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September 11, 2012

Gray

In an earlier post, I mentioned that I felt ready for whatever God had planned for David.  "My job is to rest in Him and believe in His plan and purposes, regardless of the outcome."  Truthfully when I wrote that, the "outcome" I referred to was really black or white - David would either survive beautifully or he would die.  I never planned on gray. 

We've been in a state of gray for over three months now.  Will he or won't he?

The conversation is moving toward going home with milrinone support (milrinone is an IV medication used to help people in heart failure).  This is again a gray area.  We aren't going home with big celebrations and feelings of victory for reaching a huge milestone.  We aren't going home fully defeated either.  We're going home with more uncertainty than we had when we left. 

I suppose I shouldn't be so bold to say "we're going home."  We're still at least two weeks away from that and we've learned that a lot can happen in two weeks, but for the sake of my thought process, let's just go with it...

Justin and I sit on our sofa every night to talk about the day, our fears, frustrations, and wounded hopes.  We are mentally exhausted.  We wonder how much longer will we live in a state of uncertainty.  Then we think of the resolutions to the uncertainty and those scare us, too.  Our best case scenario is that David's heart will recover enough to come off the milrinone in a few more months.  Then we will work on the long road to physical recovery.  All the work we and his caretakers put in to help him sit, eat, grab, roll and more will begin again.  In some ways he's far from where he was prior to the surgery and that is simply discouraging. 

The other scenarios we come up with aren't so rosy, and I'm not ready to share them yet, if ever.  Going down the "what if" road is never a good thing.  I can't tell you how easy it is and how destructive it is.  It takes our focus off of God every time and leads us to crappy places.  We just want to know what will happen to David and it's not our time to know yet.  That is a hard, hard pill to swallow sometimes. 

Nothing that we can see from our perspective is either black or white.  It's all a muddled gray. 

July 8, 2012

Pride and Boats

I’ve been a bipolar Christian over the past few weeks.  On any given day, I can be at peace, full of joy at our sufferings because of what it’s producing in me (James  1:2-4).  Or I can be more Psalm 22:1, “My God, my God, why have you forsaken me?  Why are you so far from saving me, so far from the words of my groaning?” Lately, it’s been less day-to-day and more minute-to-minute with my swings. 

Obviously it’s a result of the up-and-down, prolonged road David is taking with his recovery.  It’s a pretty helpless and painful feeling watching your child lie in bed, sick, without the power to help him or comfort him.  When I think of how this looks from David’s perspective, it’s even worse. 

As I attempt to cope with my feelings, thoughts, and fatigue, my old-habit, broken ways of dealing with life become more and more evident.  It’s like being on a boat with a few small holes.  At first, you can look past them.  As time goes on, it gets harder to ignore your soggy shoes.  Soon, the holes seem gaping as the boat fills with water and you wonder “why did I think these holes wouldn’t matter?”

Right now my prideful desire to control my life and everything in it is starting to look more like gaping holes.  When things are “normal” I justify my actions by saying that I need to be organized to run our house and manage David’s care.  I (somewhat) unintentionally compartmentalize my life into things that God will control and things that I will control.  The big things - health, freak-accidents, financial provision, etc. - God handles.  The smaller things - how I manage financial provision, household administration, daily tasks, etc. - I believe on some (ahem… prideful) level that I can handle these things.

Why??  Why do I do this?  Why haven’t I learned??  (see Romans 7:15)

This leads me to this storm.  My little boat is filled with water, and suddenly I feel insecure and ill-equipped with the tools that I have.  Why did I think I could do any of this on my own?  Why would I want to after all the ways God has shown me His power and love for me in the past?

I find myself desperately seeking something to control.  I realized last night after lying in bed for over an hour thinking about painting rooms and glazing cabinets (don’t tell Justin) that what I really wanted was to be in control of an out-of-control situation.   I confessed it, but I still had a hard time falling asleep.  Realizing I have a problem and knowing how to deal with it are two different things.  If I knew how to deal with it myself, I probably would have by now.  This means I’m in a situation where I have to rely on God to change me, change my heart not my circumstances.  Here’s where fear and pain and growth and faith all come together, for the better. 

I don’t know what tomorrow will bring, but I know that I will go down with my boat if I don’t let go of my desire to control our situation.  I must stop looking at the rising water and start looking to the One who does have control over the boat, the water, and physics.  Not to mention, He loves me more than I know.  I must learn to look to Him at all times, not just in the most precarious situations.  With His help, I can do this. 

