Thursday, September 16, 2010

Pictures & a Prayer

We had some fun in our Baylor gear before the Bears went 2-0 last weekend against Buffalo!  I wish I could hold out similar hope for this weekend, but we're playing TCU at TCU...yeah, not so much.  It was good while it lasted!  Love Audrey's bow?  Visit my friend Stephanie's store at http://www.patiecakes.com/ or http://www.etsy.com/shop/patiecakes.  She makes the cutest stuff and almost all of A's bows.  The sports bows are great, and she does them for college & pro too!  And Keegan's shirt is actually Gray's from when he was a boy at Baylor camp in the summer.  The back says "Gray 2002"...I think it's actually an old Baylor Line jersey from the 80s. 





Just in case you thought they always love each other!  ;)

I hate to end this post on a downer of a note, but it's something I need to get off my chest.  And frankly, when the day comes, I hope Keegan can read this and understand how I've always felt.  Two things happened in the last few days.  First, Carter's family (multivisceral transplant) unfortunately had to attend a funeral today for a lovely young lady and friend who was a short gut survivor and suffered severe complications after finally receiving an intestinal transplant.  Reading her family's online journal was heartwrenching, as they witnessed their beautiful daughter slowly lose her twenty year battle both physically and mentally.  Second, I was talking to an administrator at Keegan's school this morning about another child who had some medical issues.  I mentioned how comforting it can be to realize that children like Keegan who have life-altering illnesses in childhood will never grieve the loss of what they "used to have", as opposed to adults or teenagers who have previously lived healthy lives.  To our children, this is the life they will have always known. 

That is comforting and yet heart-breaking at the same time.  These two occurences highlight the blessings and curses of having children with special or medical needs.  It's often said in the world of solid-organ transplant (i.e. heart, intestines, liver, etc, rather than bone marrow) that the transplant is not a cure but rather substituting one disease for another.  We are told time and time again to emphasize the quality of life that our children have been given, not the quantity - because no one can tell us how long that will be.  The only thing we can be certain of is that it won't be nearly as long as we want it to be, whether it's two or ten or twenty. 

I've said it before but my greatest fear is not the day I have to say good-bye.  That is unfortunately something that I have time to come to grips with...although I know it won't make it any easier.  My fear is the possibility that he will quit fighting.  The day he might say enough is enough; I don't want to do this anymore.  There will come a day when he realizes that he's not the same as his friends.  There will come a day when someone teases him for the scars that riddle his body rather than see the courage and miracles that they represent.  There will come a day when he doesn't get excited pulling into the hospital parking lot or being loaded into an ambulance.  And there will come a day when he looks up at me from a procedure or surgery or inpatient stay and say, "I'm scared."  I just pray that he won't say that he's done.

And I won't blame him for feeling that way.  I won't blame him for not wanting to keep up the battle.  I won't blame him because he has fought since the very second he came into this world.  And it's hard.  It's so very, very hard.  And it's not fair...at all.  So, I pray every single night for his strength and courage.  I pray every single night that he doesn't get tired.  I pray that I am always able to reassure him of the love that God has for him, that saved him, that gave him life.  And I pray that Gray and I have the strength to keep fighting when he can't. 

I take great comfort and joy in the fact that anyone who didn't know Keegan's story could look at him today and not know that anything is wrong.  I pray for many, many years of that.  I know many will read this and think why we would be so negative.  But this is just our reality.  It's what we live with day in and day out.  It doesn't make us pessimisstic or depressed but rather more and more grateful for what we do have.  We have two beautiful children who are so much more of a blessing than we deserve.  This is their life...and I pray for it to be that way for a long, long time.

2 comments:

Jennifer said...

That was absolutely beautiful, and not negative at all. I am amazed by the strength of everyone in your family, and it makes me try to be a stronger person myself. But honestly, I don't think you have anything to worry about - your fiery one is a fighter and when he doesn't have the strength to fight every now and then, God blessed him with parents who are more than willing to do it for him. God bless and prayers to you all!

Stacie said...

Hey Maddie! It's Stacie (Gavin and Garrett's mom from OCH). I had been wondering how you all were doing since I hadn't seen you at OCH in a bit. I saw the article on the Children's site with a link to your blog. Didn't know you had one. Awesome! :) I have enjoyed reading back a bit on the favorites tab. Looking forward to keeping better tabs on how you all are doing. I keep a blog as well. You can find it at www.smithscooptexas.blogspot.com.


Much love,
Stacie Smith