Never Again {The Story of Fighting for My Daughter}

Dear Quinn,

My love. The child I prayed so desperately for. The child who I would do anything for. I promise you this…NEVER AGAIN.

I have to tell you, Quinnie. I have been in a FUNKY space this week. Definitely #firstworldprobs — momma’s phone wouldn’t work, our garage door broke, and I had a crazy hive/rash/swelling thing that took over my face. I was consumed by it…by the first world problems.

Then I got the call.

Actually a voicemail. {Seriously.}  Confirmation of what I’ve known for so long now.

You have dyslexia. 

You also have a speech disorder. {Actually I found that out the day before.}

It hit me hard and fast and I had just about 2 minutes to recover before picking you up from school. 

I didn’t know what to say to you. 

I know you know Momma was upset. I’m sorry I didn’t hide it better. I never do a good job of that.

Here’s the thing, sister. I’ve known this was happening for the better part of a year. In fact, so much so I requested for you to be tested for speech therapy wayyyy back in September. They called me in to sign a bunch of paperwork and Momma got overwhelmed. I signed it anyways. It required a full-blown test of everything from hearing to vision to speech to LEARNING DISABILITIES and IQ.

Then a couple of days later, I got a call from one of the speech specialists at school. She thought we should try a different sort of intervention first before throwing you into all that testing. Basically in classroom help and then Daddy and I working with you at home. That sounded better to me and less invasive. So I revoked your other paperwork. 

Darn it.

My fault. 

I don’t have to spill at the details here but Mommy wasn’t happy with how the in-class interventions were going but I figured the school knows best, right?

Turns out they don’t. Not to any fault of theirs, let me make that VERY clear. They don’t know best because I KNOW YOU BEST. I know every inch of you, every highlight in your hair, every birthmark on your body. I know what makes you happy, I know what makes you sad, and I know what makes you frustrated. I know your heart. I KNOW YOU BEST.

I fought for you again in February when it became clear that you were falling behind. Again, I’ll leave out some of the details but I had to beg to get you tested. See, honey, you have some amazing coping mechanisms. So somehow, someway, you have found a way to “read” the way you see it and keep your grades up. I’m not surprised. You’ve always been a fighter.

So we began the testing. By the way, sister, you have handled that like a champ. I couldn’t be more proud of you. And you LOVE the rewards of working hard. Gifts is definitely your love language. Momma can relate.

Today was confirmation of what I’ve known for awhile now. While I am grieving {not your fault, just I wish so much I could take this from you}; I am more mad at myself than anything. I feel copious amounts of guilt. I should have fought harder. We lost SIX MONTHS. SIX. Mommy forgot Parenting #101. “Follow your Mommy Instinct”. I followed it when you were 3 months old and I couldn’t console you. I knew something was wrong and it wasn’t just that you were an unhappy baby. Turns out they mixed your acid reflux medicine wrong. Mommy found the mistake.

I followed my gut after your first open heart surgery and things weren’t coming together as they should. You were so very miserable. And we were in and out of the ER for a few weeks. I finally put my foot down and said “we’re not leaving until you figure out what’s wrong with this child.” And they did. They found out that somehow the patch had blown off your heart due to a spike in blood pressure and you were literally in right heart failure. You were dying before our eyes. Mommy fought for you then.

But Mommy forgot all of those lessons this past year. That no matter how smart, how many degrees on the wall or fancy letters behind their names, NO ONE knows you better than I do. I’m sorry I didn’t fight harder, earlier. But I promise you this. NEVER AGAIN. I will not forget this. I don’t go in looking for battles but when it comes to my kiddos and their livelihood, you are going to win out every time. EVERY TIME. Hear me when I say that.

I won’t fail you again.

Sister. I don’t know what this path looks like for us now. But I’m also reminded that I didn’t know the path we would be taken on when you were diagnosed with a Complex Congenital Heart Defect just 22 weeks along in my pregnancy with you and your brother. And yet… we did that. We have somehow survived that and not only, survived but thrived. WE will get through this. It’s life-changing, yes. But it does not, will not, will never ever ever, DEFINE who you are. You are my beloved. You are the apple of your daddy’s eye. You are QUINN.

Never again, Quinnie. Never again. Momma will fight for you every dang time.

Love you to the moon and back {and up to the stars}.

Love, Momma

 

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3 Responses to Never Again {The Story of Fighting for My Daughter}

  1. Lori Jones April 15, 2018 at 8:37 am #

    Wonderful post! Don’t feel guilty, momma! We’ve all been there. Riley (age 12) also has dyslexia (and CHD). If it weren’t for her awesome first grade teacher who fought for her and taught me to fight, I’m not sure where we’d be. We are rooting for Quinn! Wilson reading program and a tutor helped us! (Bota wine boxes helped me!) xoxo

  2. Kinsey
    Kinsey April 16, 2018 at 8:43 am #

    You did NOT fail her! Clearly, you have fought for her again and again and that six months will mean nothing so soon. Love this as a reminder to always follow our guts.

  3. Megan April 19, 2018 at 1:19 pm #

    Thank you for this post. I’m in a situation too where one of my itty bitty’s need me to fight for them too. I have had family members, a “friend”, and even a dr fight my gut feeling. It has been awful. I was close to giving up too. I started questioning my intuition. I feel awful saying that, but just this past week, we finally made some huge progress on the issue and my little one is going to get the help he needs. For us, it meant switching pediatricians. (We switched to TX Children’s btw and love them!) Moms, always always always listen to your gut. If something feels off, it probably is. It’s better to fight and be wrong, then to not fight and be right. Time is so valuable during development. GL to all the fighting mamas out there.

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