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December 5, 2011

Big Blessings in Small Packages

Jesus said, "Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these."  Matthew 19:14

Recently, I've really noticed the beauty in the way different children interact with David.  For adults, we're all conditioned to behave a certain way when we meet someone who is different than us.  Be polite.  Don't call attention to the difference.  It creates a very polite society, but not necessarily an authentic one, and maybe even a society with a lot of missed opportunities for growth. 

Abby, from the very beginning of our journey with David was and continues to be a beautiful example of how to live and love fully.  When I was pregnant with David, after we learned of his broken heart, I was devastated.  The grief and fear of our situation easily consumed me on any given day.  Abby, however, was oblivious to the grief and fear.  She was 2 years old, and she just wanted to play.  Life went on for her.  She didn't understand the risks, mortality percentages, and potential complications.  She simply lived each day, in the moment, excited that she would soon become a big sister.  The example she set, unbeknownst to her, was a gift to me.  I was able to view life from a different, more innocent set of eyes.  She lived each day with a perfect faith that Mom and Dad would take care of her and love her.  She didn't worry. 

Now, she is an amazing big sister to David.  She loves him so unconditionally.  She plays with him without holding anything back.  She loves him completely without fear of what could come.  She is proud of him and cheers him on whenever he accomplishes the smallest feat.  She continues to be a beautiful example of how to love unconditionally, without limits. 

Abby isn't the only one who's innocence speaks truth into my life.  My nephew, Andrew, is 11 months older than David.  Andrew lives in Michigan, so we don't get to see him as often as we like.  However, we were all together earlier this year in Florida for my Dad's wedding.  Andrew, like most children, was a little unsure of David when he saw him.  Authentically, he gave David the whats-wrong-with-that-kid look.  While that sounds harsh, at least it's real, and therefore, something to work with.  Andrew was especially taken aback, if not a little frightened, when he saw me giving David his milk through his g-tube.  I simply explained to him that David's milk goes straight to his tummy instead of going to his mouth first.  I also told him that David has a special heart which is why he saw scars on his chest.  He took the information and then walked away.  Very authentic.  The next time I gave David his milk, however, Andrew was almost excited.  He understood now, and was ready to be involved with David.  Andrew shared his toys with him, he wanted to give him kisses and hold his hand.  It was absolutely precious.  Andrew very innocently and authentically loved David.   

We attend Watermark Community Church in Dallas, and they have a wonderful special needs ministry called Kaleidoscope.  David is paired up with an adult buddy each week who accompanies him into the classroom with other children his age.  It took a few weeks, but now more and more children approach him to share toys and play with him.  They are accepting him, special stroller and all.  This warms my heart.  I love hearing that my son is being accepted socially, but I really love the innocence of the children who simply share and love and play with him. 

Finally, just yesterday, David was invited to his first birthday party for another heart friend, Ethan.  There were a few other children at the party, and after the initial stare-down, the children were wonderful, sharing toys and interacting with him. 

There is a reason Jesus said that the kingdom of heaven belongs to those who are like little children.  I'm no theologian, but just witnessing the way these children respond to David teaches me so much about what Jesus meant.  They are authentic, for better or worse.  When they choose to love and share, it is unconditional.  They are honest with their feelings yet still willing to love and accept someone who is a little different, even if it means getting outside of their comfort zone.  Yes, it is a blessing to witness that kind of love first hand, over and over again.  What a beautiful by-product of a seemingly undesirable situation.  Once again, God shows me in the most incredible ways that He knows what He is doing.

November 9, 2011

An Epiphany

Quick update, we're in our new house!  Hooray!!  We're mostly unpacked, so I am anxious to learn what our new "normal" will be.  This is such a huge relief! 

As for my post, let me give you some background information in the hopes that the rest of the post will make sense...

As a heart mom, I am fortunate to "meet" other heart moms and dads through blogs, Facebook, and sites like CaringBridge.  We connect and support each other in these online communities.  It is an invaluable way to connect with other people in similar situations.

