Real Life and Esther

These last several weeks have been busy, so not much--okay, anything--has been posted by me. However, this does not mean that life has overwhelmed me to the point where I have not been able to put my nose in the Bible as I've been traipsing off to doctor appointments, hospitals or sitting with my niece. I have. Not only has my nose been in the Bible, it has been in one of the most fascinating books I have ever studied....Esther. A book where the Lord is not seen or mentioned but his hand is all over the events that are happening.

It's tough being a woman, Beth Moore tells me through my ear wigs sitting in the cardiologist’s office, in another woman's shadow. Wow! I am the oldest of four children, two of the younger ones are boys and the third is an only sister. This statement by Mrs. Moore, never really hit home the first couple of times I heard it, but this time something resonated in my soul and it had to do with a conversation my sister and I had several years ago.

I forget how Toni and I came to be talking about our childhood, but we were one day when she told me she always felt it was difficult to live up to what I had done before her. When I asked her what she meant by that her answer was simple; I was the first born, therefore got to do everything well before her. I was an Honor Society Student, she wasn't as interested in learning as she could have been and while her marks moved her from one grade to the next they weren't as good as mine. She became a cheerleader for basketball; I was a cheerleader for basketball--first. She went through a whole list that she had accumulated over the years of things she felt I had done first or better than she had. How difficult it has been for her through the years to live in my shadow.

My long shadow. The shadow that takes care of parents, siblings, nieces. The shadow that steps in when one of them is having trouble and fixes what is wrong and helps it not happen again. The shadow that is able to put a large holiday meal on the table with the same ease as putting a normal weeknight dinner on the table. The shadow that keeps the household on track, takes her mother to appointments and for lab work, worked 3-12 hour shifts a week, directs a Bible study every Tuesday morning, and feeds the leaders of the Bible study Tuesday afternoons, and in my spare time is the nurse in charge of her handicapped daughter when one is unavailable. It never dawned on me what she was attempting, or even wanted; to be was a miniature version of me. It left me asking why anyone would want to be me. 

Beth Moore put this into perspective for me as I sat listening, enthralled by what was being said at this time to the point I was almost unable to take notes. She says this: "Some of our biggest problems in being a woman are other women!" But, in studying Esther, we will learn about our destiny; God cannot fulfill our destiny without us. There are times when God steps in and says this is covenant and I'm going to do it whether you like it or not--Moses being anesthetized and the Lord cutting covenant with him, for example, or the parting of the Red Sea. Then there are times when God is back there working things out and a person must place his or her trust in his providence without seeing a miracle.

I now look forward to this study and finding ways through it that I can show my sister that she is her own woman. If she were to sit down and really read her Facebook postings from friends, she would see that others walk in her shadow; women she knows, women she works alongside, women whose children are raised and out of the house or at least in college. I cannot tell you how many times I've seen them say to her "I don't know how you do it....working full time with a handicapped child. I don't think I could do what you do every day."

Why study Esther? First and foremost, because it is God's word. But also to model submission and obedience to those around us....those as close as, well, a sister.

One Week

Today marks the one-week anniversary of a new chapter in my life. One week ago mumsydoodles came home from the hospital. Not only did she come home from the hospital, she placed me in charge of her medications and her checkbook in addition to doctor appointments. I feel the weight of this on my shoulders daily.....what if's run through my mind more than I care to recall. What if I don't give her the right medicines at the right time, if I give her a medicine she usually takes with food on an empty stomach. What if the cause of her hospitalization really was her heart, not the high calcium level, and more harm than good came from her refusal to see the cardiology group that goes to the hospital she was in because of a previous bad experience? What if her confusion was caused by hypoxia and she now has a damaged brain? What if I had taken her to the doctor sooner than I did? What if...

