little miss sunshine update...every day is a gift...

So we have been home for a day or two now and the reality of our daughters frailty is front and center. Courtney is strong with the force my friends and her tenacity is legendary. But...her body is tired and that is quite obvious with our latest little trip to the ER and subsequent inpatient status

So what now? How do we go forward from here? Well the doctors have been quite direct about the future, as you know, but this Mama and Papa have walked this path for almost 22 years now and we don't take one moment for granted. It's a lesson learned the hard way over the years. Each day is a gift and we live it baby. We live it BIG!!

Our Sunshine girl is happy to be home. This Mama and Papa are happy to have her home. According to medical science she should not be home. Instead of planning a birthday celebration this weekend, we should be planning another type of celebration. To type that is hard, harder than I thought it would be. I know the day is coming when I will lay my beautiful girl in Our Lord's capable hands, until then, there will probably be more Thursday night dives to deal with. There will be more procedures undergone to help deal with the symptoms as they occur. We want her to be comfortable and know she is loved always and forever.

We have gotten a few questions about the DNI/DNR we signed in the ER. I don't mind answering questions at all, no matter what they are. If it helps someone who may have to face the same situation, then ask away. First of all, it was done after all other medical interventions were taken and her blood pressure was still tanking. Jerry and I have talked for years about this moment in time. When you have a child like Courtney, talking about death cannot be avoided. 

We knew we didn't want any one cracking her chest, shocking her heart or whatever else is done when someone is dying. My Courtney has fought hard and for a very long time. If it is time for her to go home to God, then I want it to be a moment of peace if possible. I want the dignity of her life honored and respected. 

Once that paper was signed, there was such a sense of peace for us, even as she was not immediately improving. The most disconcerting part of it was the medical team just standing there watching her. I know it was required but it was extremely uncomfortable for me. Not that any of this is easy. Anyway, it took over two hours fr her blood pressure to make it's way back into the lower echelon of "normal" for Miss Courtney. At that point they moved her out of the ER onto the floor and we waited. 

Because of staffing issues, they moved her to the transplant floor. A first for us. I think it's because they had a full nursing staff and all the rooms are fitted to handle any "end of life" issues, that may occur. The nurses were the VERY BEST we have ever had. EVER! They were gentle and calm, kind and extremely caring of my girl. 

By Friday lunch time, we rescinded the DNI/DNR and have decided instead of having a permanent one in place we will decide at the time of each crisis what God wants us to do. Both our Neuro team and our Physical medicine team are on board with this. If there is something medical we can do to help her, we want to do it. If everything has been done to save her life but intubating her or shocking/cracking her chest, then we will prayerfully consider the DNI/DNR once more. We may change our minds towards putting something more permanent in place as we go along, but for now that's what we are comfortable with. 

The Peds team on the floor was also absolutely fabulous as well. They listened, gave advice, and didn't judge. They were phenomenal. Once Courtney was stable, the "teaching" side of Georgetown University Hospital came into full swing. It was quite fascinating actually. On Friday, mid-morning, while we were waiting to see if the neurosurgeon had room in his schedule to replace her VNS, the Staff Physician, Dr. O, came by and asked if he could bring his 4th year medical students in to talk to me about Courtney and our journey. I said sure and what commenced was the Holy Spirit in action. 

There were eight students, seven women and one gentlemen, one resident and the Staff Physician/Professor. Courtney was sound asleep in her bed and I was laying next to her. We have to keep the bed at 30 degrees to prevent aspiration, so we were sort of lounging together. The lead Doc asked me to give Courtney's medical history. In five minutes I summed up all we have come through. Dr. O laughed and informed his students that I was an unusual Mom which is why he wanted them to talk to me. I was on top of her medical situation, had recently signed a DNI/DNR and could talk about the "what" and "why's" without emotion. 

HA!! Little did he know that I felt like throwing up and wanted to cry buckets, but was pleading with the Holy Spirit to keep me calm and allow God's word to come through. I recognized this moment as a possible life/mind/heart changer for some of these young whipper snappers so I needed to remain calm and focused on the work at hand. 