One of these moms is Beverley Bouchard.  She is the mother of Leyda, a sweet girl born with Hypoplastic Left Heart Syndrome and a hypoplastic (or underdeveloped) right lung.  Beverley first reached out to me on David's CaringBridge site in our guest book.  While I value every comment left in our guest book, I especially love reading the comments left from other heart parents.  I started following Leyda's blog about a year and a half ago, not long after Leyda suffered her second stroke.  Beverley and her husband Jim were later informed that Leyda's heart was failing and due to other complications, she was not a candidate for a heart transplant.  She was given a short time to live.  After far surpassing the doctor's timeline, sweet Leyda was made whole on October 22, 2011. 

I can't overestimate the impact that Beverley's example had on me.  She shepherded Leyda through her life.  She knew when she brought Leyda into her home as a foster child and later when she adopted her that Leyda's health was poor.  She lovingly embraced her as her daughter, and helped Leyda experience life.  Her blog updates frequently included information about trips to the zoo, amusement parks, etc, etc.  They didn't let Leyda's condition and prognosis keep them from building memories, getting Leyda all the help possible, and simply living life.  When I feel defeated or depressed about our situation, I think of Beverley and the example she set.  She did it right...  I feel like my explanation is extremely deficient in expressing how inspiring this woman is to me.  If you want to read more about sweet Leyda and her amazing mom, click here.

Now for my epiphany...

Our heart support group, Amazing Little Hearts, has a Halloween party each year.  It's a lot of fun seeing all the cutie pies dressed up and getting to catch up in person with many of the parents I talk to online.  One of those friends is Megan.  Her little girl also has a complex medical condition involving more than just her heart.  Often times you hear heart families say, "Except for the scar on their chest you'd never know anything was wrong."  Well, when your child is in a wheelchair or a special walker the whole you'd-never-know-anything-was-wrong thing goes out the window.  Megan's daughter is in a wheelchair, so she and David have something uniquely in common when it comes to the rest of the heart kiddos.  As a result, Megan and I have something uniquely in common.  In our brief conversation we talked about the ways our children have improved over the past year.  David's signing a little more, Eavan is adjusting well to her wheelchair, etc, etc.  I said to Megan, "His progress is very, very slow but he's going in the right direction."  She replied, "And that's what's important." 

Bam!!

In that moment, it hit me.  Yes, progress is to be celebrated, but at the end of the day whether or not progress is made is not what is truly important.  More important than David's progress is how I shepherd David through his life. 

Beverley knew for quite some time that Leyda was not improving.  She was dying.  Yet, the way she lead Leyda each day was so much more important than the fact that Leyda was not improving.  She LOVED her.  She cherished the moments with her.  She let Leyda experience life, not for the sake of the experience itself, but because doing anything less would have cheated Leyda of the life she was given.  In turn, Beverley and Jim experienced the gift of Leyda more fully than if they retreated to their home until Leyda passed.

How has this revelation impacted me? 

I have peace in new ways.  I am more confident in our situation.  I still work hard for David, ensuring he gets the therapy he needs and his daily medicine, but I see him differently now.  Instead of looking at him wondering what his life will be like (i.e. will he walk, talk, how intellectually impaired is he, etc), I now focus on him, in the moment.  Rather than being sad about what happened, I see more clearly that God has a purpose in David's life, and it's safe to embrace that purpose.  I don't know what the future will hold for David, but he's here now.  That alone is something to celebrate even if he never walks, talks, or develops intellectually.  David's progress is irrelevant.  How I love David is relevant. 