June 5, 2012

Game Day

My little boy is currently in surgery.  I have my typical game-day numbness mixed with the occasional nervousness that extends from my stomach to my teeth.  Preparing for this day was a real trek.  About two to three weeks ago, fear really started to grip me.  Knowing that fear is not of God, I dove into my Bible and into prayer.  It was like preparing for a spiritual marathon or sporting event.  I felt like I was in training.  I really focused on verses that emphasized believing and trusting in God.  Like in Mark 5:36, "...Don't be afraid; just believe."  Like I was reminded before by another seasoned heart mom, my focus should be on God, not the storms.  My job is to rest in Him and believe in His plan and purposes, regardless of the outcome. 

Between that and the many, many prayers being said on my family's behalf, I'm doing pretty good.  I told one of David's buddies in the Kaleidoscope Ministry at Watermark that we can feel our load lightened during times like this from all of the prayers offered on our behalf.  Thank you, and please keep them coming! 

I hope to update more frequently during David's recovery, but right now I'm averaging a post per month, so we'll see.  :-)

April 24, 2012

A Breakthrough of Sorts

Unbeknownst to me, I had a breakthrough with my emotional overload, but I'll get to that in a minute...

First, school is going well for both of us.  David loves it.  He lights up when we get out of the car, and he goes into full-flirt mode as we cross the school driveway, passing by his first flirting victims, to his wheelchair or Kidwalk (depending on the week) parked next to the school door waiting for him.  We load him up and let him drive or walk himself (still with some assistance on our part) through the pair of double doors into the long hallway that takes him to his classroom, flirting as often as possible along the way.  Abby proudly walks with us and usually helps in some way, either by helping him steer his Kidwalk or carrying his backpack.  She loves it, and it warms my heart that she does.  When we drop him off in his classroom, he continues to be all smiles.  He gives us kisses before we leave, occasionally watching us walk out of the room, with a slightly smaller smile, but never with tears.  Because he loves it, I love it for him.  On top of all that, he's learning.  It's still subtle, but he's learning.  I can tell he's more comfortable in new situations.  He figured out that he can roll around on the floor with purpose, to explore, not just for exercise.  We're hoping to use this new discovery as a motivation for crawling.  He loves being around his classmates.  I know that he's in an environment at school that I couldn't provide for him at home.  It's a good thing for all of us.

On to Anniversary Season... This year, April 3rd happened to be the day that the Dallas area had a large-scale tornado outbreak.  Needless to say, I was a little distracted from the anniversary.  The kids and I weathered it out in our pantry while Justin was at the fire station.  After the literal storms passed and I was in bed that night, I had more of a sad heart than feelings of complete despair and grief.  I looked at my clock.  10:10.  Three years ago at that time we were in a frantic rush to get out of the house and get to the hospital.  10:23.  We were on the road racing to the hospital.  I reflected on the chaos in our lives as I remembered it.  Then I thought about the chaos in David's room, of which we saw the aftermath.  It was a mess in there.

Then, for the first time, I thought about what David went through.  Not just the physical trauma of CPR - I could see the finger print bruises on his sternum for days following the event - but what happened to him inside his mind.  How did God minister to him during that time?  What did he experience?  I can hardly fathom that it was fear, so I reason that it was peace.  That brought a few peaceful tears to my eyes, not completely from grief, but awe.  I fell asleep thinking that I'll never know in this life how God cared directly for David during those 70 minutes and the days and weeks to follow.

Anniversary Season brought a little more healing this year, for which I prayed.  I didn't fully realize how much healing it brought until I paid a visit to a sweet baby and her mother on Easter Sunday.

Our church is about a mile from David's hospital.  As we were singing on Easter Sunday, I once more reflected back to Easter three years earlier.  Immediately, I knew I wanted to pay an impromptu visit to the CHSU (heart unit) to see if there were any families I could encourage.  At the hospital, I entered the elevator to head up to the 3rd floor and the familiar hospital-smell hit me.  "Ugh.  We're going to be back here soon."  I put that thought away and headed into the heart unit.  I explained to the nurse at the desk, one of David's former nurses, why I was there.  She lead me to the door of a sweet little girl named Charlotte and her mother, Sarah.

