live and love as best we can...

This morning we had our big appointment with Courtney's Family Practice Doc. We went over everything that has happened in the last month and he also gave her a thorough physical exam. During her exam he found other issues that have furthered complicated her case. The issues he discovered would possibly require surgery and at this point the Doc feels Miss Courtney is at too high a risk for cardiac arrest or infection if we were to do that. We talked very openly and honestly about her health and what the near future will look like. 

He was incredibly empathetic and at several points emotional. He has cared for our girl for some time now and has always been very kind.  

He agreed with the hospital physicians and will facilitate our sit down with Hospice to see what can be done, to help make the next six to nine months or so comfortable for Courtney. Yes, you read that right. Six to nine months. That's the time frame he gave us. Her body is breaking down slowly and each system is showing distress. The fact is that the latest EEG shows she pretty much seizes 24 hours a day even if we don't see signs "on the outside". As Jerry said "There are about seven things that could do her in and they all seem to be in a race to the finish line" --That's an excellent way to describe it. 

The plan is to meet with hospice sometime late next week after we have had a chance to gather all the paper work from all her specialists as well as the legal documents we now need to generate an advanced directive. Other than that we will continue going about our daily life letting Miss Courtney tell us when it's a good day or bad. Jerry and I will continue to participate in our Marriage Mentor Ministry as well as members of the Core Team for Youth Ministry at our parish. When it is time to step away from those ministries to be with our girl, then we will.  We have the support of our families and our parish community to do what we can, as we are able. 

Right now we want to take every opportunity to create memories with our daughter while we can. I am not sure what that looks like yet, but I know we will figure it out as we go along. 

I do have one request for you though, my sweet friends. Please do not say you're "sorry" anymore. There is not one thing to be "sorry" about. Courtney is fervently abiding in God's plan for her life as are we. She has worked hard and suffered much to bring hope to those who look at people with disabilities as "less than". My Courtney shows people that no matter what you're abilities, each of us deserves respect and unconditional love and acceptance. 

When God calls our girl home, my heart will splinter into pieces that will never be put back right again. 

Yes, I will be inconsolable. 

Yes, there will be some very dark days. 


My Courtney is going straight into the arms of her Beloved Lord. She has long waited for this day. She will be a saint among many. She will be an incredible intercessor in the heavens and continue to help us here. She will be free to run and dance at the throne of Our God. There is nothing to be sorry about.

We have done EVERYTHING in our power to care for our little girl in the best way we could. We have no regrets with any of our choices, even the ones that didn't go our way.We prayerfully considered them all and did what we thought was right. We have been told more than once in the past month that the only reason Courtney is still here is because "we have loved her here". We are honored to be her parents and humbled that God chose us for her and her for us. We are who we are today because this child introduced us to God in an incredibly special way. 

God breathed life into my Courtney. He alone allowed things to unfold as they have. He will call her to Him when her job here is done and not one moment before. Until then, we will live and love our girl with all we have. One day at a time. 

For those of you who are local here in NoVA, next week St. Mary of Sorrows in Fairfax will be having their 40 hours devotion in honor of Our Lady's feast day on the 15th. It was suggested to us that we offer one of the hours for our intentions/Courtney. We selected Friday evening, Sep. 12, from 9-10 pm. We will be there with Courtney and I am inviting all of you to join us in prayer at St. Mary's. 

Please invite your friends, bring your family and join us. It's a win-win situation, our Lord will not be outdone in generosity. If you can't make it, perhaps you can offer a holy hour at another time during the 40 hours. 

As always we are leaving room for a miracle!

Thank you! You all are the best!

To God be the Glory, now and forever.

**way's to help with Courtney's medical costs/daily care expenses**

We Love the Lenaburgs - Team Courtney Fundraiser