Friday, June 19, 2009

lucky: having or marked by good luck; fortunate



"Some luck lies in not getting
what you thought you wanted
but getting what you have,
which once you have got it
you may be smart enough to see
it is what you would have wanted
had you known....
~ Garrison Keillor

I do consider myself lucky.I consider my life extremely blessed and lucky.I look upon the twists and turns of the last 2 years as times of unspeakable pain and equally, as times of immeasurable joys.I wake up each and everyday and know full well, that the mere fact I am waking up each and everyday, is indeed lucky.I do not have to look very far to receive these sometimes subtle nudges because quite honestly,most of the time, these reminders often come so forcibly, that the wind is almost literally knocked out of me.Tonight it came in the form of an update from Lacey,mom to our special little boyfriend Jax.This little guy fights tooth and nail for every breathe.Every day.From there I can send you to Pablo who is in a fight for his life at the tender age of almost six ... is birthday is on Sunday.Pop on over to darling Arabella and see her sweet face and I defy you to hug your 7 month old a bit tighter and not call yourself lucky.Then there is Ashlyn,a little love who happens to have Down syndrome,fought leukemia once and now is traveling that road again .... with a DIFFERENT type of leukemia.Little Gavin is a tiny but mighty fighter who battles daily against his very own body and his family puts one foot in front of another,looks to God for guidance and walks on.Click on Gwendolyn,spend time on her site,call up her archives and read about SMA and then sign the petition.Google Infantile Spasms and then visit Reagan and think about the upwards of 1000 and I didn't accidentally add zeros,that would be upwards of 1000 seizures that riddle her 2 year old body everyday.Stop by and perhaps offer your prayers to a young girl.A brand new mom.Jeana left me the most beautiful comment a few months back,referencing our quote at the top of Zoey's site and told me on that day "I was her solid thing to stand on".Send her hope for her 1 lb 11 oz little Kaely who happens to also have Down syndrome and AV Canal complete.I could go on and on.My blogroll is filled with families and children wading through one crisis or another.Some of these children appear from the outside, to be flying through life and it's milestones,but a certain few harbor within them,medical issues and impending obstacles,waiting for an opportune time to show their faces.Others fight everyday,every moment,just to be here with families who would move mountains to keep them here with them.I'll stop now.You probably get my drift.I am not intending to minimize the trials and troubles in anyones life.I am not asking for anyone to subscribe to my way of feeling or thinking.I am asking that we all pause for one moment today,look left or right and please for this one day,consider yourselves blessed and lucky.

*We are back on the quest for some type of oral feeding with Miss Z.Much to her dismay.Zoey use to be a champion eater.I know I will be repeated myself on this one but this child was g-tube fed for the first 6 months of her life,20 hours a day and THEN began nursing after heart surgery.Unheard of really.Especially with a child with a serious gag reflex and a tongue that rivals no other.By 9 months of age she powered down 2 jars of baby food and by the time we hit seizures at 11 months,it all went down the toilet.Actually she nursed until last August but food ... no go.Topamaz suppresses the appetite,big time.Dulls the senses,big time.Then Chemo and I doubt that needs explanation.So we are back to ground zero.We begin with what they call "crumbing" and go from there.Zoey was none to happy yesterday when we began but by today,she is at least keeping the crumbs in her mouth.I am doing it about 5 times a day and with work and dedication,she will hopefully reacquire a bit of a desire for solid food.Slow and steady we go once again.

13 comments:

Anonymous said...

She will conquer this little bump in the road like all the rest of the mountins she has conquered. Zoey looks very grown up sitting there in her highchair. And happy... love that smile and twinkle in her eyes!

And oh yes, we all are so blessed and lucky especially when we read about Zoey's "classmates" of CHLA

Take care

Bluebelle

Reagan Leigh said...

Great post. Even in our worst of circumstances I am still able to look at others circumstances and think...wow, we are lucky. Maybe it's our faith that allows us to do that. I think it's important for us to grow from our circumstances, not just dwell in the negative. Always stay positive. Things WILL get better! Zoey looks great! Keep it up with the food! Five times a day, I respect your determination. I can't even get around to that with Reagan! Great to talk to you! So glad you are home again and living life!

Michelle said...

That photo and smile of Zoey is a blessing in itself...what a beauty...she reminds us of all that is beautiful and good! And you, my friend, remind me daily how grateful I am for the things in my life, especially my new found family! Gratitude is so powerful, so uplifting...it increases our faith, courage and strength even in the most desperate of moments...realizing all the blessings we have is a blessing in itself. As we both know there are so many out there that never stop to be grateful for all they have, all that God has blessed us with. Love to you my friend...always!

Lacey said...

Oh I would love to see her eat some great stuff with those little fingers. I remember pumping while Jax was in the hospital, so I could nurse him. But after 3 months on the vent, they had to switch him to fat free formula. So I decided to give up the pumping, knowing that even if he got off the fat free formula, he had been intubated so long that there was no way he would eat by mouth. The things we go through with these stinkers. We love you guys, we are definitly family.
Oh by the way, does that girl ever stop smiling?

Junior said...

loved the post,
Even during the worst of times I feel so blessed to have my little dude with me.
We will be praying that Zoey will be a champion eater in no time.

Alyson said...

Even after all she has been through and the tough road that is still ahead of her she seems to be so happy as she is always smiling....

Even in times of darkness she still shines the brightest :0)

p.s. I gave you a blog award please visit my page to see it :0)

Anonymous said...

I am just a lurker, but am in love with little Zoey!!I have a 13 year old daughter who happens to have an extra chromosome also!! Her name is Grace. I was also excited to see that your daughter is going to Pepperdine, as my oldest is going this fall also! We live in Texas so it will be quite a change for her! Please know that I will be continuing to lift Zoey up in my prayers. my email is kelly.kile@sbcglobal.net if you want to get in touch. (I facebook, but don't blog) Take care, Kelly

Devon said...

I know about the uphill battle with the feeding...sigh...

I too feel very lucky. This is a wonderful post.

Anonymous said...

Happy Father's Day Mark... Hope you had a very special day. just as special as you....


Aunt Bluebelle

Kele said...

Lucky and blessed indeed, and beautiful thoughts for those others that need prayers.
Good luck with the feeding, Presley does so well on most days, then she has her "equal equation" moments... 'what goes in the mouth will come right back out, in the exact amount', followed by a big smile...that precious little stinker of mine!
Kiss that precious little stinker of yours for me! And tell that cutie of husband, Happy Father's Day!!

Carey said...

I have no doubt she'll get there! Go Zoey Go!!!

Kristy said...

Mmm..yes Lucky is such a word that some people don't use and some take for granted. I feel lucky and blessed everyday to hug and love on my children and to be able to pray and follow along with many other people and their children. Life is good!!! And Zoey..amazing!!

solomi558 said...

Oh, my goodness . when I go to bed tonight I will not be reading, I,ll be thinking and praying for all you brave,brave people . god bless all these children------------------cottonreel