Sunday, August 29, 2010

A Leap of Faith

I'm tired lately.  Well of course, you say?  I have two kids under the age of of whom is Keegan, who makes up for a whole houseful in and of himself.  If Audrey's not up in the middle of the night, Keegan is.  He has stopped napping almost completely, and the days he does nap, it's (1) short, (2) Audrey will surely not be asleep at the same time, and (3) will cause him to be up until 9pm at a minimum.  Almost every night or morning for the last two weeks, Keegan has had some kind of tube or diaper leak that requires washing him and his pjs and sheets.  Frankly, it started wearing on me.  I hate that I can't just put my child to sleep at night without worrying how many times I'm going to be up to untangle him, change him/sheets, silence pump alarms, etc.  When you're exhausted, you don't always think rationally, and things wear on you much quicker than they should.  I started to get overwhelmed by Keegan's therapy and doctor appointments, his inability to communicate, his feeding problems, and his labs starting to take a turn for the worse.  I started to worry about the upcoming cold and flu season and how to handle "lockdown" with a second child.  One who was starting to get a little frustrated with being awakened earlier than she wanted to in the morning to go to Keegan's appointments.  Being up all night just gives you a lot of time to worry about life - the way it is and the way it should be.

These are all things you think I would be used to by now.  They are the things that, up until now, I have accepted as the way it is.  In our little bubble of a world, these things are our normal, and I'm usually ok with it.  But then, the way things should be slaps you in the face...hard.

Because Keegan is starting school this week.  Yep, at the urging of the transplant team, he'll start Mother's Day Out at a nearby church two days a week on Tuesday.  I hate to admit it, but I'm absolutely, positively terrified about it.

I know beyond a shadow of a doubt that he will have the time of his little life there.  I know he'll be excited to be in class with his friends, Lainey, Gage, & Ainsley.  I know he'll grow up before my eyes, and I hope that his speech and eating will take off because of it.  I know these are the reasons we were told to enroll him.  I'm certainly grateful for a transplant team that stays positive and has realistic goals for him.  I can't wait to see all the artwork he'll bring home, to read the daily reports of the fun things he did, to see him shine to his full potential.  We are blessed to have a school with teachers and administrators willing to take on the responsibility and risk of caring for Keegan and other parents in his class that already care so much about him. 

But I'm paralyzed by the fear that he'll end up inpatient way too much when we are so close to a year of being at home.  I'm afraid that the teachers will get frustrated that his communication skills are so far behind his peers, that he's the only one in his class that hasn't even thought about potty training (you try talking potty with a kid pumped full of formula all night and who has GI problems, for lack of a more p.c. term).  I'm nervous about possibly having to ask every parent in his class to please choose flu shots instead of the nasal mist that contains live virus.  We have spent three years shielding him from others to keep him well, and here we are, sending him to the front lines of germ warfare with no armor whatsoever. 

It's not fair that we have to worry about these things.  It's not fair that the choice to send my son to school was not made because he wanted to or that he was old enough.  No, it was made as a "quality of life" issue.  I shouldn't have to think that this is something he needs to do because if he were gone tomorrow or next week or next year, we wouldn't want to have not given him the experience of learning and playing with other children his age.  It's not fair that he'll miss the first full day at school for his annual cardiac work-up...because we need to cut his neck open and snake a line down to his heart for a biopsy to make sure his body isn't rejecting his beautiful heart.  It's not fair that every day when I drop him off, I'll have to drive away wondering if it'll all come crashing down today.  This should be fun and exciting, but instead, all I can think about is that it's just not fair.

But then I remember all the parents I know who would love to be the ones walking their child into school on Tuesday, no matter how unfair it is.  The ones who don't get to hug and kiss their child anymore and send them off to have fun, even if all they do is sit and worry about them.  The ones who would give anything to spend another night awake tending to their child.  And my worry seems petty.  I might not get to walk Keegan into school for as many years as I would want, but this week, I get to.  It will take a huge leap of faith to walk away and put my trust in Him.  But I will...because He has done wonderful things for us, and we couldn't be more grateful.


Texas Transplant said...

Oh Maddie, your post made me cry today. You are unbelievably giving and strong. I'm thinking about you. Love, Lo

The Millers said...

Maddie, I am definitely thinking about you and Keegan today. I pray that he will do beautifully in school and remain healthy all year. And I pray that you won't have to worry. Good luck and know that we will be thinking of you guys.

Cindy said...

I know this was a hard decision for you and Gray. I am praying things will go well for all of you, for Keegan to stay healthy, for Keegan to have the time of his life, for mommy and daddy to get some rest. And for everyone's fears to be comforted. Love to you all, this IS a big step and so proud of ya'll. Cindy A.

Susy said...

I'm so happy to hear that Keegan will get to go play and learn with his friends! I've wondered if this would ever be possible for him...and I'll be praying for him and for you! I can't imagine how hard it must be to give him this, but be terrified by it at the same time! I'll keep praying, as always!