One of the hardest things about CVS is the waiting. Waiting for your beautiful child to come back from nothingness and pain. The days of an episode stretch on… a windswept beach with no end in sight. But you cling to what you know. Remind yourself that it will pass. Stare at the faint scribbles in the sand and will yourself to remember… she will come back.
Soon she will light up the sky with her brilliance… begin writing once again on your heart.
And your heart will soar. Storing away all the precious moments…
The wonderful laughter.
So that the next time, and there will be a next time, you can draw out each memory. Treasure it. Evulse hope from each shred, scrap, stitch. And assuage your broken heart with the credence that laughter does indeed await still… she will return.
parenting children motherhood kids sick day CVS cyclic vomiting syndrome G-tube feeding tube tube feeding nissen nissen fundoplication surgery SAHM
Update: Jacqui had an easier night last night and we all got a little sleep. I know there are several new readers that have recently come to visit, please know that I appreciate your kind wishes for our family and will come to visit you soon. And to you who have always been here, you fill my heart with strength. Thank you. I haven’t forgotten you all and will soon be back to see what you all have been up to. Thank you for keeping us in your hearts and prayers.
~ Michelle
March 19th, 2008 at 6:55 pm
She is writing in my heart even yet.
March 19th, 2008 at 7:47 pm
I haven’t been commenting, but I’ve been reading. I just wish I could come over and help and let you sleep. I wish I could meet the amazing girl I’ve come to love through your posts.
I’m hoping this passes quickly and that you all come out of it ok (especially you, mom)
March 19th, 2008 at 10:30 pm
Hoping and waiting with you. So glad to hear she (and all of you) got a better night’s sleep.
From Olivia: Hi Jacqui. I’ve been praying a lot here lately for you and I hope you get well really soon. Hugs, Olivia
March 20th, 2008 at 12:03 am
I’m glad that Jacqui is doing a little better. Still praying for all of you! Blessings and hugs!
March 20th, 2008 at 12:28 am
*poke* I see sunshine in those clouds…praying for the full sun to shine soon…
March 20th, 2008 at 1:16 am
Beautiful post. But please tell me you used a thesaurus…evulse, assuage, and credence all in one paragraph! ^:)^ I am not worthy.
March 20th, 2008 at 2:40 am
Elaine - Sadly, no… I grew up reading the dictionary for fun (thanks Dad) and am a self-professed sesquipedalian (Ken thinks there should be some sort of recovery support group for this). Or as Ken would say… “she’s a hoity-toity word nerd”.
March 20th, 2008 at 2:48 am
Oh, that was beautiful. I love this writing. I love J.
We see the neurologist tomorrow and I am going to beg for M to be weaned off the Topomax. It has helped with no vomiting but she is pale and sickly every day. Still having belly pain during it too. Then by three she is better. The Topomax is majorly affecting her mood. I can’t take much more of it.
Everywhere I read it says the spells last for up to 14 days or so. We are going on months. We wonder if we should go back to Cleveland Clinic? Or if due to chromosome disorder it will manifest differently for her?
I am thinking about and praying for J and you. Hugs. Thanks for all of your help and support.
March 20th, 2008 at 3:04 am
A beautiful post, Michelle… reminds me of the times where we ‘lose’ Jack for sometimes days or weeks to his anxiety. The times where his environment becomes far too overwhelming for him, and his aggression and meltdowns increase to the point where we are just desperate for our beautiful boy to come back… where we are physically and emotionally in so much pain - just so desperate for some sort of relief from it all…
… and they do come back… every moment we have is precious…
xx
March 20th, 2008 at 9:44 am
That was so beautiful, Michelle, even if I wish you had no reason to write it. I hope that Jacqui is starting to do better and that you won’t be waiting for her much longer this time. I love the photos you used here - such a sweet, precious little girl you have!
March 20th, 2008 at 1:08 pm
So glad she’s picking up, these photos are lovely……I’ve been sending you both vibes, I hope you got them!
March 20th, 2008 at 7:48 pm
Mic:
Please know that I always have you, Jacqui, Kyle and Ken in my prayers. The LORD be praised that she is getting better!
Love you guys lots!
In Him,
Isaiah
March 20th, 2008 at 8:55 pm
Awww! I can’t wait for her giggles and diva ballerina attitude to come back, too! >:D<
March 20th, 2008 at 11:03 pm
This here touched my heart so profoundly. I have no words to describe how I feel about what you and your family go through with this. It is completely unimaginable for me.
I am so sorry…. and sitting here wishing it wasn’t like it is. I do hope the sun will be shining through soon.
Hugs.
March 20th, 2008 at 11:24 pm
praying for Jacqui always
March 21st, 2008 at 2:22 am
Michelle my friend, I posted today, and I wanted to let you know I linked to you
March 21st, 2008 at 2:32 am
I’ve been praying, always praying. Feel better real soon sweet girl.
This post beautifully honors your precious Jacqui who, through your sharing, is our precious Jacqui.
Hugs, Jacqui. We’ll see you soon.
March 21st, 2008 at 5:00 am
Just checking on Jacqui. Still praying…
March 24th, 2008 at 10:22 pm