****Disclaimer****
In no way do I think that I was smart enough to have this epiphany on my own.  I know fully that God whispered in my ear in that moment to reveal this to me.  A whirlwind of seemingly unrelated events all came together to make perfect sense.  I am grateful that God continues to carry us through our life.  In His Grace alone, I have peace


October 20, 2011

Hope vs. Doubt

David receives therapy through ECI (Early Childhood Intervention). We are really pleased with the therapists, the services they provide, and most important, David's positive response to the services.  Four different therapists come to our home each week to work with David in 30-45 minute sessions.  After working with them for over two years, we've gotten to know each other quite well from a parent/therapist standpoint.  One of my favorite things about his therapists is they each have a limit-less approach with David, meaning they don't put limits on what he can and can't do, therefore, they work with him accordingly.  David has made a lot of progress since he started therapy as an infant, and their approach to working with him has a lot to do with that.

Another benefit of this limit-less approach is how positively it impacts me, as his primary caretaker.  I try not to have unrealistic expectations about what David is capable of accomplishing, but I still believe that we simply don't know what he will be able to do.  If I limit him by assuming he can't do something, I may be the limiting factor for him rather than his own abilities.  

About two months ago, we had our annual review with the entire team of ECI therapists.  As part of the review, they asked me various questions about David's skills in five different areas (i.e. physical, cognitive, self-help/feeding, social, etc) to determine where he is developmentally.  This year, I felt confident that David made quite a bit of progress, so I looked forward to hearing the results of the assessment.  When they told me that David has the cognitive abilities of a 9 month old, the physical abilities of a 5 month old, and socially the abilities of an 8 month old, my demeanor fell through the floor.  By the time his feeding therapist shared her results she didn't tell me the age of his skills because she could see that I struggled to accept the news.  The therapists reinforced that the test wasn't completely accurate and didn't allow them to take into account things David does that are more advanced, etc, etc.

It didn't matter.  As soon as they left, I went into the bathroom and cried.  For the last two years we worked so hard to help him, and he only made five months of progress cognitively???  I understand that he has cerebral palsy, so physically I didn't have high hopes.  But this test implies there is also cognitive brain damage.  Yes, it's only one test, and I agree with the therapists that it isn't a good measure of his true skills.  However, when I'm honest with myself... the likelihood that David has a cognitive impairment is pretty high.

Flash back to August 2009 when we went to see Dr. Sacco, a pediatric neurosurgeon, about the shape of David's head.  Rather than telling us he was a candidate for helmet therapy, he told us that David would be a vegetable as a result of his brain damage and we should consider skipping the second-stage of his heart surgeries to let him die.  He said that David may develop some, but would most likely plateau at the capabilities of a one or two-year-old.  He said his head wouldn't grow because his brain wouldn't grow.  Wow... that's not exactly what we were expecting to hear that day.  We clearly got a second opinion, and proceeded with his surgery.

As David's head continues to grow, I always think, "He was wrong!  David's head and brain are growing!  I'm going to make an appointment just to show him how great David is doing and how wrong he was!" 

Then, when I hear test results from his therapists that he has the capabilities of a 9 month old, I think, "Maybe... he... was right."

Initially after the ECI assessment, I had thoughts of, "What's the point if he's not getting better?  Why should we put everyone through the strenuous schedule of therapy if he isn't responding?  If he is incapable of making progress, what will our future look like?" 

All of these questions are really just a reflection of my heartache and grief.  The test results and professional opinions, no matter how accurate or inaccurate, are a stark reminder of the difficulties my son faces each day.  Most of the time, I don't focus on the disabilities. I focus on the day-to-day/in-the-trenches work that must be done to reach the next milestone.  I celebrate his victories and how far he's come.  I soak up his beaming smiles and relish each cuddle and hug. 

But... Dr. Sacco's diagnosis lingers in the back of my mind, as do all of the other difficult diagnoses, waiting to pop up to the surface at the first sign of doubt. 

It's definitely a mental battle for me.  Hope vs. Doubt.  The biggest weapon I take into this battle is my faith.  I know God will sustain me when I cast my burdens on Him (Psalm 55:22).  I know that He has a plan for me, to prosper me and not to harm me.  Plans to give me a hope and a future (Jer 29:11).  And I understand that those plans were written with an eternal perspective, so while it may be difficult at times, my future and my hope are not limited to this life.  I also know that when I simply want to vent, He's good with that, too.  After reading through Psalms (half of which is a rant), I thought, "If King David can rant and vent, and he's a 'man after God's own heart' then I guess it's okay for me to do it, too." 

