Disheartened

Sometimes it's so hard to pin down how I am feeling and put it into words.  The last two days I have found myself feeling down, worried and anxious - much more than usual.  I think it was triggered by the scheduling of Jacob's RSV shot for December and all the warnings that came with the call, several appointment changes, a scare with baby Sara at SickKids and reading an article that was written about a single ventricle heart kid we knew who has now passed away.  It's compounded and intensified by the frustration that I sometimes feel when trying to get Jake to eat or drink orally.  Jake likes food, but he likes it in very small amounts - amounts that the dietician says are insufficient for his needs.  Trying to get Jake to eat 1-2 ounces of solid food can take almost an hour of coaxing, distraction and begging - it's hard and tiring when there is no improvement or if he refuses to eat at all it's very disheartening.  

The other side of the battle is that I am so lucky to have Jake, and for him to be doing as well as he is is a gift in itself.  American thanksgiving has gotten me thinking about my blessings once again.  I found an excerpt from a blog (http://www.aholyexperience.com) that talks about thankfulness with this quote as the context:

If anyone would tell you the shortest, surest way to all happiness—

he must tell you to make it a rule to yourself to thank and praise God for everything that happens to you.

For it is certain that whatever seeming calamity happens to you, if you thank and praise God for it, you turn it into a blessing.

Could you therefore work miracles, you could not do more for yourself than by this thankful spirit, for it heals with a word speaking, and turns all that it touches into happiness.

… it be the noblest sacrifice that the greatest Saint can offer unto God.”

~ William Law, A Serious Call to a Devout & Holy Life

This is from an old text, written in 1728, but it spoke to me when I stumbled upon it yesterday.  I have highlighted the parts that really stood out in my interpretation.  I am called to give thanks to God regardless of my circumstances - and in the last two days I have done anything but give thanks.  I have been grumbling and complaining and asking why - being a big whineing baby in my prayers.  But I know in my heart that when I thank God for my life and every aspect of it, what was a burden becomes a real blessing.  Jake's illness is a burden that I cannot carry along on my own shoulders - but when I take it to God and thank him for giving Jake to me and for the strength to care for him each day - I find happiness.  True happiness - not the kind of happiness that comes from taking part in Black Friday consumerism madness - but the kind of happiness that has it's roots deep in the heart.  Sacrifice is a concept that I have often struggled with - I am a person who loves comfort of all kinds, and the very idea of sacrificing something that I have or hold dear makes me want to run for the hills.  Jake has taught me in his almost 8 months of life that I need to sacrifice the "ideal life" and "ultimate plan" that I have been forming in my mind since I was old enough to think about having my own family.  My plan of having 2-3 healthy kids and a relatively easy life has been stolen from me by reality.  But I would never change it  now that I have a new reality - Jake and Georgia and Jon are my reality.  And I won't lie, some days are really hard and filled with self doubt and outright fear of what the future may hold.  But I've sacrificed my plans and accepted what God wants for me instead.  

This time last year we recieved Jake's initial diagnosis - HLHS (which turned out to actually be DILV and HRHS) - and I went through some of the most depressing and sad days of my life.  I questioned everything - and found very few answers.  Fast forward to a year later and here I am sitting in my kitchen typing this blog while Jake sleeps in his Father's arms and Georgia snores in her bedroom.  I no longer take anything for granted...I am thankful for everything.  I have days when I lose my perspective, but when I find it again I know without a doubt that I am blessed and that God is good through it all.  Tonight I find myself seeking that perspective once again.  Maybe a good night's sleep will help to restore it.  Christmas is right around the corner - Jake's 1st Christmas! - and I want to enjoy it to the fullest and experience all the joy that the season has to offer for me and my family.  So here's to finding that perspective, and to being thankful and happy once again.