Talking with Sarah, I quickly learned that our children had so much in common.  Same defect, an eventful recovery, longer-than normal hospital stay, a young older sibling at home, etc.

Within the first few moments of visiting, I felt something familiar come over me that I hadn't experienced since I saw David after his last open-heart surgery: I was about to faint.  Not wanting to share my secret with Sarah, I simply sat down in a nearby chair and focused on breathing and praying while she spoke.  She shared that Charlotte would be going home later in the week after a 9-week stay.  She asked me questions.  I gave brief answers because as soon as I started to speak I felt more and more light-headed.  After about 20 minutes, part of which was shared with a hospital volunteer who stopped by to visit, I wished Sarah a happy Easter and went back to the first floor where my family patiently waited for me.

Wow.  That was really unexpected.  I wondered why that particular visit affected me in that way, when I had visited other children in far worse condition and I was fine.  I thought, maybe it's because David's about to be back there and the elevator smell really triggered something in my mind.  Maybe I should have eaten something before I went into her room.  I also found talking about it, or even really thinking about it produced a physiological response.  Even now writing this, I'm a little shivery (and it's not because of the cool temperature in my aunt's basement).

Before I left Charlotte's room, I got the name of Charlotte's blog so I could follow her progress in the months and years to come.  Despite being fainty, there was something about this family that I really connected with which made it all the more frustrating to me that I was fainty because it could have been a really good visit!  So, I pulled up the blog and read through Charlotte's ups and downs.  It was such a remarkable journey that she went through.  My heart went out to her family even more.

On the Tuesday following Easter, her blog post was about gearing up to go home, a very exciting and busy time for a family.  I eagerly checked for more updates Wednesday, and then again Thursday evening.  What I read floored me.  The post was entitled, "She Closed Her Eyes."

"It is with heavy hearts that we share with you OUR BELOVED - SWEET CHARLOTTE - unexpectedly died at 7:03 pm.  Her heart was fine up until the second it stopped..."  


What?!?

I'm not sure I have the words to explain the complete disbelief, shock, and overwhelming sadness I felt at reading that post.  Within seconds, I started to sob.  I cried for a long time.  Luckily the kids were in bed and Justin was at the fire station, so I let it all out, snot and all.  Every CHD death is sad, and for some reason I connect with certain families more than others, and therefore mourn the loss a little more.  But with Charlotte, something was very personal and very, very close-to-home.  I didn't just cry, I sobbed.

Why?  How?  I just saw her and she was fine.  They were about to leave the next day!  How?

The following Sunday, one week from the day I met them, I attended the visitation for Charlotte.  Her parents were doing amazingly well.  I didn't have the nerve to peak into the blanket-lined, Moses-style basket that held Charlotte's body for fear of fainting.  I felt strongly, however, that God lead me to them on Easter and I wanted to continue to walk with them through this storm in whatever way I could and let God use it to comfort them in whatever way He would.

Through Charlotte, I learned that I'm no longer stuck.  I'm healing.  Charlotte didn't heal me, but God used her to show me that He's healing me.  I am fortunate to be the benefactor of a tiny piece of God's plan for Charlotte's life and legacy.  I feel emotions again.  I'm not completely numb.  These are good things, even if it means they come with fainting and tear-filled mourning.  These are good things.  This is a breakthrough for me, and it's an answer to a prayer.

***I'm grateful to have known Charlotte and to know her parents.  Please remember them in your prayers as they grieve the loss of their daughter and learn their new normal.  If you would like to offer them some encouragement you can visit their blog, www.hintofhope.blogspot.com.***  


March 19, 2012

Day 1... Success?

Well, David's first day of school is officially under our belts, and overall we did well.  David was so proud and excited when I took him to his classroom.  He was all smiles at his teachers and new classmates.  I think he was most excited about being around the other kids his age and size.  He's very social.  Abby was a proud big sister, although I think it was a little surreal for her.  She asked me this evening, "Is David going to my school again tomorrow?"  :-)  She's taking it all in. 

As for me, I didn't cry.  I'm not sure if I count that as a victory or not.  For the few hours I was home ALL BY MYSELF (say that with genuine excitement!) this morning, I was a bit lost.  I intentionally didn't try to accomplish anything.  I simply wanted to let the emptiness of the house wash over me a bit.  I felt shell-shocked most of the morning and early afternoon, emotionally hazy.  It's going to take some time for it all to sink in.  Considering my emotional sponge is already saturated with unprocessed three-year old emotions, it may take longer than normal for the my-boy-is-in-school emotions to get processed. 