Each day I awkwardly walk the line between the mental battles of doubt and the hope I have in Christ.  I'm grateful for the blessing of David, but I'm equally aware of the struggles. Romans 12:12 best sums it up, "Be joyful in hope, patient in affliction, faithful in prayer."  Amen.

October 16, 2011

The Reason for this Blog

II Corinthians 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 weaknesses, so that Christ's power may rest on me."
My weakness, God's grace, and the all-sufficient power He gives are the reasons I'm writing this blog.

As many of you may know, my son, David, was born with a very rare congenital heart defect called Hypoplastic Left Heart Syndrome, or HLHS. He had his first of three open-heart surgeries when he was 6 days old. Recovery was going incredibly well until April 3, 2009, 11-days post-op. He went into cardiac arrest for reasons that are still unknown with absolute certainty, underwent 70 minutes of CPR, and stayed on a portable heart-lung bypass machine called ECMO for the next 10 days, twice the time we were originally told he could safely stay on the machine - he wasn't able to survive on his own after 5 days and his surgeon wasn't ready to give up on him.

On April 13, 2009 David came off ECMO and survived. To describe this day as surreal would be an understatement. I got up that morning assuming I'd be saying goodbye to David. We arranged for Abby to meet her brother for the first and last time, and even had a photographer capture our presumably final moments with David. God had other plans, however. Much to everyone's surprise, David survived that day! After 2 1/2 more months in the hospital recovering, he was discharged to come home. What a joyful day that was!!

Fast-forward to today... David is 2 1/2. He is very happy. His heart is doing exactly what it should be doing given his anatomy. We love our boy, just like we love his big sister, Abby. They are both tremendous blessings. However, we are and will continue to live with the side-effects of the CPR and prolonged time on ECMO for the rest of our lives. While his heart survived, his brain was permanently damaged. David has Cerebral Palsy as a result of the nearly life-ending complication with his heart.

There are two sides of this that co-exist at all times. David survived and we are filled with joy and gratefulness beyond measure that God allowed our son to live when most others in this situation do not. At the same time, our son is permanently disabled and there is ongoing grief that comes with that.

The grief comes at unexpected times. For instance, last year at Christmas time, I took a quick trip to Target to pick up a few odds and ends. Passing by the toy aisle, I noticed the toys that were on display for children ages 18 months and up. A riding toy in particular caught my eye. In the 2 or 3 seconds it took for me to glance up at the toys, see the age-appropriate toys for my son, and realize that those toys were in no way appropriate for him, grief hit me. It was certainly unexpected given the task of errand-running I was on. I was sad that those toys were in no way appropriate for his skill level, and sad as I wondered if they would ever be appropriate for him.

So what do I do with all of this? It feels really messy to me. Fumbling through each day with therapies, a very regimented feeding schedule, and little time to simply be a mommy to him, I long for easier circumstances. I don't do well with chaos. I like a routine. I try to go with the flow, but I'm not very good at that. I am often overwhelmed.

This is where this blog and the above referenced verse comes in. I intend to "boast all the more gladly about my weaknesses, so that Christ's power may rest on me." I can't do this myself. Some people tell me that God knows who to give difficult things to because He knows who can handle them. I completely disagree. God purposely and lovingly gives us more than we can handle so that we will look to Him for strength and provision. He knows that HE is what we need. When we are focused on Him, we can experience joy, peace, and contentment regardless of our circumstances (see Philippians 4:7). I know this, but am really deficient when it comes to applying it. That's where grace comes in. "My grace is sufficient for you..." I trust this. I pray for God to lovingly transform my heart to desire Him more, to desire His loving provision more than easier circumstances.

In a nutshell, this is why I started this blog. I hope you will join me as I fumble graciously toward Christ - His provision, His strength, and His unending love.

Jennifer