I cannot dwell on what might be, or what may happen if...it is a right here, right now world that we live in. A world where what happens to ourselves or our loved ones is not always fair or deserved. A world where we cry out "Why is this happening to me?" or "I can't take this anymore." A world where there are things we will understand when God is ready to reveal them to us, not when we want them revealed. A world where everyone has a story that says I asked for this, for that, or for the other and the answer I received was yes, no, or not right now.

I am in the not right now stage. I want my mother whole again, to be the competent decision maker she was prior to her illness. I haven't gotten what I've asked for yet and I may never have it answered the way I want it to be, but it isn't going to stop me from asking. Psalm 23:4 says: "Even though I walk through the valley of the shadow of death...." Notice it says I walk through, not dwell in. What I am learning is that in our dark valley's, God is not ahead of us, he is beside us leading the way and calming fears.

When I think of it in that manner, I find much peace. Simply knowing a peak is coming and I will come to it as a person who is more reliant on God and what he is able to do is what I am finding comfort in. It's a slow climb, and I am very glad I am not making this journey alone.

My "Friday"

I was touched by two quite memorable Easter sermons at my church. The first was entitle "The Goat Has Left the Building." Our senior pastor spoke in it how Israel, once a year offered sacrificial lambs to cover their sins; one remained blameless and was later eaten by the priests and families, while the other had the sins of the entire nation placed on it and was released into the wilderness (hence our modern phrase scapegoat). The second was "It's Friday......But Sunday's Coming."

'It's Friday" the day of arrest in Gethsemane, of trial and conviction under cloak of darkness, the release of Barrabas, a day of flogging, the Sanhedrin encouraging the crowd to cheer Pilates men on as the flesh of our innocent Savior tore. The carrying of the cross beam to the place of crucifixion, of stumbling and falling along the way, help recruited from the crowd to complete the journey. A day of nails tearing through flesh and bone of hands and feet. The nailing of a sign indicating the fictitious crimes of the most pure man placed on earth, who had merely stated the truth: He was a Savior sent by God to rescue, in the lineage of King David, the King of the Jews. On the eve of Passover, his body taken down, given to the women who surrounded him at the foot of the cross and hastily prepared, placed in a tomb and covered by a stone with a seal before sundown. Guards, on loan from Pilate, in place to prevent removal of the body by his followers.

I was enthralled by this sermon and didn't know at the time that I would  live a similar "Friday" for 137 very long days. Of course, in 2009, there was no flogging or the ceremonial release of a criminal. There was no carrying of the cross beam to the place of crucifixion, nailing of hands and feet, quick burial or guarding of a body. September 19th began as every day off did: I received a phone call from my sister asking if I would like to help wake my niece from her slumber. She opens the door to the bedroom and we hear the struggle for each breath; Toni in person, me over the phone. I quickly told her start a neb and call 911. Over the course of a week, the back story would come out, a relationship would end.

Delanie, a child with Cerebral Palsy, 20 years old and in her senior year of high school who was dependent upon family or other caregivers to meet her every need was put to bed at the end of a tube feeding at the insistence of my sister's now former boyfriend. Doctors apparently did not know what they were talking about when they said she needed to sit up at least 30 minutes after it was finished, she could go to bed right away and nothing would happen he told the sitter that evening of September 18th. The sitter confirmed Delanie needed to stay up with my sister who was working, the boyfriend insisted she be placed in bed. "Friday" has begun.

Delanie would be intubated and placed on a ventilator 3 times within a one week time period. After the third intubation our family decided to allow a tracheostomy placement that would allow easy placement of simple oxygen or to return her to the ventilator if necessary. We decided that since she was in the OR anyway a J-tube (placed in a portion of the bowel) would also be done and she would receive tube feedings through this to eliminate the chance of aspiration. Little did we know when these procedures were completed that she would return two times to the OR, on an emergent basis, and the final surgery would end with the physician telling us "She is going to get much sicker before she starts to get better." My mother and sister did not realize that is doctor speak for "I don't expect her to live through this experience" until a much later time. I remember seeing her swollen body unable to even open her eyes, not even taking up half the bed, the Levophed hanging on her IV pole to maintain her blood pressure and an outpouring of tears on the shoulder of the unit clerk. As a family, we had never had a time when we weren't able to pick her up or snuggle with her in bed, yet the lines and tubes running in and out of her body prevented us from doing just that. "Friday" is in full force, coming at me from all sides, dependent upon my coworkers to care for her, knowing even when I said the words to the surgeon that I wanted to take her home on a Friday that it most likely would not happen.

