Monday, January 23, 2012

My journey in faith

I was raised Catholic.  Although I never went so far as having my confirmation (life was..well..insane at that time in my life-we won't go there) I grew up surrounded by all the rituals of the church.  We went to Sunday mass, sometimes at the very church where my dad was an altar boy.  Church to me entailed lots of kneeling, singing, and repetition of the familiar prayers. 
When I was in high school, I experienced a church that was to me very cult-like in nature.  I was looking for a place to worship and wanted something different than that ritualized Catholicism that I was so used to.  At first, this church was everything I wanted and more.  I went every week with my friends to church services, and we attended youth group regularly.  I felt a lot of support and love there for quite some time.  It was exactly what I needed, and I looked forward to attending church every week.  Until one day one of the main pastors at the church asked us if any of us had any friends that were of a non-Christian religion.  Not knowing what he was asking for I replied that yes, I had a friend who was a Muslim.  He was non-practicing but identified with the Islamic faith, as that is what he had grown up with.  When the pastor heard this, he asked me if I had ever tried to talk my friend into converting to Christianity.  I said no.  The pastor then informed me that if my friend did not convert to Christianity, the Lord would send him to Hell when he died.  And I would go with him, for being a "party to nonsense."  That was the last time I ever went to that church.
Though it shouldn't have, that experience totally turned me off to the whole religion experience.  I didn't want anything to do with any religious institution whatsoever.  I still prayed, and I still talked to God.  Quite a bit.  But I did not want to talk about the Bible.  Or church.  Or any of the scripture I had grown up knowing so well. 
Then my daughter got sick.
It was horrifying.  When I woke up every morning, I would race to her bedside, not knowing if today would be the last day I would see her.  I screamed at God.  I cried.  I questioned-loudly-why this was happening to me.  I was fumbling and lost.  It was very ugly. 
When Madi was hospitalized in 2009,  things got hairy rather quickly.  I found myself feeling so alone and so afraid.  I had spoken with a chaplain many times, but didn't feel very comforted.  Then we went to the Mayo Clinic.  The first night that we were there, a sister came to see Madi.  (They have a convent in Saint Mary's Hospital.)  She prayed with my husband and I, and even did a blessing on her and her blanket and a cross pin that we had bought for Madi.   There were wooden crosses on the walls, and the most gorgeous chapel I had ever seen in my life.  Honestly, the chapel at Saint Mary's will make you think that you were in an old Roman cathedral.  It's beautiful, and peaceful.  Right then, it was everything I needed. 
The night that Madi got her heart transplant, when her new heart failed and the nurses and doctors were rushing her back to the OR, I felt like my life was over.  I requested a chaplain.  A little old man made his way up to our little conference room on the 5th floor.  He sat with my husband and me for what seemed like days-into the wee hours of the morning-while somewhere on the ground floor of the hospital, doctors were cutting Madi open again, trying to save her life.  Oh how we prayed.  And cried.  That chaplain didn't even blink an eye when I told him how angry I was at God.  I assume that he has heard it all before.  I asked him if this was happening as a punishment to me for not going to church.  He gently took my hand and said that that was not the case.  I described my guilt in not praying at church, in having a relationship with God that only existed in my own mind.  He smiled and said "That's all God needs.  Do you think the Lord requires that you go to a specific physical location to pray?  No, He just asks that you try your best to live life like He would want you to.  He wants you to talk to Him.  And I am willing to bet that you probably have a better relationship with God while you are praying in your bathtub than a lot of people that only pray for an hour on Sundays while their fellow church members are watching."
Just like that, a huge weight disappeared.  That chaplain, with his gentle words, brought me back to where I needed to be.  Madi recovered from that scary episode, and when she was brought back to her room at around three in the morning, the chaplain and the nurses all joined hands with us and surrounded Madi's bed.  And we prayed together.  It was then that I knew that God was in the room.  That He had been with me all along, and He knew what He was doing. 
I still don't attend church, but now it's mainly because we were told not to for the sake of Madi's immunity.  In the words of one of our many caregivers, "Church is one place where unfortunately there are way too many germs."  Now, though, I don't carry the guilt.  God and I?  We are pretty tight these days.  And I don't have to go to some building weekly to know that.  I don't feel lost anymore.
Sometimes, all you need is a gentle hand to lead you to where you always knew you were going.

