My Desire

Yesterday, Dave and I took Bryce with us to attend a birthday party/blood drive at a church in Dallas.  We were really excited because we were going to personally meet two heart parents that Dave had met online from one of the support groups we are in.  There was face-painting; my three year old son Bryce liked the Batman symbol on one child's face, so we got in line.  But when it was his turn, Bryce decided that he didn't want to have his face painted (I'm starting to notice a trend of us waiting in line, getting to the front, just to have Bryce change his mind).  They also had a man making characters and animals out of balloons; this time Bryce waited and was rewarded with an Incredible Hulk balloon man.  And they had all kinds of entertainment.  The occasion was to celebrate the one year birthday and accomplishments of Miriam's one year old son, John, who was born with Hypoplastic Left Heart Syndrome.  He already had two open-heart surgeries, and there were pictures with answers to prayers written on them.  Dave also donated blood while we were there.  This is a very good idea and a way for heart families to give back to the community.

Donate blood!

We were connected to Miriam by Deborah, another heart mom with a baby who has the same diagnosis, DILV, as Brent.  These babies are proof that they can make it through open heart surgery.  Dave and I listened with earnest as the moms told part of their stories-the diagnosis, treatments, looking for doctors and hospital- and it really gave us encouragement and warmed our hearts to meet them.  Midway through talking with Miriam, though, I started getting teary-eyed; I didn't figure I was going to get emotional at this meeting.  I'm normally not an emotional person outside the home; I can put on a brave face in public whether I am in pain or worried about a matter.  I feel like I am bothering acquaintances with my problems if I wear my heart on my sleeve and share my worries, which is why I can be quite stoic at times.  I can also compartmentalize, but there would be no compartmentalizing here.  The realization that to get to this part of happiness where there could finally be some kind of normalcy by making babies suffer through these complex surgeries that were necessary to save their lives hit me like a ton of bricks.  This will be our family soon - going through anxious times wondering if the baby will make it through the surgery without afterwards experiencing complications such as strokes or arrhythmia that could lead to cardiac arrest and death.  The time is getting closer, and my desire is that the outcome will be like these two families.

Slowly these things began to process.  This would soon be our reality.  Dave loves to show me things he has found on the internet, and the other day he showed me the "Beads of Courage" program.  It gives children "...the chance to collect a different bead for each procedure or event while visiting the hospital for treatment. The goal of the program is to make a necklace with colorful beads that represent the unique and special journey of a particular child and to make something that they are proud of and want to share with family and friends."  It's a wonderful idea, and we definitely will be participating.  It's something that will remind us and Brent of his journey.


Dave had found this program from another blog that we peruse through:  "Living Whole Heartedly with Half a Heart" which follows another DILV boy born in April 2013.  I read the blog post about the  beads and then looked at the previous post on "How to change on NG tube for a 15 month old".  Again, it hit me like a freight train.  This was important information and it is something that we as parents may have to do to Brent.  After surgery, it is difficult for heart children to eat; their little bodies get tired quickly-their hearts have to adjust to the heart being mended, blood rerouted, so they are tube fed.  But the tube must be put down their nose and into the stomach, and little toddlers are very aware of what is going around them, and they are aware of what their parents are doing.  Attached with the instructions was a warning:  "...these are not graphic, but Jake is unhappy in them, if you don't want to see it, skip over the picture portion of this post."  I don't think I can handle looking at a child who is that unhappy.  I started bawling and told Dave that I didn't think I could handle doing this to our son.  Dave told me we would do what we had to; I agreed that we would have to, but what I really hope is that when the time comes, I can compartmentalize at that time, take away the emotions, and just think of it as a procedure we need to get through under 5 minutes.  I don't want my child to see me cry because I think it would distress him further.  I want to get it over quickly and love on him.  I don't desire this for my child.  This is one of the parts of being a heart mom that I dread, but I know we have to go through it to come out on the other side breathing a sigh of relief, like these other families.

Many of my friends know that I am into Christian apologetics - the discipline of becoming knowledgeable of the Christian faith so that we could "...be prepared to give an answer to everyone who asks you to give the reason for the hope that is in you..." (1 Peter 3:15).  These situations made me think of my desires - I desire for all children to live life happily and not have to suffer because of their broken bodies.  My desire is that no parent should have to see their child go through the pain of all the procedures done just so that their child can live.  I desire a world free from pain and sorrow and evil.  Many skeptics would look at all the pain and suffering in the world and say that there is something wrong with God; God could not be a good God for creating a world like this.  But I see all the heartache and know that it corresponds with what the Bible teaches - we live in a fallen world with corruptible bodies, but this world shall pass and there will be a new heaven and earth where our bodies will not fail us and there will be no night or pain or sorrow.  I see this as evidence that there is something that transcends us all, and so I find the argument from desire particularly convincing.  C.S. Lewis says it best:  “If I find in myself a desire which no experience in this world can satisfy, the most probable explanation is that I was made for another world.”  I desire that world for me, my family, and for everybody.

Grace