Here are some words from a friend that were really helpful: "The thing I would encourage you with is to look at His face, not the storms; we are not defined by our children... despite all that we do and give for them..." 

This was great.  So simple, and so powerful.  My goal this week is to leave my to-do list and my fun-project list on the counter to gather another weeks worth of dust and devote my nearly three hours of me-time in the morning to focusing on God, being quiet, reading His word.  I'm hopeful that His healing will come, if not this week, then soon.  I expect it, and I know He looks forward to sharing it with me.

On to Day 2!

March 17, 2012

Here it is again

Tomorrow is David's 3rd birthday.  This time of year is so strange.  I should be thrilled to celebrate my child's birthday, especially after all he's been through, but there's always a cloud hanging over my head.  It usually starts to develop in mid-February, and this year was no exception.  I call it Anniversary Season.  It marks all the big dates in David's first month: March 18, April 3, and April 13.  I don't really enjoy it until the end, and his birthday is the official start of the season.  Therefore, his birthday is very bitter-sweet to me. 

This year, Anniversary Season is compounded with his first day of PPCD (Preschool Program for Children with Disabilities) on the 19th, and his upcoming surgery in June.  It's really a perfect storm of emotions for me, so I'm currently shut down emotionally.  It's my defense mechanism when I can't process all that's going on inside my head.  I don't choose it, rather it simply happens.  The first time I shut down was the week after he came off ECMO.  The intensity of everything was too much, and I was no longer able to cry.  It's not that I didn't want to cry or need to cry, but something inside me stopped the tears every time they started to come.  It took me awhile before I could cry again, nearly a year.  Lately, the inability to cry has resurfaced.  I'm emotionally overwhelmed with everything on my plate.

So I'll start with Anniversary Season...  This is the time of year when my mind automatically reflects on all the difficulties we went through with David.  It's difficult because these weren't horrifying things that happened and we moved on from, these are things that happened and changed our lives permanently, for better and worse.  We have a disabled son.  It hurts me to say that.  I'm sad to say that.  Shopping for his birthday is difficult because his abilities don't coordinate with the age-appropriate toys on the shelf.  I'm reminded of his disability on his birthday.  The fact that he doesn't really understand that it's his birthday or what a birthday is is hard.  Then comes the anniversary of the "event," April 3rd. This is the hardest day for me.  Knowing how close he was to death and the permanent brain damage he sustained as a result of it.  This day is the reason he's disabled.  Guilt tells me I should be thankful that he didn't die on this date, and most of the time I am, but not right now.  Finally and joyfully, we cross the finish line of the Season on April 13th.  I can't wait to get to this day.  By the time we reach the 13th, the mourning has passed and the celebration of the miracle begins.  I make bigger plans for this day than I do his birthday.  The contrasting emotions of this Season reminds me of the sadness and grief on Good Friday verses the total joy and victory on Easter Sunday.  Clearly my son is not Jesus, so I don't mean to offend anyone with that analogy.  It's really the only other example that encapsulates the emotional swings of the Season.  I'm confident the analogy will be even more vivid once I have the eyes to see David's whole story from beginning to end, but until then...

Next, PPCD...  This is a strange one.  Simply put, my son is starting preschool.  He'll go five days a week for three hours a day.  Most moms face the time when their little ones start school.  With Abby, it was pure excitement, for her and me.  She was ready and independent and incredibly excited.  David, however, is just different.  I really think he will benefit tremendously from PPCD.  He's very social, and loves being around other kids his age.  I'm excited to see what he will learn and how he will develop in that environment.  For me, it's a huge transition.  Huge.  I've been his primary caretaker since the beginning.  Even though I get a lot of help, I'm still the go-to person whenever there's a question.  Now I'm handing the reins over to someone else for a few hours a day.  It just feels different.  David requires the constant care of a 7 or 8 month old.  Sending him to school to let someone else care for him is going to be a big adjustment for me. 