Wednesday, January 11, 2012

CHD Awareness Week 2012

Holy moly, is it already January?!?  Yikes, where did the time go?  Maybe it doesn't seem like January to me because we here in Minnesota have been experiencing more than a few unseasonably warm days.  We're talking fifty-ish degrees-that's practically shorts weather! 
And since it's almost mid-January, that means that ready or not, February is right around the corner.  Why is February so important?  Well, February 7th through the 14th is CHD (Congenital Heart Defect) Awareness Week.  As many of you know, both of my daughters have had to battle the beast that is Dilated Cardiomyopathy.  I have been launched full force into the heart world, and for awhile it was quite the struggle.  I felt so overwhelmed, it was like I was being suffocated and couldn't find any relief. 
All that has changed in the past year or so.  I have found a group of wonderful and supportive heart friends.  Not all of them are transplant parents.  Not all of them are even Cardiomyopathy parents.  Some of their children are no longer here on Earth.  What bonds us all is the fact that we all have kids with hearts that are sick in some way.  I don't know what I would do or where I would be without them.  I like to say that being a part of this support group is the silver lining in the cloud that is living with heart defects.  These men and women are the best group of friends I never wanted.  And I say that with the most love my heart can hold.
So here I am, TWO children in, and what have I become?  A no-holds-barred, not-easily-silenced, ruthless crusader for CHD awareness.  It's my goal to help the world become as aware of CHDs as they are of breast cancer.  I want the average Joe to be able to look at a blue and red awareness ribbon and say "Oh, yeah, that's for Congenital Heart Defects."  I want to motivate people to look into their own hearts and decide to make a difference for a CHDer by donating money to pediatric research.  I want people to be excited about giving blood.  I want every child who has to have heart surgery to know that they are not alone, that it's ok to be afraid, and that they have SO many people out there to love and support them.  I want every parent to have their babies get a pulse-ox test before they leave the hospital as a part of their newborn exam, and to have resources on hand and readily available to parents with a new diagnosis of a CHD. 
Are these lofty goals?  You bet.  But does that mean I am going to stand on the sidelines and wait for someone else to do it for me?  Not a chance.
I plan on shouting my message to the rooftops every single chance I get.  And why shouldn't I?  These ugly monsters called CHDs have taken far too many children already.  Children I care about.  Children I have held, loved, kissed, touched.  Children of parents that mean the world to me.  It almost took my Madi.  Several times.  Enough is enough!
So what's the plan?  Well, besides being a big mouth about it (which I may be a bit too good at... oops..) there are several things in the works.  Currently, a group of friends and I are trying to get our local TV stations, radio stations, and newspapers to feature stories about families that have dealt with CHD during awareness week.  We are bombarding their emails and Facebook pages with the cold, hard facts about CHDs.  (Like that they strike 1 in every 100 children born.  That they are the number one cause of infant death.  And so on and so on..)  We will be assembling goody bags for the children in the CICU (Cardiac ICU) at Children's Hospital, and delivering them-along with a handmade blanket for each child-to the hospital during CHD week.  We are holding our second blood drive in Madi's honor.  We are putting together informational packets to pass out at schools.
I plan on featuring the stories of CHD warriors that are children of friends of mine every day during CHD week, so I hope you will remember to check back here during the month of February and get to know these miracles and angels.  With education, we gain awareness.  With awareness, we hope to gain funding for research.  And with that, we hope to save more lives.
The thing is, our army can never be too big.  Won't you join us in our fight?  Every single person can make a difference.  All you have to do is take that first step.
Donate blood. (Memorial Blood Centers)  Donate money.( Lasting ImprintThe Children's Heart Foundation, Children's Cardiomyopathy Foundation, Congenital Heart Information Network, Children's Hospitals and Clinics of Minnesota)  Donate time.  Sign your organ donor card.  Read up on CHDs and then pass along what you know.   Knowledge is power.  We CAN win this fight.  We CAN and we WILL make the world know who we are.  Who our children are. 
For to know our children is to know the meaning of the word miracle.

Wednesday, January 4, 2012

The little things

When you are about to become a mother, everyone and their mother seem to have "the best" advice for you.  I honestly cannot tell you how many times someone told me to "just enjoy the small things" while I was expecting Madi, and then again while we were waiting for Sydney to be born.  Little did I know how much that lesson would resonate with me as the years went on.
As I have mentioned before, my kids are not your average kids.  They have medical issues which led to developmental ones.  Therefore, they have to fight a bit harder than a typical kid their age just to do things that you would normally not think twice about.
Now I really appreciate the small things.  The really, really small ones.  I have become quite the cheerleader of a mom, congratulating my children for things I never thought I would have to.  For instance, yesterday I commended Sydney for being such a good girl when she had her echocardiogram done.  We tend to really overdo it in this house.  Every little accomplishment is a reason for a celebration of some kind.  'Madi put her shoe on?  All by herself?  Wa-hoo, get that girl a sticker!' 'Oh my gosh, Sydney said a three-word sentence!  Anyone got any M&Ms?'
I hope that we aren't going to turn them into monsters that think they should be applauded for everything they do, menial or not.  Rather, the lesson I am hoping to impart is that we should count all of our blessings, no matter how trivial they may seem on the outside.  The fact that you tied your shoe isn't all that significant.  Till you see someone who is recovering from some type of accident and is re-learning to do it.  Going to the bathroom?  Yeah, everyone does it.  No big deal, right?  You have obviously not stood next to a loved ones' hospital bed, praying for pee. 
We live in a society that is obsessed with comparison.  Moms get their kids together for playdates, and it turns into a veritable competition about whose child can recite their alphabet.  In three languages.  Backwards. 
This year, many of us have made our usual resolutions. ( I have firmly resolved to lose weight.  Really.  This year, I swear.)  But I challenge you all in 2012 to take a look around you and count your blessings.  Instead of dwelling on what you do not have, why not rejoice in what you do?  Believe me, I know that at times that can be hard to do.  That's why I am calling this a challenge.  It may not always be easy but it certainly will be worth it.  Celebrating all the small things in life not only brings you happiness, but it will have a positive impact on all those around you.  You know how they say that misery loves company?  Well, positivity spreads like wildfire too.  Try it!
I plan on continuing to embrace every little victory my children attain.  Every step, every calorie, every inch or ounce that they grow.  And the big things?  I am not ashamed to admit that when Madi finally gets potty trained, I may just hold a ticker-tape parade.