Happy Mama Day!

Steve here – in honor of Mothers’ Day I’m finally going to make my long-overdue contribution to this blog. I’ve been trying to write my first post for months and haven’t been able to come up with the right topic or words, so I figured that this would be the perfect opportunity to share a little about how grateful I am to Ann for how amazing she’s been, not only as a mother but also as a wife, through our journey over the past couple of years.

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It’s always been the case that Emmett doesn’t interact with people the same way as most kids; he doesn’t usually maintain eye contact, he doesn’t track objects well and he doesn’t talk. But he does smile. On those occasions that he smiles – sometimes he goes days without smiling, while other times he spends most of the day beaming uncontrollably, and sometimes he smiles the most while he’s sleeping – it really does light up the room. For me, Emmett smiling is our equivalent to a ‘normal’ kid standing on his head and juggling – if he’s smiling while I’m holding him, I might take a million pictures and then call Ann into the room, and she might call her mom into the room, and we’ll all sit around staring at him smiling and it’s the best thing ever. It never gets old; once Emmett starts to smile, you can’t help but follow his lead and smile back at him.

It’s pretty unpredictable, but overall he tends to get more agitated at night, so sometimes when I get home after work all I see is fussy Emmett. Luckily, Ann takes it upon herself to send me pictures and videos of him during the day so I don’t miss out on his happiest moods. The videos are the highlight of my workday – they’re usually more than a minute long and sometimes much longer than that, and it’s all about Emmett smiling and interacting with her.

A funny thing that’s come out of making these videos is that Ann has become the voice for Emmett. Mostly she’ll tell me, in baby’s voice, what Emmett would want to tell me if he were able to communicate.

“Daddy! Daddy! Daddy! Why aren’t you home yet?” he’ll say (via Ann)…so then I’ll have to finish up my work and hurry home so I can see him.

“Daddy! Daddy! Why aren’t you holding me??”…and then I’ll have to drop whatever I’m doing and go pick him up.

“Daddy! I’m hungry!!!”…so I’d better scurry to the kitchen and get his milk.

Now I find myself also talking for Emmett, since he doesn’t have the ability to talk on his own, at least for now. I sometimes find myself forgetting to interact with him, since I don’t get an obvious response from him, but Ann is so good at just talking to him and having him respond, even if it’s through her voice. By giving Emmett a voice, a means to interact – whether through Ann’s voice or my own – we’re able to more actively play with him and stimulate him which in turn can only be good for his overall development.

Creating this voice for Emmett is just one of the many things I’m grateful to Ann for. I suppose I always expected her to be a wonderful mother, but the strength she’s shown throughout our time with Emmett has amazed me. Being on top of all of his medical needs from meds to hospital visits, and always maintaining the strength and energy to ask the doctors pertinent questions even when we’re completely drained after days in the hospital. Coordinating his various therapy appointments on a daily basis and working with him outside of therapy to continue to progress his development – and building this incredible little room for him. Driving our research, fundraising and family outreach efforts, much of which all came together around the time of this year’s CDG conference. And of course, updating our friends and family on this blog and generating tears from anyone reading posts like his two year birthday post.

Enough of my words – Emmett has something he wants to say…

Happy Mother’s Day!

Love,

Steve + Emmett

3 thoughts on “Happy Mama Day!

Add yours

  1. Hi I was reading the story of your son Emmett. I’m sorry for what you been through. I know how hard it is. I have a son name Fernando with the same mutation disorder as your son. He will be 3 years old on November 1st. We have been in and out of the hospital sinse he was born and he bas had multiple surgeries. Our lives have been a rollercoaster. God bless Emmett and you.

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    1. Hi Edna! Sorry for the delayed response. Your son also has a PIGA mutation? How is he doing? It really is SUCH a rollercoaster… I hope you have good support on your end. If you aren’t connected to any PIGA/CDG facebook groups, I can definitely refer you. Let me know!

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