Battles against terminal illness, anxiety, and life!

Excellently Stated

Please note this post was NOT written by me.  Rather, I’ve snagged it, but giving due credit to the amazing Jessica, fellow A-T mother and blogger, over at  All Tied Up. WordPress is being a pain, so here is the web address:

Please don’t just read this excerpt.  Head over and say hello to the amazing author!  I couldn’t have written this post any better, and so I didn’t.  It was so well said.
Preparing for our trip.  Cleaning, packing, organizing, overwhelmed.
Woke up to Nolan throwing up this morning.  Thought that would be the worst part of my day.  While it definitely wasn’t the way I saw myself spending today, cleaning up sic & terrified that more of us would get sick as well all while preparing for our trip to Disney World, it still wasn’t the worst part of my day.
We are pretty much ready for the trip & I was checking my email & Face book this evening reading funny status’ & catching up on what friends far & near have been up to when I noticed a comment of sympathy from one of my fellow A-T moms to another.  i have been rather hit & miss on FB lately & so had missed a very important detail.
Sweet little Tate “S” of Iowa who had successfully battled cancer & also happens to have A-T.  One of 3 kids total & one of the 2 A-T kids in the “S” family household.  Apparently sometime during the holidays Tate became sick again & was told the cancer had returned.  After time in the hospital Tate & his family were told there was nothing more the doctors could do for him.  The cancer was too far gone & he was sent home with hospice care. 
Last night that sweet little boy closed his eyes for the last time & left this earth & his family behind so that he could go home to heaven for the long needed rest his little body needed.  Where he was welcomed I am sure with open arms by the Saviour & a loving Heavenly Father.  Today I am sure he was tasked with the job of guardian angel to an A-T kid like him.   
I read the posts of comfort on his mother’s FB page…dozens upon dozens of them. 
So sorry for your loss …
Sending prayers …
Sending love … 
The messages went on & on all sharing the same theme.  I don’t know if Stephanie has logged onto FB or if she is even cognizant of the outpouring of love she can find there.  I don’t know, were it me, I am not sure I could face all those comforting messages.  Would they comfort me or would they simply dig the knife deeper into my heart?
My heart breaks for his mother.  My heart aches for his father.  My heart weeps for his siblings.  My heart grieves for his family & friends.  How they must miss his face, his smile, his voice.  Even knowing what I know in my heart I am not prepared for the fate that Tate’s beautiful family is enduring right this minute.  What a horrible time of year to lose your child, your brother, your grandson, your nephew, your friend?  But honestly what time of the year wouldn’t be horrible? 
I sat there, at my laptop, on the couch feet away from Liam while reading the messages.  Tears sprang to my eyes, my heart dropped to my stomach. As I worked so hard to not cry in front of my child.  All I could think was; “I don’t think I can do this!  I don’t think I can do this!  I don’t think I can …. NO I know I can’t do this!” 
So I left the room cried my tears in private, talked to my sister in law Shannon, who helped keep me grounded & focused.  Who gave me the leave to ‘lose it’ if I needed to.  Have you ever noticed that when someone does that, that suddenly the need seems to disappear?  As though you just needed someone to tell you it would be ok if you wanted to lose it, then you find that is really all you needed to remind you that you don’t need to lose it? 
Tomorrow we leave for Disney World, for Liam’s Make A Wish trip.  By Thursday afternoon I will have found A-T family members & I intend to grab a hold of each one I meet & give them the hug to end all hugs.  I need to hold on to someone who knows what’s in my heart.  Not someone who is just imagining what its like to be me or sympathizes with me but someone who empathizes with me.  Someone who has & is walking in my shoes. 
Then I came here. 
Here to my blog.
Here to vent.
Here to put my tears into words. 
Here to leave my ache & pain.  I leave it.  Do with it what you will.  Whether to walk away from it because it is too much to read or to cry tears of sympathy for me or to feel I am being melodramatic.  I don’t care.  Once I leave this post behind I refuse to carry the feelings any longer.  I may have weak moments when I give in to my heart ache for the “S” family but I refuse to let it break me.  My child is still alive.
As I sit here & look across the rooms & halls tonight I see him, sitting on the floor in front of the couch, hiding behind one of our big couch pillows & softly annoying Hershey, his dog, by softly petting the little hairs around Hershey’s fuzzy ears & then smiling & giggling when Hershey shivers & shakes his head in reflex to his ear hair being tickled.
Oh Liam how I love you!!!  How I cherish you & the time we do have on this earth together!!  To all my children I realize how precious you each are to this family.  I recognize that we, none of us, really know when our time to leave will come.  I pray that it won’t be for a long, long time.  In fact I pray that a cure is found this year that we may shine a light & banish the shadow that haunts our lives daily.  I pray this for myself, for my family, for my A-T family. 
Hold your children close to your heart tonight.  Kiss their heads, squeeze them tight, even if they look at you like you are nuts, tell them how much you love them, how special they each are to you & never take for granted the gifts that the Lord has chosen to bestow upon your household. 

Please go to the A-T Children’s Project & donate today!  Help us fund a cure for Liam.  Help make a difference now by donating.  Share the link on your blog, if you haven’t already.  Tell people about A-T.  Tell people about Liam & Tate & all the other children fighting this monster by themselves.  We can’t do this alone, we need your help.  Liam needs your help.  On Friday Captain Awesome will join thousands of participants in the family 5k as the inaugural run of the Disney World Marathon weekend.  Click on the link to the Team Liam page & see how much he raised this year & then join in & donate to Captain Awesome’s run, this weekend!



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