Blessings in the tough stuff

My goodness, things are crazy.  I don't know if its a combo of having a newborn, not being at school until November, or what, but I feel busy!!  Got a haircut today, and it feels so great!  I have had some great days, and some dark days.  Well, dark nights...I think the devil knows when to get at me, when I am home alone with Micah and Roger isn't home, or in the middle of the night, I am plagued with guilt and doubt in this PKU adventure.  I always wonder if Micah will hate us someday for doing this to him.  I know we didn't do this "to him" but it sure feels like it.  My gene + Roger's gene = PKU.  So, without both of us, he wouldn't have this.  Not to mention, we had to do a blood draw on his little heel Sunday night, and we had to stick him many, many times to get the blood on that dumb card.  I hate this.  I hate all of this.  I hate making my baby cry every week to take this dumb blood thing.  I hate that he has to be a boy and eat "girly" things for the rest of his life.  I hate PKU and that my child has this disorder.  I am fearful of the future that I can't do this, that Micah will not want to do this diet anymore, and just go off of it, then who knows what will happen.  I really hate how I can't feed my baby how I want to.  I have to call someone in Indy before I change anything.  I don't know why God allowed this to happen to my little man, but I know that in my weakness, He is strong.  2 Corinthians 12 often comes to mind when I think about this new situation we have in front of us.  It is when Paul is talking about the thorn in his side...he said it was put there to keep him from being conceited.  It says that Paul pleaded with God to take it away from him, and the following was his response to Paul.
(2 Cor. 12:9)-But he said to me "My grace is sufficient for you, for my power is made perfect in weakness" Therefore I will boast all the more gladly about my weakness, so that Christ's power may rest on me.  That verse is jam packed with good stuff that I need to know and claim that promise over my life, and my family's life and especially Micah's life.  I don't know how to boast in my weakness, or what that looks like, but I am going to try to figure it out.  I think even though I am angry with God, he has still sent along people to walk along side me.  For example, this week, I got together with a friend and one of her friends and her daughter that has PKU....she is beautiful, just like any other toddler I know. It blessed my heart to interact with her and her mom, and to ask her mom questions because she understands where I am at.  Then, when I got home from that event, I had an email in my inbox from someone in our church that has a friend that adopted a little one from China that has PKU.  I have emailed with this lady some, and already it has been a blessing.  I think to myself, she knew this child has PKU, and they still chose her.  Levels me, really, when I think about it.  I can't wait to meet them in person.  Oh Jesus, give me a heart that is okay with this.  Give me an attitude of understanding and acceptance.  On a lighter note, Micah got his newborn pics done this week, and they are so so good.  We are thankful for our little man and can't wait to watch him grow up big and strong, just like his daddy!  Thanks again for all of your prayers for us.  We love our family and friends, and really appreciate the love and support you all have shown us.

First post.

What a journey.  Today marks 1 month that we have had precious Micah with us.  I was just thinking about what I was doing today one month ago, and boy am I glad I am out of the hospital with my beautiful boy.  We had a time in the hospital...labor was not what I expected...is it ever?!  I was not prepared for the c section that followed my 12 hours of labor.  That was crazy, but so worth it, and I would do it all over again 100 times with 100 times more pain.  Praise the Lord for an epidural though :)  Micah had some blood sugar issues in the hospital, and once those were worked out, they told us he had jaundice :(  again, so not what we expected.  So, after a night and part of the next day on the billy blanket, he was all good to go.  So, we thought.  A few days later, our amazing pediatrician asked us to go to the hosp. again because he was still looking a little yellow.  Wouldn't you know, he slept right through that heel prick.  I think he was used to the pricks in his foot.  He has had many in his short little life.  Once those levels came back okay, we were so relieved.  We were in the clear and good to go.  The next day (Micah was 9 days old) we got a call from our pediatrician's office that they had some lab results they wanted to talk to us about.  I forgot to mention that they called at 4:26.  Their phones shut off at 4:30.  I of course call at 4:30 and the phones are off...well, I certainly wasn't going to wait until the next day to find out what was up....had the hosp track down our dr, and they called me back.  Meanwhile, Roger just left to go get a haircut and pick up some groceries.  My mother in law and brother in law were here when they called me back.  They started to tell me about Micah's levels on his newborn screening test, and that 2 of them were elevated.  Big deal, right?  Well, as it turns out, it is a big deal, and they began to tell us that he has a genetic metabolic disorder called "PKU"  to this day, I can't even pronounce the actual name that those letters stand for.  Oh well, more things to worry about than that.  Immediately my mother in law called Roger and told him to get home quick. They were telling me all of these things and the things I heard was "his body isn't functioning properly" "it can be toxic to his brain" "mental retardation if left untreated" "can develop normal if placed on diet" "no meat for the rest of his life" "you will probably have to stop nursing" "no proteins ever"  "special formula" "very expensive formula he will need for the rest of his life"  all of this happened before Roger got home.  He gets home and I am still on the phone.  This time, I was directed to talk to a woman at Riley's children's hospital in Indy.  Riley's, really?  This must be serious.  They told us we needed to bring Micah to Indy asap and they wanted to recheck his levels to see if they has an accurate read the first time. We were convinced that God had already healed him.  We just knew in our hearts that this isn't what God wanted for Micah, or our family.  So, we came home that night to some great friends and family that gathered in our living room to pray.  We poured out our hearts to God, pleading with him that this wasn't true, and that he would do a miracle and amaze all of the dr's that told us this wasn't reversible.  We had to wait 2 days to get his levels back.  He went from a 6.7 to 24.  Normal range is 2-6.  Super high levels are in the 50's.  So, Micah's 24 was cause for concern.  I had to stop nursing, and immediately start him on that special formula that Roger and I left in the car.  We were convinced we were going to take it back to Indy because Micah was healed.  Needless to say, the next week or so was a mess.  Many, many tears and questions- why us?  Only 1 in 10,000 babies get this.  Neither Roger or I have ever heard of this before, and it does not run in our family, everyone was in shock and filled with questions.  Basically, both Roger and I have to be "carriers" of this.  We obviously are unaffected.  Micah, however got 1 gene from Roger that was active, and 1 gene from me that is active.  Our future children have a 1 in 4 chance of getting PKU, just like Micah had the same chance.  How could this perfect baby boy have this?  I admit, I was angry at God.  Still kind of am. I would wake up in the middle of the night, just balling thinking of Micah.I think of his life ahead of him, and my heart is so heavy.  How will kids treat him when he gets older?  What will he do when his buddies go out after a football game?  What will he have to enjoy?  How will birthday parties work?  Can we provide him with a seemingly "normal" childhood.  Do I have the energy and know how to cook all of these crazy recipes? If you know me, I don't cook from scratch unless its cookies.  So, this is very life changing for me also.  I still have lots of questions, and daily Roger and I are learning more and more about this.  I can say that it is getting easier. Because this is so rare, people really don't know what to say to us.  It's awesome to know that people are praying for us all over. Thank you from the bottom of our hearts for praying for our family.  We know that we need to rely on Christ, and its hard to do that right now.  One thing, my amazing husband is a prayer warrior.  Praying for me and Micah, it is a blessing to have him to walk through this with.  Please continue to pray for us, we have a lot ahead of us.  Pray for Micah that his body would be healed....he is a Beiler and Beiler boys like their meat.  Bottom line, this is treatable.  In the grand scheme of things, it could be a lot worse.  God has entrusted us with this little one, and by His grace, we will do whatever we can to provide for him and love on him and take care of him the best we can.  We can do a special diet, we just praise the Lord for his life, and the blessing that he has been to us already.  Thank you Jesus for my boys.  I love them so much.