After a little back and forth between him and the students explaining all the medical procedures that have been done on Miss Courtney, we opened the floor to questions. Oh the questions I got. Medical questions, family questions and psychological questions. Questions about faith, freedom of choice/assisted suicide and day in/day out care of our sweet girl. This little impromptu class took over 90 minutes and it was fascinating. There was laughter, tears and even a few "I'm sorry's" which I asked them not to say. 

I explained that saying "I am sorry" to me about what was happening wasn't necessary. There is nothing for anyone to be sorry about. Miss Courtney belongs to God, always has, always will. Jerry and I just get to borrow her for a little while. She is a living saint and part of her job is to be a witness to the faithfulness of Our Lord who is always be by our side. He has been right here with us from the very first moments of her life in the womb.

Once the little "class" was done, the students continued on rounds. Dr. O came by later and hugged me, thanking me for my time and "witness to the dignity of life". His words, not mine. He had tears in his eyes and he sat and held Courtney's hand for a few moments, bowed his head and prayed. 

Throughout the afternoon, several of the students came back to ask more detailed questions or to just sit with Miss Courtney and chat a bit. It was an amazing thing to witness, my daughter doing the work God has sent her here to do. To give witness to the dignity of life and the power of a family's love to follow the path God has placed before them, no matter what the cost or the difficulty. 

You see my sweet friends, this is what Miss Courtney does. She affects a change of heart in regards to the idea of what "suffering" looks like. She touches people deeply, challenges  their views on the disabled and helps people "see" that there is a person present wether that individual can see, or speak or walk. There is an someone present who deserves just as much love and care as an able bodied child. 

As Jerry and I were sitting in Mass this morning, listening to Gospel of Matthew, telling the story of Peter getting out of the boat and walking toward God, in the midst of the storm, I smiled. This is everyday life for a family with a medically fragile, disabled or a chronically ill family member. We are asked every single day to get out of the boat, keeping our eyes on Christ and walking the path He sets before us. All while the storm continues to rage on all around us.

Before you think that we are saints, be assured that our daily struggle to deny our own selfishness and comfort, is as real as anyone else's. Jerry and I are no different than anyone reading this post. We are human and just doing the best we can. Some days we do OK, others we fail miserably. Oh the joy of humanity. 

There is so much in our world today that distracts me. There are wars on several continents and persecution of unspeakable proportions happening everyday. What can I do about it? How can I assist these beautiful souls so far away?

I can pray. I can offer up my daily chores of stinky adult diapers, changing wet bed sheets, laundry load after laundry load, blenderized meal after blenderized meal, doctors appointment, emergency room visits, surgeries, worries about money and physical exhaustion. This is what I can do. I can live out my prayers with those beautiful people on my mind and heart while I love the young woman the Good Lord blessed me to care for 22 years ago. 

So there you have it. 

Today I got to be at Mass, thanking my Heavenly Father for the gifts of my life and my families. I got to sing to my daughter during snuggle time. I got to eat a lemon glazed donut brought to Virginia all the way from NC. It was simply divine. I got to cook for my hubby and enjoy a quiet Sunday afternoon watching old movies while knitting. I am very grateful for my life, for my daughter, for my beloved husband and courageous son. 

Tomorrow morning at 10:30 a.m. we will be meeting with the Neurosurgeon to decide if/when we replace her VNS device. The "if" exists because we don't know how much battery power she has left. So based on that information we will make our decision and schedule surgery if needed. 

Yet another moment to get out of that boat and walk toward Our Lord pushing our sweet little girl along the way. Your prayers would be greatly appreciated.

Also, it's not too late to send Miss Courtney some "Happy Birthday" art for the party on Saturday, August 16. See the details here and email me for the address. 

It's going to be a blast. No sadness allowed...only JOY! Our girl has earned every single drop of joy and happiness that we can squeeze out of the past 22 years, and squeeze away we will. There may even be a breakout of some serious dance never know with this crowd. LOL! 

Joy and sunshine!! It's gonna be awesomesauce!!

Blessings one and all, 

If you are able to help with Courtney's adaptive equipment, hospital expenses, therapy co-pays or daily living costs, we thank you from the bottom of our hearts.