Happy Birthday, Brent!

I spent yesterday thinking about today...Brent's birthday.  I was doing the same thing a year ago.  We had a scheduled inducement.  I prayed a lot...God please don't let Brent have PKU...5 minutes later...God please let Brent have PKU.  I wasn't sure what the best outcome was for us.  We had a 25% chance of him having it too.  On one hand, we had been through so much with Allie that we didn't know if we could emotionally handle Brent having it too.  On the other hand, we had become pros at the whole thing and it might be easier to manage them the same.  I also prayed obviously for a safe delivery and speedy recovery for me.
Brent's name is a pretty special one.  He is named after my cousin, Brent.  He passed away in a car accident a few years ago and I wanted to honor his memory in some way.  Brent was an amazing cousin, amazing athlete, amazing person, and amazing son.  I had no doubt that my Brent would have loved to know my cousin, Brent.  We have gotten lots of things that were once my cousin's including a few moose stuffed animals and a moose rug.  Fast forward to Brent's birth...
Brent's birth was a pretty traumatic one for me and traumatic for Jon to watch.  There were a few issues, the main one being he ended up being 9 pounds 4 ounces.  Within seconds of being born...my doctor said the words..."whoa, what a moose!"  And the nickname was born.  I knew at that moment that my cousin was looking down and giving his approval of his name being passed on.  Brent was given more tests than normal since there was a higher possibility to having PKU.  His tests ended up coming back positive and we now manage Brent right alongside Allie.
This past year has been an adjustment for us all.  Jon and I wake up everyday putting our energy into taking care of ourselves so we can better take care of our kids.  PKU is a silent war that we are fighting and we are arming ourselves everyday with more knowledge and more acceptance that this is our life God has given to us and all the challenges in it.

Faith

"Let us run with endurance this race set before us..."  This is one of my favorite verses because its easy to translate into everyday life.  It takes endurance to survive parenthood.  It takes faith to survive parenthood.  Everyday there is something that challenges our faith and pushes us beyond the limit we thought existed.  Jon has been working a lot lately leaving me to have some quality time with the kids.  Allie is well into those glorious, terrible twos and is embracing them.  No is the answer for everything...anytime she does something wrong, it's "Bent's" fault..."Bampa" is the only one she will talk to on FaceTime..the best place to take a nap is in "Bent's" crib with him so I can jump up and down and scream while he tries to sleep.  I'm amazed at how creative a 2 year old can be and wonder if I can bottle that creative up and save it for when she is older and has a big girl job.  

Each leg of this endurance-laden "race" we run, begins for me at 530 am.  My "warm up" is drinking coffee, making the kids first sippy cups of medical formula, and watching 20-30 minutes of "I Love Lucy".  I blink my eyes and its 830am and time to get to work.  I told someone the other day how productive I felt before 8 am.  I'm convinced that God made coffee to keep moms sane....or was that wine?  Maybe an AM version and a PM version?  

When I fall asleep at night, it is faith I end up turning to.  I've made it through another day...my mind goes through its daily checklist.  Brent is finally getting teeth so he isn't eating well.  He hasn't hit his "phe" number in days.  Allie, again, felt it was more important for Pepper to eat her Cheerios and goldfish instead of her...which apparently evens things out because she has been sneaking into the pantry and eating handfuls of dog food.  I now know the "phe" value of dog food...not sure if I should be proud of that fact or embarrassed.  I end up ending my prayers by thanking God for the faith he has in me and let Him know that I'm ready for anything else he throws at me...as long as I have coffee and wine...

The best thing

Everyone it seems is looking for the next best thing, including me.  As a mom, I think it is natural to want the best for your kids.  If you aren't careful, don't we let it consume us?  Isn't the "best thing" right in front of us?  Our family...is it not our best thing?  How could there be anything better?  How could there be anything better than hugs from your children who have applesauce all over their hands?  How could there be anything better than being barefoot stepping on Cheerios?

One thing I struggle with is balance.  I am always trying to figure out how to spend more time with them.  5-6 times a week I plop the kids in the "double Bob" stroller and go for a run.  I have a mantra I have started repeating over and over again throughout my runs..."I do enough, I have enough, I am strong enough."  And even after spending an hour focused on this, I still doubt myself.  Isn't that the nature of being a mom? A parent?  A wife?  PKU has definitely challenged me to make sure I'm always on top of things with the kids.  Did Allie eat all her food or did she feed it to the dogs again?  Did they both finish their "batches" today?  Did I weigh everything right? One thing I do know the answer to...is it worth it? Yes, of course it is...I have a " best thing".

Bloodwork day

Today is bloodwork day for both kids.  Usually only one of us is able to go and manage both kids.  Today is Jon's turn.  We will head to Nemours and meet with Dr. Wheeler, their geneticist, and Sandy, their dietician.  The other important person in the room is Miss Laura.  Allie LOVES Miss Laura.  She is the one who draws the blood each time and has become a friend of ours.  Every time At the end of drawing the blood, Allie has to have Miss Laura pick her up and give her a big hug.  It always helps her feel better.  Both kids do so well getting stuck with the needle.  Allie says "no, no, no" and then squeezes tight on me but doesn't cry anymore.  Brent screams for a few seconds, then gets his thumb in his mouth with his blanket and calms himself while I squeeze him tight.  They are so used to going to the doctor that do not fear anything.  We have to turn in our food logs each appt. to Sandy and evaluate how they are.  Most medicines, including antibiotics have "phe" in them so we have to communicate constantly with Sandy and adjust their diets accordingly.  We always have the same questions asked to us, "any skin rashes, seizures, tremors? What new things have they done?"  If their "phe" levels get too high in their brains, seizures can happen among numerous other things.  Also their brain development is tied directly to our ability to manage their diet.  Good thing I have a type A personality! Bloodwork day will end with long naps taken by both kids...they get so worn out from the 2 and a half hour appt.  Today maybe we will take them to Twistee Treat??  Anything to help them feel like "normal" kids...

What this blog is and is not...

I'm sitting in bed with Allie tonight and we are dancing to the "wiggle" song on Yo Gabba Gabba.  We are flailing our hands and heads and bodies and in that moment everything is perfect.  The song finishes and she knows it is now "nap time" as it is called on the show.  We head for bed and it is now time for me to make the kids' batches for the following day.  The gram scale and the blender have permanent places on the counter.  I measure out each of the kids' mixtures of medical formula and blend their batches.  The night is now finished and its time for bed.

This synopsis is a normal night for our family...a family in which both of our kids have PKU.  It's a very rare genetic disorder that doesn't have "awareness walks" or telethons raising money for it...and you are hard-pressed to find someone who knows what is is.  But is is our LIFE.  Our life is monthly blood work at Nemours Children's Clinic.  Our life is measuring every morsel of food on a gram scale.  Our life is reading food labels and being mathematicians.  Our life is our kids.

Why is this blog called what it is called?  Because we have to have the first two to mange the third.  Patience is tested daily...having a 2 year and a 10 month old creates daily chaos.  It's so important for them to eat their pre-measured food and drink their medical formula.  But hey, did I mention that we have two black labs?  The kids love making sure they get enough to eat too!  "No, Allie, don't throw your Cheerios to Pepper! You need to eat them!"  Love is given all around.  It keeps us going.  Love brought both of them into the world.  Love kept Me grounded when I blamed myself for the kids having PKU.  Love keeps Jon and I focused on remembering its family first.  Our life is our kids.