Three abdominal surgeries a week apart, her bowels so frail she could not withstand another if it would be needed. Retention sutures were in place, the first cough opened the incision. A sacral ulcer debrided chemically with Santyl ointment to the point that bone was showing. Youth was on her side, but not much else. Finally, they were able to remove her from the ventilator and place her on a trach collar--it was a leap of faith, literally. The open abdominal and open sacral wound remained. She was on TPN for nutrition until her tube feeding was at goal rate. The wound care nurse ignoring my pleas for reevaluation of the sacral wound, doctors unable to transfer her to AI DuPont Childrens Hospital 20 minutes up the road because of H1N1/RSV/FLU; they would love to take her, but they were full. Her frail body now 37 pounds, a 20 pound loss she could not afford.  The weight of "Friday" crushing me by this time as I tried to hold it all together for her mother, grandmother, cousins, aunts and uncles.

She was home a total of 5 hours before she returned to the hospital. They were given 2 hours to transfer her to the children's hospital. Greeted by the admitting physician in the emergency room, the first question was "Why did you wait this long to get her here?" My sister launched into the long, painful story and ended with 'I know you can fix her," was met with the honesty of the doctor "I don't know that we can fix this." They requested a meeting with the entire family--a decision was made to make her a DNR should her heart stop no heroic measures would be taken. It's Friday....

Coffee Break and my church family is praying for her, FaceBook friends of my sister and myself are praying for her recovery. I plead her case daily on my knees before the Lord.  Literally, she is covered in prayer around the world. She makes many trips to interventional radiology to look at the granuloma's around the area her tracheostomy sits and measure her for a custom fit flexible trach to pass all of them, to change the dressings to the abdomen and sacrum and reapplication of the wound vac. She lay in a 500-pound Clinitron bed, the contents of the mattress continuously circulating as if she were floating on air. Christmas 2009 found us celebrating the birth of the Savior as we never had before; no gifts were given, simple praise raised that she was still with us making slow progress toward recovery and requests given that it continue. "Friday" was not as intense as it had once been, but for each step forward one or two was still made backward. Hospital staff began working with us on how to care for the 'new' Delanie because Sunday was coming they said.

"Sunday's Coming" the other half of that heart touching sermon. The women returned to the tomb, ready to anoint and properly wrap the body of their Savior, giving him the burial he deserved only to find it deserted. "Sunday's Coming" Toni and I must learn to change trachs and what to do if we are unable to replace it. "Sunday's coming" meant Toni had to stay overnight at what was now considered our second home to prove she could take care of her now 70-pound daughter before they would release her home. "Sunday's Coming" meant meeting with the entire treatment team at the hospital, a room filled to capacity with doctors, nurses, case workers, social workers, family and Delanie to make sure everything is in place on the home front for her return. It meant then, and means now, that when called by nursing staff in the middle of the night and told something is wrong assessment skills need to be second nature to determine the need for an ER visit or if it is something that can be done as a sick visit to her primary care doc. "Sunday's Coming" meant meeting with the transition team as she would be aging out of this hospital since she would be considered an adult on her 21st birthday. "Sunday's Coming" meant my sister doing skills repeatedly, skills I took for granted as an RN. "Sunday's Coming" tears shed in gratitude of answered prayers, for all the staff had done to heal her, and watching my sister--really for the first time--learn to become Delanie's advocate, not to simply settle for what was being told to her.

