May 20, 2015

Summer Break

Back to the baby man...
December still mystifies me.  Everything happened so fast with his kidney going downhill.  But by the grace of God and I'm sure through prayer, we got Clayton's kidney under control.  The whole thing is still kind of crazy to me.  The doctors were all "transplant or major surgery in the next 6 months" until they weren't.  Now they are all "monitor and wait".  So we are.  Thankfully we are finally getting a break from co-pays and hospital fees for a couple months.  We get to monitor his blood pressure from home and do labs locally through the summer.  Then August begins the mad dash again.  We have to do all new tests on his kidney and all new cancer scans.  September will be Texas. October is Nemours Orlando (prep appointment for future kidney stuff there).  November is always a busy month. Last but not least, December will be a stent replacement.  And all of that is if nothing goes wrong.  No respiratory issues or decline in kidney function or reaction to sedation or dental work or unexpected procedure or hospital visit of some kind. That's the schedule barring any speed bumps.  And well our life wouldn't be our life if we didn't have speed bumps.  They just seem to happen.  So we are going to try really hard to enjoy the next couple months of quiet.
Trying to do all the fun stuff with Clayton we can!

And we can't forget the pup...

May 12, 2015

Something Old, Something New

In the midst of my feeling like crap the last month, I got an awesome gift.  It was meant to be a Christmas gift from my mother, but the lady working on it had some personal circumstances come up so we waited patiently for her to finish as she could.  And of course it came when I felt too cruddy to share.  So now I'm going to share...

Sorry the pictures aren't the best.  I was trying to snap them one handed with Clayton reaching for my phone.  Obviously, it's a quilt!  But not just any quilt.  It's made from Clayton's clothes!  I have known for a long time I wanted to do something like this, so I saved my favorite clothes of his (or the ones that hold the most memories).  The quilt has clothes from the first five years of his life.  I found a lady on etsy and gathered and mailed her the clothes and told her what pattern I liked.  She took it from there.
Quilts tell stories.  Quilting is an art form and one that is not as popular as it once was.  Since Clayton got cancer, I have become a huge fan of quilts.  We have kid sized quilts from quilt guilds across the country from all our hospital stays.  That has been such an awesome token of love that we have been given by a few friends, but mostly from strangers.  
So anyhow, now we have this amazing quilt that tells Clayton's story.  Nearly every picture on this blog is represented through the fabric on this quilt.  There is clothing given to Clayton from our parents and grandparents and a couple hand-me-downs from my sister's kids.  I am just in love with this.  It is Clayton's story with lives of our family, every home we've shared together, every hospital stay, every plane ride or road trip, every traumatic event, every happy place...seriously, it is all represented here and it is the coolest thing I own.  If there is a fire, this is what I'd grab.  
The one thing everyone might recognize are all his button up shirts from his halo traction.  All five or six are in here.  I could go on and on, but I'll stop myself.  It is awesome and something if folks get the chance to do is worth looking into.  I'll post a link later if anyone is interested, but it's from a lady on Etsy.  I believe her store is called QuiltsByVanessa.  She is out of Crawfordville, FL.

This quilt has definitely been my highlight lately.  I'll post an update on Clayton in the next few days :)

May 8, 2015


There is a season for everything...and eventually each season changes into the next.
No more baby.
I would say I lost the pregnancy, but to me that just sounds as though I should be able to find it.  So, what I will do is say that my pregnancy is over and I doubt I will ever again be pregnant.  AND I am at peace with that.  The details aren't important and certainly aren't anyone's business.  If I'm being completely honest, I would typically be more of an open book...But, all of our parents think the simple explanation above is enough and this particular time I am choosing to take their word for it that one day, I will appreciate having kept details to myself.  If not, maybe one day I will share the details, but not today.  I can also say, that I don't believe that they want to discuss it either, so please respect that privacy and accept this post as the only explanation.

All of that said, I'm ok.  This pregnancy never felt right.  Which is the opposite of my pregnancy with Clayton.  My pregnancy with Clayton never felt wrong and ALWAYS felt right.  That was a distinction I made early on this time.  But I put on my happy-everything-is-going-to-work-out face and tried to ignore my intuition.  I even got a cradle, started a list of things we would need and pretty much had names picked out.  All just trying to focus on the positives and the fun stuff.  I tried to push my doubts to the back of my head and was even taking some preggo safe anxiety meds for them.  I did ok for a while.  Then for the last few weeks I have been sick.  Around the clock sick.  It was like having the stomach bug nausea with minimal throwing up 24 hours a day with no end in sight.  It made it much harder to focus on the positives.  I felt like my life fell apart once I got sick.  It became impossible to ignore the fact that the pregnancy didn't feel right once that kicked in.  I was too sick for nearly everything.  And my health issues (me and the doctor think from chronic stress) that started after Clayton and I returned from Texas the other summer only got worse during the pregnancy.  Things like chronic pain throughout my torso, back and neck and numbness and tingling in my extremeties.  I was only in my first trimester, but because of my personal health issues, it felt like my third.  It was quite miserable.

And now, everything is over.  And I am OK.  I am OK to the point I almost feel guilty for feeling so OK.  This whole experience was God providing me with answers I have been looking for for years.  I know that 100% and that has a lot to do with why I am so OK.  Part of those answers were about what is right for Clayton.  And I know beyond a shadow of a doubt that right now a sibling is not right for Clayton.  Again, I tried to be optimistic in the beginning, but I know now.  I know that he still needs us too much.  I know that until we get through his kidney and his back the time is not right.  He needs all of us right now.  For the bad times and to provide him with fun times.  I hate that it took this (VERY) unexpected experience for me to find the answers I have been searching for, but I cannot clearly describe the overwhelming sense of peace having these answers provides me.  I am so OK because I know God provided me the answers I so desperately needed through this experience.  And knowing those answers, I know that the way things have worked out is what's best for Clayton.  So when I say I am at peace, I mean it.
My only regret is that we as humans are so ridiculously stupid or stubborn (not sure which) that we need to go through things like this to find the answers we seek.  Because despite my peace with the situation, I am all too aware that the beginnings of a life were started and then lost before it could begin.  I told George I would like to plant a tree.  Maybe one Clayton can one day play under and we can gaze at from our house to mark this season of our lives.
I am so thankful for my sweet buddy and that this weight (of unanswered questions) has now been lifted and that I can thoroughly enjoy my time with him without questions and what ifs.  He is my life.  He is everything good, everything right and everything beautiful in this world.  I am so grateful to be his mom and that is all I need.  Maybe one day in ten years or so we can adopt if that is what feels right.  But for now life is just about keeping Clayton happy and healthy.