it's a new day

and it's a new year.  we rang in the new year at the hospital.  we're still here.....been here since Christmas, and basically since July 28th.  That's okay.  Right now that's how I feel, though.  Ask me tomorrow. Then I might be ready to go home.

Well, I am ready to go home.

Sometimes, though, it's more convenient to stay here at the hospital.

Plus, while holding that baby, I've managed to watch the entire first season of Prison Break (good thing my husband got that as a Christmas gift...thanks MIL!).  Amazon.com is about to be getting some business as I order the final 3 seasons and the finale as well.  Next up after that I think I'll order all the seasons of LOST.  Since I've seen those anyway...but it will be good to watch them straight through.  Okay, enough of that.

What's up with Ridge-- okay, he's still bleeding.  I don't know why.  We are going to fiddle some with his medications soon, I think.  He does have a port, but a surgeon today said we had to wait 2 more weeks to access it.  I'm not sure I like that idea bc I know he'll need blood before then.  Like, as in, tomorrow.  Good thing he still has his EJ.  I am so ready to get out of this horrible part of the MLT.  Blood at least once a week.  Wondering if we need to change/increase/whatever his medications.  Wondering if some of the meds are even making a difference.  Hoping we are like MOST of the cases where the MLT really does get better in a year.  One thing I know, if the next five months go as quickly as the past five months, we will be out of this scary part in no time.  Hoping that is true.  Wondering how much we will enjoy the "real world" when we get out of here and GET to enjoy it.  Ready for the sunlight.  Ready for my baby to not have a permanent infusion of meds running into his little body.  Ready to put this all behind us.  It won't be OVER necessarily in five or six months, but it should be remarkably better, hopefully, if my kid follows many of the others with MLT.

SO....what do I think of 2009?  I'm glad it's over.  I'll hopefully be even more glad when 2010 is over bc hopefully we will be at a more normal stage in life where we will be living at our house more than at the hospital.  I think 2009 was a good year in that a lot of good things happened- we had our second baby, we had just moved into a house we love, we gained a nephew, found out we have another one (or a niece) on the way, I found some new hobbies, my students did awesome on their AP Calc exam, we joined a church we absolutely love, we celebrated another year of marriage....and then it only took about one gigantic bad thing to lose that focus-- multifocal lymphangioendotheliomatosis with thrombocytopenia.  I told you it was gigantic.  I remember being told on july 28th that the docs thought we'd be out of here within a few days.  Then...we lived here almost 5 months.  Ridge lived at home about 12 weeks, took vacation at the hospital, and went home for 3 days before coming back.  he's been around for close to 40 weeks, so his time at home is definitely majorly less than his time at the hospital.  I have spent a lot of time with my three boys this year because we've been cooped in this little hospital room....I have missed out on a lot with Sawyer I fear, but I don't really know that bc I am still seeing him most every day.  I have probably forgotten how to cook.  I have eaten more cafeteria food in five months than probably my entire life combined- and I'm a teacher.  I hope that Ridge is on the good end of things soon, bc I fear things like Sawyer's fourth birthday being celebrated in the hospital.  I don't fear Ridge's first birthday being in the hospital, because quite frankly, THAT won't be a shocker to me.  But I don't want Sawyer to have to live in the shadow of his brother forever.  It's so stupid bc I know he won't remember any of this and it doesn't really matter to him, yet.  And what's the point in worrying ALREADY?  I know, I know. I know.  But it doesn't change the fact I still worry.  So the bad might outweigh the good for 2009, at least on paper, but I am not oblivious to the overwhelming grace and provision God has given us this year, and that, if I could even think of all of it to write down, would incredibly overshadow the bad, of this I am sure.  We have had a community, family, churches, rally all behind  us and cover us in prayer and provision.  We have made a lot of new friends in our nurses and even our doctors.  We have become incredibly educated on the disease our son is facing and feel comfortable doing things i never thought I'd be able to do- changing his IV meds, giving him a gajillion oral medications, sticking his finger and checking his hgb levels.....knowing  by sight how well he is doing, even before checking his hgb or seeing a "scary" diaper.  I have much to be thankful for this year.  It is hard a lot of the time to let the good outweigh the bad.

I have been honest in my blogging this year- which is another hobby I picked up in 09.  I don't like it that most of my blogging is about Ridge- not bc I mind writing about him, bc I don't.  I know that's what most of you want to read, and it is an outlet for me, as well.  I just wish i were writing about all the hilariousness our life holds, bc I know, with crazy Sawyer, and Ridge, too, if we could just be a little more normal, I would have some insane writing material.  I want to be open in all I write-- our joys, our struggles, our whatevers.  I am grateful to have somewhat of an audience who reads this, and I appreciate your rallying behind us, following us via the blog, and praying for us.  Please continue to do so.

Although it has been a hard year, in which I have struggled immensely and failed often, our God is the God who has not changed.  His love and provision has not been altered based upon my lack of faith and absence of witness at times.  While my human and motherly nature wants my son to be free of this right now, and my family to be normal, like most of you reading this-- people who can take their kids to the zoo, the mall, the movies, the grocery store, whatever-- God didn't choose that for me.  And when we are out of this horribly dark time for us, a dark night of the soul, so to speak (Richard Foster, Celebration of Discipline, read it), we will be able to partake in those activities.  And we will love them all the more, and have a deeper appreciation for them, I think, since we have not been able to enjoy them as of yet.  And perhaps they won't really matter, bc we've learned to be a family w/o that stuff- not that any of it makes a family....My heart will go out in different respects because of this- at Christmastime, when we are out of this, I will wonder about who is having to live in the hospital at Christmas, who is fighting for their child's life at that moment.  I won't worry so much about the presents, I hope.  I hope that I will cherish these things, and ponder them in my heart, as my life goes on, that I will be better because of our hardship.  That I will reach out.  That I will provide for others as people have allowed God to provide for us through them.  That I will find people in need instead of providing for my family's wants.  That we, as a family, will be people of compassion who would rather teach our children how to love the people of the world around them and how to show Jesus to them instead of worrying about getting this, or not getting that.  I pray that we- Brandon, myself, Sawyer, and baby Ridge- would be crusaders of the gospel- a gospel of hope, faith, provision, grace, community, compassion, love, mercy, understanding....the gospel of new life.  I pray that Jesus would shine through us- yes, as we go through this tough time- but even moreso when we are OUT of this darkness, that we would be the brightest lights we have ever been- that we will have been changed forever by the hand of God over us during this-- that we may be the delivers of hope to families in need.  Just as many of you have been to us.  That is my heart's desire.  That my family will be beacons of hope to the world around...that we will see the needs of others well before our own desires.  That we will use the little resources we have to bring goodness and grace to others, not to ourselves.  That we would be living examples of how Jesus has taken care of us.  That we would be messengers of a bigger picture.  I hope that is, I pray that is, I need that to be true of us in our future.

God bless your 2010.