Finally, his surgery...  Ugh...  I'm really not excited about this.  There's no reason to think that David won't do well, but things happen.  I'm a little scarred and scared.  I know that fear is not from God, so it means I'm being tugged at and pulled on by the other guy.  It doesn't help that it's Anniversary Season because all my fears tend to be heightened at this time of year anyway.  At the end of the day, David is only here temporarily, as am I.  He's on loan to me.  He doesn't truly belong to me.  Despite all of that, I'm still afraid of losing him.  I simply don't want to be in that club of mother's who have lost a child.  I struggle with holding on to him tighter than I hold on to Christ, trusting my plan rather than His.  Romans 8:18 says, "I consider that our present sufferings are not worth comparing with the glory that will be revealed in us."  During this Season, my actions show that I don't trust this verse.  I know that it's true, but I'm not putting my faith in it.  I'm putting my faith in my plan and comfort level. 

All this to say, I'm overwhelmed right now, and I have been for awhile.  Usually writing helps me process stuff, but this has been harder.  The words have been more jumbled in my mind and not incredibly coherent, hence the lack of blog posts.  I hope to write more over the coming weeks...

February 8, 2012

Reflecting - The Conclusion

What do I do with all these reflections? 

Thoughts are great, as are good intentions, but they don't do much to help others.  As I mentioned in my last post, I want to actively love these families who have been through so much and in many cases, lost so much. 

This is where I get overwhelmed. 

I pray for these families, but even in my prayers I start to sound like a broken record.  For the record - I believe praying for someone is the most loving thing you can do for them.  To ask God to intervene or act in their life is without question the best place to start when reaching out to someone, especially when thousands of miles separate you.

So as God puts it on my heart to pray for these families and others, I can't help but wonder, "How can I be the tool that God uses to answer my own prayers? What abilities do I have to help the people I'm praying for?"

I recently finished reading, "The Hole in Our Gospel" by Richard Stearns, the President of World Vision.  I highly recommend reading it.  Here's a sampling of the wonderful message in the book:

"It starts with you.  In the end, God simply calls you to be faithful to the things He has given you to do.  He doesn't require you to be a superstar, just faithful and obedient, by praying, loving, serving, giving, forgiving, healing, and caring - doing small things with great love." 

God gave me unique abilities, experiences and interests that are meant to be used for purposes such as these.  Some might call these gifts or talents. By the way... He gave them to you, too.  I'm so thankful for people who have used their resources and gifts to faithfully answer the call and, by doing so, set a great example for the rest of us...

- Jared Broussard - the founder of Heartwaves.org, an online community for all things CHD.
- Matt and Sarah Hammitt - the founders of Whole Hearts Foundation
- Kristine McCormick - a mother who lost her daughter, Cora, at five days of age to an undiagnosed CHD, and is now working with lawmakers to implement new pulse oximetry screening standards for newborns. 

Now, it's CHD Awareness Week.  My Facebook friends are filling their status' with facts, statistics, and government proclamations about CHD awareness.  These are all good things.  Educating people about the number of children born with a CHD (1 in 100) and the number of children who die from a CHD each year (4000 children won't live to see their first birthday in the United States alone) are important first steps in raising awareness.

But what's the point of awareness if there is no action.  James 2:14-17 says "What good is it, my brothers and sisters, if someone claims to have faith but has no deeds? Can such faith save them?  Suppose a brother or a sister is without clothes and daily food.  If one of you says to them, 'Go in peace; keep warm and well fed,' but does nothing about their physical needs, what good is it?  In the same way, faith by itself, if it is not accompanied by action, is dead."

Awareness about statistics is nice, but not very useful without actions to back it up.

I went out on a limb a few days ago.  I discovered a place on WhiteHouse.gov that gives citizens the opportunity to create a petition.  I searched the current petitions for anything related to research funding for CHD's, but nothing was there.  So I created a petition.  We need 25,000 signatures by March 3rd.  If we do this, President Obama's team will review the petition and issue a response.

I believe WE can do this.  I cannot do it alone. 

If you haven't signed the petition yet, please follow this link and be patient.  I'll save my jokes about the federal government messing up something as simple as an online signature for another time.  Your signature matters.

If you already signed the petition, thank you.  And to quote Andy Dufresne from The Shawshank Redemption, "...if you've come this far, maybe you're willing to come a little further."

I'm asking each one of you to personally invite 10 friends and/or family members to sign the petition.  Sharing it broadly on social media sites is helpful, but with a personal email, you can easily include extra information, including a link to this blog if you feel that would be helpful.  Investing a few minutes of time to sign something electronically is a great way to fight the complacency brought on by information inundation. 

