After hours of pre-op and waiting, I insisted on coming back to the operating room with her. It was a small room with 7 of us crowded in and a whole lot of equipment. Before I knew it I was the one holding the gas mask over my babies face to get her to sleep. I have seen the same look on her face many, many times but her “mom why are you letting them do this?!” seriously breaks my heart every single time. Once she was asleep they repositioned her limp body and I left the room while they started an IV to administer full general anesthesia. I walked down the hall in tears but composed myself once entering the waiting room. I waited a long 30 mins while Riley was receiving 110 injections in her left fingers all the way up to her left shoulder blade and pectoral muscle for here cerebral palsy and in her salivary glands for her drooling.
When I sat down in the waiting room I was two chairs away from a quietly crying Mom. She was there by herself like I always am, which is unusual in those circumstances. Of course I started to talk to her and try to comfort her. She was a pretty new special needs Mom. Her son was almost 1 years old and had Down syndrome, a heart condition (like Riley) and asthma (like Riley). We talked for a little while about why we were there and then what this journey is like and how the Lord will carry her through, just like he has carried me. With pain in her voice that I recognized so well she said to me “Please tell me this gets easier! This has to get easier!” My response? “Do you want me to lie or tell you the truth?” She waited, then said “I don’t know” and we both got quiet in our reflection on just how hard it all is. She finally almost whispered “I want the truth.”
Unfortunately my answer was no. This does not get easier. You learn how to do things. You know what to expect. You figure out your routines and shortcuts. You begin to make friends with nurses and other parents. You learn the lingo and what is the best way to do things for your baby. You figure out what you should put your kid through and what’s not necessary. But unfortunately the part of watching one of the most precious things on this earth to you go through so many hard things does not get easier. Watching your baby feel pain, feel fear, be mad and struggle through endless doctors appointments, examinations, blood draws, procedures, and surgeries definitely never gets easier. And I don’t think it ever will. But I testified the Lord will give her strength. He will inspire, comfort and lift. He will watch over your baby when you can’t. And He will be with you and unquestionably with your special child ALWAYS! That is what will get me who has been on this journey over nine years now and this sweet Mom who is just beginning through. But unfortunately it doesn’t get easier.
The other things that help? Your child’s inevitable strength, their smile and absolutely their love! And most definitely the love and support of so many family and friends! Just like Gramas and her visit with Cinderella balloons! Do you see that little girls face? Strength and resilience personified!
My conversation with this Mom was definitely a full circle moment. And I had another one of those last night. It was magical to see a sparkle in both my girls eyes last night as they watched a beautiful production of the Nutcracker. It was so similar to the one I used to watch as a little girl and LOVED. We had a really great mother/daughter night with Miss Tina and Avery and got to see some seriously cute Scotties in the show!
Creating fun memories with my girls is by far my favorite thing to do! And we have been doing lots of creating around here lately! Keagan is currently obsessed with kid cooking shows and is doing some experimenting of her own in the kitchen! She has come up with some amazing concoctions for all of us to try! She’s the cutest cook I know!
She is also so good at creating pretend scenarios with her sister in order to avoid chores! She’s smart and knows I’m a sucker for sisters playing great together! Here they are in their grocery store.
And Riley has been busy making fun things with her class! Her teachers have done the absolute cutest Christmas projects! And yes she is currently obsessed with that Santa shirt!
The girls both created the cutest handprint angel craft and darling ornament with their picture in it at our awesome monthly visit to rEcess at Faithbridge for special needs children and their siblings! It was a lifesaver after a long day of mommy not feeling great with an upset tummy. I’m pretty sure it was pure exhaustion, so I was SO thankful the girls still had such a wonderful Friday night!
Like always, we love creating and cherishing our friendships! Riley and Noah make the cutest elves EVER! And Keagan just loved having a fun play date with her besties Avery, Audrey and Lauren!
Of course momma has been busy doing her own creating. That looks a lot like creating long December to do lists, creating our yearly Christmas card which I always LOVE, creating Christmas money by selling lots of old stuff to consignment and on FB, creating order out of messes and chaos, and creating the Christmas spirit wherever possible! Stay tuned with a post about Elmer the elf’s super fun antics this year and the awesome experiences we are having to #lightheworld!
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