wow. just wow. sometimes life is soooo cruel you can be left just breathless, numb in the brain in & in so much pain you don't know what to do.
That's when you call your sister. It's a long story...
A couple of years ago, i opted for implants in my mouth. I have fought these horrible teeth my entire life..braces, fillings, partials, crowns, root canals...you name it. So when my aging teeth started to act up I decided to just replace them...now? i don't have to deal with this for at least a decade.
Well, at least I thought so, until just before the holiday. Yep..lost a crown, and had horrible pain. I didn't think a crown could cause that kind of misery, so i thought maybe i had a sinus infection.....allergies have been a real pain this year. After a couple of days I realized...IT WAS THE IMPLANT! Danged thing was loose. AUUUGHHH!!
Had to wait till the Monday after the 4th to call the doc...they would see me the next day. Nope, it'll have to be Wednesday, I'm already booked for Tuesday with Dad's appt's.(The timing will be important later)
Then? I had received some really disturbing news from the western edge of the state. My online friend Leah Baker in Joplin's girl Ashton, just turned 23, and was really ill. Leah and I have been friends forever...in 2009, Ashton was elected homecoming queen at her school, the first as far as i know, and Leah got involved in FB, so things really took of for us!
Ashton, being nearly a decade older than my Molly, also enhanced with Down Syndrome & Autism, was always a source of hope, entertainment, and a peek into my own future. She had recently been diagnosed with early onset Alzheimer's also, which was heart breaking, but I had really not witnessed any of that. She was still the same ole, sweet and sassy firecracker of a girl...just like my molly.
The way her mom interacted with her taught me about humor, acceptance, and of course, the unconditional love that only a parent of a child with special needs can know. Leah was so involved with activities with Ashton, it put me to shame...i tend to wait for the backup of big brothers when deciding on big activities with molly as she is strong enough now, if things go south, you need to have a couple of he-men around to get her up and moving again. Not my brave Leah...she just went for it.
Monday, Leah went to check on Ashton, and she was complaining of a tummy ache, a bad one. Now, as parents of kids with DS know...when your child is complaining of pain? IT REALLY HURTS. Molly would almost have to break something before you understood she was 'hurt, boo boo"
Leah, immediately took Ash to the Doc, (caregivers had said "probably just a virus") but mom knew better, and then the doc also was concerned and sent them into the E.R. for some testing...routine routine routine..and then? the world tipped a bit.
Ashton's oxygen sats dropped...low...dangerously low. They are trying to run every test available to figure out WHY WHY WHY...but then she dropped way too low, and they were forced to try a bi-pap with her. (a bi-pap is a full face mask that BLOWS oxygen in, forcing your lungs to accept it. It's VERY invasive but does the trick)
Let me insert here, that this is the same route my mom was taking in Dec. A crash...an unexplainable crash. It would happen occasionally, but, with her, a couple of days inpatient with fluids and all would be fine. In my heart I was hoping that this would be the same with Ashton.
So...back to Wednesday. I have to drive up to Springfield because I live in the woods. If you want access to something a special as an implant specialist, you have to travel a bit. I'm pretty irritated about having to make this trip, but started thinking and looking at google maps and see that Joplin is only an hour west of Spg and begin to toy with the thought of running on over. Sent a message to Leah making sure it was ok, and to get the name of the Hospital.
Ashton couldn't tolerate the bi-pap mask & high pressure of it, something I understood as well, as neither could my mom. Leah had posted that they had to vent her (always scary...even just the word) and I expected to walk into an ICU room, and dive back into bizarro hospital world. I expected to see a comatose young woman, and hear the irritating sound of the whishhhhh of a vent.
When i did walk in, Leah had stepped out, Maw maw was sitting next to Ashton's bed, head down ...and as my eyes moved up to gaze at this girl i have come to love ...and preparing myself for the worst??? I saw something else. I saw the child with vent installed, but she was not unconscious. In fact, she turned, looked at me, eyes lit up and smiled and her little hand moved up and waved.
All my apprehensions disappeared as I also broke into a grin, and startled maw maw because i was ELATED to see she had made that turn...the turn for the GOOD! WOOHOOO LOOK AT YOUUUU!!
We chatted and yes, Ashton had indeed popped out of the dark and back into our world, and she was a bit irritated with her current circumstances. Some candy striping boob came in with a tray of food and left it in the room..Ash started pointing at it and getting VERY excited...we had it removed immediately, but it warmed my heart that she was hungry. She got just as excited when the doc was in.....there was a pizza commercial on TV she kept pointing out....she was STARVING. She looked right at her doctor and signed "finished" The three women laughed because we knew she was saying she was ALL DONE with this situation. Get this hose out of my throat, get me some food, and then DISCHARGE...i wanna be HOME!