Sunday has meant replacing a nurse in the middle of a blizzard because she was drunk, replacing a nurse who slept on the job 7 days a week and I was not able to awaken one morning and another who entered the home with her own agenda each shift she worked, listened to nothing told to her and admittedly ordering our neighbor to plow her car out after a snow storm, meticulously planning outings around times for medications and remembering which equipment can be left home and which must go with us. It has also meant 18 months of growth and ever more dependence on Christ than before.

Some of you reading this may be in the middle of a "Friday" wondering if it will end, place your trust in the everlasting God--"Sunday's Coming!"

A New Baseline

The month of March was interesting at my home. You would need a little background to completely understand that statement. My home is one where people come and go all hours of the day and night. It is a home that is lived in, a home where there is a dining room table that comfortably seats 6 and we consistently sit 11 around it, a home filled with love and laughter. It is home to my mother, my sister, my niece who receives 16 hours of nursing care a day, and myself.

Due to the complexity of my niece's care, it is not unusual for her to make frequent trips to the local Emergency Room once or twice a month. She has a tracheostomy, a PEG-tube and a J-tube. March was one of those months.

On my mom's birthday, we all became ill. Delanie was at the ER the following Monday and sent home, mom on Wednesday and sent home with Acute Bronchitis. Delanie goes back to the ER Friday and is hospitalized at Johns Hopkins. The next week, still sick, mom and I traipse to our family doctor. I get antibiotics for what is going on with me and mom is told the antibiotics she just completed are going to last until the end of the week. The following day, Delanie returns home and has five tenuous hours of either nursing or family at the bedside suctioning almost continuously. Later that night into Friday morning, mom begins vomiting, has difficulty breathing and a blood pressure of 300/100.

Mumsydoodles was admitted to the IMC/ICU at our local hospital on a nitroglycerin infusion. Then she became confused, wandered to the 4th floor and argued with the staff about going back to her room. Mumsy over the course of the weekend told the hospital staff they were poisoning her, climbed into bed with her roommate, ignored her ringing telephone, forgot one brother had visited and brought pj's and dentures, remembered the youngest brother had visited with his wife and brought her CPAP machine and glasses, but never called them by name. In a whisper-yell I would talk to the doctor and try to make sense of all that was happening. My totally oriented mother now appeared to be going down the path toward dementia. I knew this meant my life would never be the same.

I visited Monday--having been previously banned due to lack of a voice--and the first words she said to me was 'You are not going to leave here without me." My response was, "We'll see." Our visit, already off to a rocky start, consisted of her telling me the hospital was taking her insurance numbers and billing them for her roommate, the staff was poisoning her, she would not eat lunch, but never questioned the medication the nurses were bringing to her. The longer I was with her, the more she seemed to come around to her normal self. In fact, at 4 p.m., she kicked me out so that I could take the puppy to obedience school.

Tuesday, I enter the room and find her sitting in a straight backed chair. The first words from her mouth were that after I left the prior day she began thinking and realized she really did do all of the things they said she did and she was coming home if her CT was okay. I wasn't sure whether I should believe what she was telling me or if she was making it all up. When the doctor came in, she confirmed the discharge and the reason was mumsy was refusing cardiology input; I explained the reasons behind this which did not seem to impress the doc at all. So at 6:30 p.m., we head home, prescriptions in hand for two antibiotics to treat the diverticulitis seen on the CT and one called to the pharmacy by the physician for her blood pressure.

Since then there have been ups and downs. I find it difficult at times to decide if the confusion is there or if she is alert and oriented. Today we picked up her taxes and I signed them for her since she seemed much more confused than yesterday. She walked around Walmart very slowly, unable to remember where some things were that we always buy (for instance meat) or even the fruits and vegetables which were right in front of us. It takes longer when you are elderly to recover from an illness, to rebuild your stamina and medications play a role in this. I cannot help but wonder if the confusion has been caused by her brain not receiving enough oxygen to it. There is nothing that can fix that.....it's a new baseline, a new way of telling me to rely on God to get me through what is happening rather than man.