Skip to main content

not long...enough

Jonathan has been calling his parents daily.



Being so far from them has been hard on him. He wants to be there in person to offer comfort...but just can't.



So he calls...and listens...and cries with his mom...and steals precious moments with his dad when he's been able...



Including this morning. In route to work.



After they hung up he called me. On the home phone. Because last night we were fighting. We do that sometimes. I was so mad that I'd turned off my cell!



::smile::



So he reminded me that...



"We made up, Babe. You can turn your cell back on!"



I did. And he called me back two seconds later. On my cell. Cause our landline is one of those silly internet phones. And the connection can be sketchy.



I could hear the heart-break in his voice. It won't be long now. Hospice shared with his mom. She shared the news with him.



It's not that we didn't know. That we weren't starting to prepare our hearts.



It just seems like everything has happened so quickly. Too quickly...

Comments

JSmith5780 said…
I can't imagine how hard this is on the family. Can J take any more time to go see his dad?
Mama Skates said…
oh, i'm so sorry hun - continuously praying 4 u guys!!!

xoxoxox,
sharon
Abbe said…
my heart is breaking with you. know that you're all loved soooo much. big, big hugs to you all today.... god's grace will be sufficient for even this.
Adesta said…
Oh man. I was so hoping to hear that J's dad was doing a bit better. At this point, I know exactly how J is feeling. Sending lots of prayers and hugs your way.
Colby said…
Don't know if you knew this or not, but I lost my precious Daddy to a form of ALS a little over a year ago...It is so, so hard...Still feels like yesterday...We knew he was bad with his disease, but he actually got sick with resp. illness and passed away within three days...So, even after 8 years of preparing for the inevitable, it was still a shock and something I will NEVER fully recover from...But we DID survive it...And y'all WILL get through this...I am so sorry...Prayers are going up...
Anonymous said…
Sincere sympathy for your family's pain during this time. Praying for y'all.
Barbara
Danielle said…
Thank you everyone...for all your thoughts...prayers...and encouragement.

Jonathan wishes he could go...but the reality is Trevor may have surgery this year. And he's saving his time to be with Trev...and me. And his dad is on so many pain meds that the time he's "there" is very limited.

My parents will be keeping all three children so that we can go together to the funeral.

...danielle
Anonymous said…
(((((Danielle & Jonathan)))))))

...Dawg

Popular posts from this blog

a different kind of muscle — guardianship process

  To all the parents who have walked through the guardianship process — my heart is with you. Our paperwork is prepped and ready to submit this week. He turns 18 on April 3rd. I've been thinking about this for a year now, but only just mustered the energy to move forward — the loom of his birthday my propellant. Overwhelm has paralyzing effect. I'm struggling to recall the last time I didn't feel overwhelmed. It struck me how all these years of walking through disability beside Trevor should have made me stronger and yet... I suppose it's a different kind of muscle being developed.

No, I don’t know him personally

  I’ve had several emails today asking if I know Mike W. of Marissa’s Bunny personally.    Trevy’s blog was linked on her site.  Although it’s not now.     I’ve posted here and there at his request.  Because…well…we’re a community.  Us IS families.  And Marissa is wicked cute.  Her daddy has a way with words.  Also who wouldn’t want the world to know about an iPad give-away?    But aside from that…I know about as much as you do.    We’ve never met in person.    Our only communication has been cyber.    I’m a ginormous sap and as such would love to believe that all is right.  That the sweet, beautiful families who were promised iPads will be getting them tonight.  Tomorrow at the latest.  That no one has been lied to.  That the personal thank you for your generosity email I sent him on behalf of other IS families I’ve grown to love and was thrilled to learn w...

the great answer hunt in the land of Infantile Spasms

If I've said it once... I've thought it a million times more. How it's like the more I research...and discover...about IS. The more blurry everything becomes. For every answer found. A dozen questions are unearthed. Remember our whole ARX saga ? Yeah...that threw me for a loop. So much so...that I never went on to post the end of the story. Thus far... See...the unbelievable in the world of genes happened. Because this is IS-ville after all. After Dr. Genes sampled Trevy's ARX gene on a whim...a whim which revealed an unkown (meaning the first time this specific change was found) mild mutation...she proceeded to send Toby's blood off to mad scientist central. With assurances that this was totally unnecessary . She was convinced that Trevor's ARX mutation was the underlying cause of his Infantile Spasms. And that Typical Toby...would prove to be just that. Typical...at least in all areas mutate-able. And yet...Toby's ARX blood sample revealed THE SAME MIL...