilty. But don’t get buried in it. Don’t let it steal your joy.

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