Doc was just as happy, and told us he would get that tube out pronto. He wanted to leave her in ICU for the night, just to make sure, but that she would travel to a regular room in the morning if all went well. The extubation got postponed for another emergency in the ICU, in the next room so we were aware it was going to be awhile.
I sat with Ash for awhile...reaching to rub her palm...something that settles my molly right down, and the last thing we do at night to help her drift off. They confirmed that that was also Ashton's sweet spot. She kicked off her sheets and got a foot rub, too. We laughed over the few words our two girls used, but the demand that came with them. When molly wants me to take a second and really listen to her, or wait for her, she says "MaMinute" (one minute) Leah tells me Ashton puts one hand out, the other on her hip and says "FIVE minutes!"
Either way, we both know we need to take a second and that it is IMPERATIVE that we do so, NOW!
She grew tired & was still upset about being hungry, asked for the TV to be turned off...and i decided to make an exit as I didn't want to be a source of busy to her if she needed to rest. Besides...i also had exhaled a deep sigh of relief knowing that she was going to be OK. She got to be extubated eventually, and she got to eat. YAY!
Up until this moment, there was still no reason for her crash. They had been in process of testing when it happened but had to react instead of being pro-active. No one even imagined what was coming.
By the time i got home there were messages...Ashton was again in danger. She's spiked a fever and was declining fast....and then the doc revealed the news...the same news the doctors had told me last November.. We're sorry...but she's just giving out. Her body can no longer sustain life without serious intervention. When the heart weakens, the o2 weakens, and most organs will follow suit. Now, mommy, who's whole life had been dedicated to sustaining this precious, fragile life.... had to make decisions on how she wanted this life to end. This falls into the category of "things that parents should never have to do"
NO NO NO!!!!!! IMPOSSIBLE!!!! 7 months ago i felt exactly the same panic, but that was with a woman that was 86 years old and had been on dialysis for 4 years...NOT A 23 YR OLD CHILD!! this can't be happening!! My mom got to orchestrate her own decisions...i didn't have to do it for her. This was WRONG on so many levels!
Shortly after that? Leah messaged that Ash was now on comfort care, and my heart and brain came together to try to accept that this really was happening...to try and offer comfort to another mom. There was no comfort to give as Ashton passed away within hours, just like my mom, surrounded in love and in peace....she just went to sleep.
I surprised myself when the grief that I had stored for the past 7 months came SCREAMING out of my lungs...I can't ever remember crying that hard. All of it...all of it erupting from the depths of my soul. Inconsolable, i called my sister. We've been tag teaming each other thru too many tragedies since losing mom. She came through for me, too.
She, a woman of faith much stronger than my own, started with my implant problem. "Do you really not see how the circumstances unfolded? You've been a hermit for 7 months. You haven't even ventured into the back yard. SOMETHING had to motivate you out of the house, and that would have to be pain, as you weren't responding out of duty, need or desire. Your implant loosened because on Wednesday...not Tuesday, not Friday, but on Wednesday, you were suppose to be in Joplin. You wouldn't have gone had you not already be in Springfield, right?" and then she cried with me. Her mommy heart was also breaking for a family she didn't know, but that doesn't matter when it comes to moms and kids. She cried for my pain, for Leah's pain, for her own pain. We cried for our combined breaking hearts and how unfair this world is.
So, as I muddle through this everlasting grief process I will give pause and wonder if God was really working.with me. However it happened, I got to be with the Queen, and her dancing eyes, and her delicate little hands and feet. I got to witness the devotion of her mom and Grandmom, and was schooled in what is important in this life.
This morning molly got up at 6am. She didn't care that I hadn't really slept, that my eyes are swollen and red, and that i feel like I could stay in bed for the rest of my life. She said "eggs, toast, fork" and I rolled over and gazed at her beautifully shaped almond eyes. I responded with "hugs and kisses first, and then breakfast" and got myself moving. Thank you, Leah. Thank you for sharing your child with me...your child, your humor, your attitude, your example, your parenting experience, all of it. It hurts...it hurts bad, but i feel Blessed to be able to walk this path with you.
We love you....we all love you. Every mommy seeing this across the country, across the world. We wish you peace. And we will cherish the memory of this perfect child forever.