I sincerely believe when we answer God's call to be faithful to the things He has given us to do, however big or small, God can and will do amazing things through us.  Collectively, these small things done with great love can make a huge difference!

From a special birthday celebration, to fighting forgetfulness, to use our talents to take action, this was all too much for one post.  Thanks for following along with the thoughts of my heart!

February 7, 2012

Reflecting - Part 2

Over time, the dramatic events of April 2009 are slowly wearing down in my memory.  I don't like it.  I'm not sure why they're slipping in significance, but I guess time and life wear them down.  I feel the need to share with others how huge it was that he survived.  How he had less than a 10% chance of surviving off ECMO...  He endured 70 minutes of CPR...  He spent twice as much time on ECMO as he should have... It's a big deal, really it is!

Who am I trying to convince?

The Old Testament is littered with stories of God doing amazing things for the Israelites: providing food from heaven, giving them victory in impossible battles, taking them across bodies of water, etc. At the tail-end of many of these stories we see them build or set aside some sort of monument or memento to remind them of all that God did for them.  Despite their best efforts, memories faded and the acts of God that were so amazing at one time slowly became common-place, matter-of-fact.  A what-have-you-done-for-me-lately attitude replaced awe and humble gratitude. 

How true for me today.

Our reminder of God's work hangs over David's crib.  A simple hand print and two little footprints framed with the date April 13, 2009. The hand is Abby's and the feet are David's.  We started that day preparing to say goodbye to David.  We made arrangements for Abby to meet her brother for the first time so that when she came to his funeral it might be less confusing.  The Child Life Specialist at the hospital helped create this memento of tiny prints for us.  Rather than saying goodbye to David that day, we witnessed God's intervention in our son's life.  Now, the prints that hang over his crib serve to remind us how far David has come and all that God has done in his life and ours.


Even with this beautiful reminder, the enormity of what God did continues to shrink in my memory as one day blends into the next.  I hate admitting that. 

Talking with Liam's mom, we both want our children to understand what happened.  We don't want our sons' stories to be matter-of-fact to our other children.  My Uncle Franklin was killed in a car accident when he was 18 years old.  My mom was 14, so I was a long way from being born.  However, his death was matter-of-fact to me growing up - "My mom's oldest brother was killed in a car crash before I was born, so I never knew him."  That was the extent of my knowledge and interest in it as a child.  It wasn't until Abby was born that I asked my mom about how he died.  Then it became real - real to me that my Granny and Daddy Hob lost their oldest child after he spent a week in the hospital after the accident.  Hearing the story, I internalized it.  It was and is different now. 

David's, Liam's, Leyda's, Jaden's, Scarlett's, Lillian's, Joshua's, Ewan's, and Owen's stories are incredible each in their own right, and these are just a very few of the children I've learned about since we started this journey with David.  Each child has a story too big for words to describe.  We are called as Christian's to love one another.  For me answering that call to love these children and their families means to invest my time and energy and emotions in their lives - to remember them and what God has done for them and through them.  I pray that none of their stories will ever be matter-of-fact to me.  God continues to do big things for all of their families and I don't want to take that for granted...

Reflecting - Part 1

We attended a birthday celebration for a little boy named Liam this weekend.  There were many colorful balloon, lots of family, little children taking it all in but not entirely sure of what was going on.  Family members reminisced about earlier times with dampened smiles on their faces. 

This was no ordinary 3-year old birthday celebration, for sweet Liam passed away when he was only 3 months old from complications with his broken heart.  We celebrated Liam's birthday by his grave, along-side his family, by releasing festive balloons into the air in his memory.  We celebrated his life, reflected on his time on earth, and how we were all changed by his sweet presence in our lives for those few months. 

Justin and I first met his parents when David was in the hospital as a baby.  We saw his family in the waiting room, passed them in the hallway, and saw them coming and going from the room adjacent to David's in the CHSU - the ICU for heart patients.  We overheard snippets of their conversations with the doctors, a few of which are seared in my memory as pieces of David's story.  Liam finally got to go home with his parents on April 13th, the day our little guy surprised us all by surviving ECMO - two very different ranges of emotions from two different heart families on the same day.

