Counting Our Blessings

I tell people all the time that Brent is going to be my "perspective" child.  Each of my kids have influenced my life in different ways and taught me different things about myself and the way I view life.  I thought I had a balanced perspective on life before, but Brent is already taking it to a whole new level - and that is such a good thing.  For sure the weight of his diagnosis and the uncertainty of the future that lies ahead still hits me like a ton of bricks in unsuspecting moments - often at night when my mind has nothing to do but run wild in those moments between wake and asleep.  But, as the shock of the initial news has worn off and the clarity of mind and purpose has returned, it has also become easier to recognize the many blessings that we have.  Some of the many blessings that I am thankful for include:

• Brent.  I remember telling some of coworkers shortly after having Bryce that I was thinking about #4 already.  It took us a few years and a few conversations about timing, but the truth of the matter is, I always knew I wanted #4.  I imagined what he or she would look like, Bryce would be a big brother to them, how they would be the perfect completion to our family.  Brent is the fulfillment of that dream, that wish, that longing of the past few years.  No matter the road ahead, every day of it with him will be a blessing.  I hope he reads this one day and knows and believes that for himself as well.
• Quality Healthcare.  I have moved around a few times with my job, but long story short, we recently moved to Dallas, TX in 2013.  This puts us within 45 minutes from our house of one of the top 20 children's pediatric heart hospitals in the country.  In fact, Houston is number 2 in the country, and just a few hours south of us.  And another of the top 50 is just about an hour away in Ft. Worth.  Bottom line, we have options where we live and if we are ever not comfortable with our care in Dallas, we can take him a few hours south to Houston to the 2nd ranked children's heart hospital in the country.  In addition, we will be delivering at St. Paul which has a level 3 NICU which specializes in infants with serious medical problems and is right next to the hospital where Brent will have his surgeries.  We are touring both hospitals on July 16th and will make our final decisions around that time, but for now, we feel really good about his treatment options here in Dallas.
• Insurance.  Although my insurance has high family and annual out of pocket expenses, which I know I will be paying for the foreseeable future, I am still very thankful for it.  I can pretty much take Brent wherever I want.  It's not an HMO, so I don't have to jump through hoops to get referrals, coordinate care, worry about denials, etc.  So far, all I have had to deal with is deductibles and co-pays.  But, as long as I can take my son wherever he needs, I'll deal with that.
• My Family.  My family has been very supportive during this time.  My sister took the initiative, without me asking, to set up a gofundme page to help with Brent's medical expenses.  You can click on the link and contribute if you like.  It's all voluntary and can be completely anonymous.
• Support Groups.  We have joined a few online support groups for congenital heart defect families.  The other day, we were looking into storing Brent's umbilical cord blood and tissue in the hope that stem cell therapy might one day be able to help or cure his defect.  The initial cost of this was going to be over $4,000 with annual storage fees of $260.  Before signing up, we asked one of our support groups, and they knew about a program for kids with heart defects and other serious conditions where the initial costs are waived and you get the first 5 years of storage for free.  We called to see if we qualified, and we did!  We get our initial costs waived and free storage for the first 5 years.  If we don't use the cord blood and tissue by that time, we can donate or pay the $260 a year to continue storing.  But, we would have never known about it without our online support group.
• Having Time to Plan.  I'm grateful we learned about Brent's diagnosis in advance.  Many parents of CHD kids don't.  They learn about it after the baby is born, all the while expecting to deliver a completely healthy baby.  They have to deal with the shock of very frightening, often life and death news, all while making significant medical decisions all within the same moments, hours, or days.  As hard as this time is, at least we have this time to prepare as best we can for Brent's arrival.
• Faith & Hope.  I don't know if faith has given me hope, or hope has given me faith.  Either way, I believe that although we have some very hard days ahead of us, our best days are ahead of us too.  I have faith that is true, but I also hope that is true.  I have to believe it, and I hold onto that faith and hope.  It's what sustains me through the moments of anxiety and fear.

Many more blessings too count.  I'll count those another time :)

David