“It’s not what I pictured…it’s not what I wanted…”
I blurted this out at a support group for special needs mamas last night. Immediately, I wanted to take it back. It was my first time at this group and all I could think was, why did I say that?! Ugh. These moms are going to hate me.
What I meant was, this isn’t how I pictured the hubs and I getting pregnant, conceiving a child, and becoming parents. This isn’t how I pictured the first year of being a mom.
I still think about that box sitting on the top shelf of my closet, full of needles and syringes and gauze pads that I used during IVF. How I had to pull that same box down and use it on my son a year later, after he was born and we had to give him injections to stop his seizures.
Am I living in an alternate reality? This isn’t what I signed up for.
We’re all a little caught off guard by what we picture our life will be like vs. what reality throws our way. I don’t believe any woman who has experienced infertility or mother of a child with special needs ENVISIONED this for her life.
She didn’t picture the folders of handouts and timelines from the IVF clinic that would be reviewed over and over again to make sure she was giving herself the right dosage of the right medication at exactly the right times.
She didn’t picture becoming a nurse, carefully mixing medications and drawing them into a syringe to inject into her body.
She didn’t picture buying fun bandaids to cover the bruises on her stomach or inspirational socks to wear for ultrasound appointments because she had to find at least one thing to smile about.
She didn’t picture witnessing the number on her savings account dwindling before her very eyes, with nothing to show for it except doctors appointments and shipments from the specialty pharmacy and sleepless nights tossing and turning in pain from ten or twenty eggs growing in her body.
She didn’t picture the waiting room before the retrieval, lying in anxiety because she knew how long ago that trigger shot was and praying those doctors get those eggs out before her body released them.
She didn’t picture the waiting on the phone from the doctor’s office while they told her how many eggs were retrieved, how many were fertilized, how many didn’t make it, and how many may/may not make it to be blastocysts.
She didn’t picture the joy of a transfer day, when she knew they had one or two healthy blasts and she may, finally, have a baby!
She didn’t picture the soul-crushing blow of not making it to transfer day, because there weren’t enough healthy eggs left to transfer.
She didn’t picture conceiving a child, and the nail-biting phone call from the doctor’s office after the 2ww, saying it was a BFP!
She didn’t picture the heavy grief that followed an unsuccessful conception and the call from the doctor saying…”Unfortunately…” because after that, it didn’t matter. She already knew the rest.
She didn’t picture the grief of conceiving, carrying, and delivering a healthy baby, and then learning of a child’s critical health condition that was totally out of her hands.
She didn’t picture traveling to hospitals all over the country and the parade of therapists in and out of her house on a weekly basis, leaving little room for privacy or independence.
She didn’t picture how HARD it was going to be to advocate for services for that beautiful child and how difficult the struggle was going to be to get those services in place.
And just like her, I can’t say ANY of this is what I had “pictured” for my life. But I did it, and you can, too. Whatever obstacle, whatever challenge…you can do it. When life throws something your way that is completely opposite of what you pictured, it’s hard. And it’s ok. And in the trenches of it, it feels lonely.
But on the other side, you will appreciate it so much more. One of the mamas from the support group last night said those very words. And she said, “Other people may miss those milestones, and life will just happen so fast with soccer practices and dance lessons, that they will turn around one day and it will be gone. But you, YOU will celebrate just the simple fact that your child can hold a spoon.”
This is so true. I can watch it all unfolding before my very eyes. I can see how much I appreciate the little things, like when he can scoot around in a circle on the floor, or stand up on his AFOs and take steps supported.
I wouldn’t change any of it for the world, because I have Alex. I have this joyful, happy child from God and I thank Him for this journey, for my son, and for the way this has strengthened me as a person. And I’m so proud…so incredibly PROUD of Alex for all he’s doing and learning and what’s he’s overcome.
I know we could have lost Alex from the stroke. I know other mamas that have lost their children and would be forever grateful for their babies to be here – therapies, doctor appointments, medications – and all. I am not naive to think that it’s very possible that could have been me, too. That there is a chance Alex might not be here at all.
I hope that today, whatever miracle is in front of you, you take a few minutes to watch it, appreciate it, and thank God for it.
We can’t picture what tomorrow will bring, just like we may not have pictured our pasts and how life would unfold, but we can all savor the joy of our journeys, the gifts that have been bestowed upon us, the beauty of our children, and the perseverance and courage to keep going.