Liam was doing well at home.  He came to the hospital on a Thursday in May for a swallow study.  When he was admitted that afternoon for oxygen desaturation issues, it seemed to be minor.  I'll never forget his mom's delight at how well he'd done in the swallow study.  He took about 20ml of formula from a bottle and she was extremely excited about his progress.

As Thursday turned into Friday, and then Friday into Saturday, Liam's oxygen numbers weren't improving.  By Sunday, Liam went into cardiac arrest.  The team of doctors were able to get him on ECMO, but there was too much damage.  Liam passed away the next day on Monday, May 18th.

Our journey through HLHS is intertwined with Liam's family.  We consider it an honor to get to celebrate his birthday with his family.  What I took away from Liam's celebration Sunday is how easy it is to go through each day hearing about some amazing story or some tragedy, a baby who receives a heart transplant at the 11th hour or a baby who dies during childbirth, and miss completely the significance of the events.  I'm completely guilty of it.  Perusing the status updates of my "friends" on Facebook, watching 24-hour news channels, simply getting on my internet homepage, I am completely inundated with information.  I'm not quite the old fogy who says "In my day, we didn't have the internet and things were better!"  (please read that in your best old person voice).  But we often miss out on something deeper, more subtle, less flashy, and completely real by submerging ourselves in our online world.

What we miss are real people and real stories of amazing triumph and loss, none of which we could possibly take in in the seconds it takes to read a sad or amazing status update before scrolling down to the next one.  Submerging our lives into Liam's family's, if only for an hour at his grave, reminds me that yes, these stories are amazing and incredible and sad and tragic, all in their own right. Family's are forever changed and scarred. I never want to forget the significance of these events. I don't want to take them for granted...

January 30, 2012

Frustration and Guilt

I'm annoyed that this is the first time I've written in nearly two months.  Yes, the holidays are a busy time, so I cut myself some slack for that.  Now January is nearly over and this is my first blog of the year.  I don't put pressure on myself to write updates.  The words come when they come.  The lack of routine when it comes to writing is part of the life of a special needs parent and hopefully lends to the reality that is raising a child with extra needs.

I'm frustrated because writing is an outlet for me, like many writers.  My lack of writing is a symptom for the lack of me-time in my life.  I'm frustrated that I'm grasping for moments to myself in less-than constructive ways.  I watch tv rather than read a book.  I eat a bowl of ice cream instead of going for a walk.  I'm allowing bad habits to form.  Habits that are more hurtful than helpful.  I'm frustrated that I have the desire to do a lot of "good" things, but I either lack the freedom or believe that I lack the freedom to do them.  I felt guilty for sewing curtains for our living room because it puts an extra burden on my husband to care for the kids without my help.  Then I get annoyed when he asks me for help and I have to stop what I'm doing.  Start-stop, start-stop.  There is absolutely no consistent routine in my life and it's driving me crazy!

Add a healthy - or not-so-healthy - serving of guilt to the fact that I need help taking care of my son each day, and it makes for a constant battle inside me.  I regularly feel like I just can't hack it as a mom.  I regularly feel like, "Lots of mom's are busy and have more kids than I do, so why am I struggling so much with taking care of the two I have?"  I struggle with seeing myself as a spoiled, detached mom who doesn't want to be inconvenienced by raising her child, so I outsourced it to someone else.  When I talk about the difficulties, I'm frequently met with someone who "understands."  "I understand, I have four kids."

With all due respect, no you don't. 

I don't understand what it's like to raise four children, and you don't understand what it's like to raise a child with special needs.  When I'm told that a mother of two, three, four or more understands (moms who do the job everyday, on their own), it drives home the point that I can't handle it.  I hear, "What's wrong with you?  I don't get any help, and I can do this job."  Here comes the guilt for being overwhelmed.  Here comes the guilt for qualifying for 40 hours a week of in-home help.  Even with 40 hours of help each week, I still find myself overwhelmed with the amount of work to be done.  Leaving me, once again, feeling like I can't hack it as a mom.

I know deep down that these are all lies that the enemy wants me to believe, and sometimes I do.  It's a battle to go to the source of life each day when the lies are so convincing.  Many of the scriptures about getting strength/relief from Christ revolve around going to Him first.  He's there waiting, and some days I'm too busy throwing a pity-party to get up off my butt to go to Him.  Even when I'm down (like today), I know I'm never alone.  For that I am grateful and hopeful that tomorrow I may see through His lenses rather than my own.