The Journey

Our Creator is a powerful God. He is a magnificent engineer and a wondereful architect. Giving life to our precious jewels, He entrusted us with a great task and responsibility--that of being His partner in nurturing our children (who are first and foremost, His chidren) with love, care and attention. This is a story about a mother and daughter's journey-- hand in hand-- together.
I am a 39-year-old Mom of a 16-year-old Lupie. My daughter, Samantha Johanna ("Sam", but for some it's "Hannah") was diagnosed as having SLE (Systemic Lupus Erythematosus) last May 2004, she was only 13 then. She has stopped from school for almost three years now. A consistent honor student, she is supposed to graduate from High School this month but she has dropped out from school when she was in her Third year High. She is prohibited to go out especially during daytime while the sun is out (or even when it is raining), as the UV rays might trigger a lupus flare. She is not allowed to be exposed to people, for she might catch cough, colds, infections too easily. She is homebound. She underwent monthly chemotherapy, Cyclophosphamide-Pulse, she's on Steroids and plenty of oral medications and laboratory tests. Lupus (Spanish term for "wolf") is an auto-immune disease which has no known cause and an unknown cure, but it can be controlled. It can be fatal because it can affect the different vital organs. Lupus cells activate automatically even without infection to arrest and to fight with, thus, destroying the "good cells" of our body. Sam's kidneys were both affected. It was indeed a great Miracle how she managed to survive even without dialysis. Last October 2005, May 2006 and November 2006 her blood elements particularly her platelets were destroyed by lupus activity, requiring her to be confined in the hospital for nearly four weeks, undergoing blood transfusions. Her platelet count was 1. The normal platelet count ranges from 150 to 400. Platelets protect us from bleeding. Low platelet count could trigger bleeding ( even internally). We prayed that her vital organs especially the brain would be shielded and protected from bleeding. However, there were symptoms of bleeding in her eyes, mouth, chest and limbs. There were hematoma, peeteekaie, hematuria. Her urine was sometimes color black like a cola soda, sometimes, color red (like "gulaman palamig") and sometimes color "iced tea". She was not allowed to get out of her bed, even losing her bathroom priveleges. all activities were assisted, including changing of clothes, eating, answering the call of nature in bed, as she must not exert any effort, to prevent trauma and bleeding. She was not allowed to brush her teeth even while in bed, because the bristles of the toothbrush might trigger bleeding of the gums. She just gargled with "Bactidol" very often.
To guard her platelets from lupus cells and their activity, she was given I.V.I.G. Gammagard (Immunoglobulin Intravenous), 5 vials last October 2005 and 5 vials last May 2006. Each I.V.I.G. vial costs PhP40,000.00. There was no effect the second time I.V.I.G. was given (last May 2006), so the doctors required a more aggressive drug, Rituximab (in the U.S. it's called Rituxan) which costs Php 90,000.00 per vial. She was given one vial last May 2006 and another vial last November 2006. Studies and testimonials from Lupies proved that completing the four (4) doses ( one vial each week for one month) tamed lupus and Lupus patients were freed from flares. Doctors require that Sam be administered with the complete dose the soonest possible time, that means four vials of Rituximab which now costs Php 111,000.00 per vial. Where in the world would I get that amount? You see, we lost all our properties including our car, our home appliances and even my wedding ring just to purchase the medicines that would help save my daughter's life, even leaving us in deep debts and owing huge amount from relatives, friends and brothers and sisters in the prayer community. I sought help and medical assistance from PCSO, PAGCOR, Malacañang (offices of the Pres. and First Gentleman), from politicians, several foundations and some religious groups, but to no avail. I even wrote to Ms. Mel Tiangco and some U.P. Samaskom orgmates who are now making it good at ABS-CBN, but to no avail. My husband's high school batch at Paco Catholic School had a fund raising, but it will not suffice, the amount raised was not even enough to purchase one vial of Rituximab. But we are very thankful for PCS Batch '81, may the Good Lord reward their generous hearts abundantly.
I am presently out of work and a stay-at-home Mom, personally taking care of Sam especially her oral medications and meals as she is on a low-salt, low-protein diet. Pa-extra-extra lang ang husband ko sa mga computer shops (as a computer technician). My elder son is a second year college student at UST.
My daughter's great Faith in God lifts me up each time I fall. The sudden demise of my Dad because of stroke in 2003 and my Mom because of heart failure last year, April 2006 hit me to my lowest. It is my daughter's and my constant trust in God that kept me going in traversing this journey. Those traumatic experiences in the hospital, frequent confinements, financial difficulty, lupus flares, agonizing moments of asking God to extend my daughter's life and to save and deliver her from lupus really broke me into pieces. During those times, I know that Sam cannot draw strength from her physical body because of her health condition, instead she was drawing her strength from her emotion and spirituality. Not until some more chaos strike. In June 2004, Sam accidentally discovered some love letters as she was going to use a plastic folder which her Dad brought home from his office. The office stuffs were stored in a room beside our garage ( a room which was used by my departed Dad as a small "Tindahan" while he was still alive). My ailing daughter was completely surprised as she wept "Ang wawalanghiya nila, Mommy!"and we all got a great shock. My son who was in teary eyes cried out, "Bakit ba nangyayari sa atin ito?" My mother (who was still alive then) tried to console me by saying, "Baka naman may naglagay lang niyan sa gamit niya, baka naiinggit o galit sa kanya." However, I knew in my heart and in my mind then, that this was the answer I was searching for. Some years back, for several times, I found out a phone number on my husband's cellfone bills and on my brother-in-law's landline phone bills ( as we are using provincial line- long distance to Metro Manila). I asked some friends from PLDT (at first they were hesitant) to help me find out the details of that number and voila, I got the subscriber's name and address. It was my husband's female officemate.God called us to join a Marriage Encounter Group. I thought all my strong intuitions would subside, but my peculiar feeling and his peculiar behavior continued. When my Dad passed away, I asked for his help. I was alone, weeping in front of his ash urn, asking him to help me by unveiling the mystery, by revealing the truth. True enough, after a few days, Sam (his closest grandchild) discovered the love letters. My husband and I were counseled by a couple-friend. A day after, I asked him to cut any communication line with the "woman", he shouted, "It's impossible because this woman is also my business partner!" I was astonished! All of a sudden, all our dreams were shattered. The retirement pay that my children and I were waiting for so we could start setting up a small family business is gone!
My husband availed of an early retirement a few days before Sam was diagnosed, thus, we lost all our group hospitalization benefits and medical priveleges as his dependents. Without our (his family's) knowledge, he and his three female fellow PLDT employees put up a salon franchise and it was inaugurated last December 2003. He borrowed money from a lending company and he invested it in. Then altogether, they resigned from the company. When he got his retirement pay, he paid his balance to the lending company and the huge amount of interest. I told him as he confessed about "their" business, Anything that was conceived and materialiazed because of a grave sin-(Chronic Lying ) is not the Will of God. Things will get back on you. He said, "Pabayaan mo ako sa diskarte ko. Wala kang alam sa negosyo." All the while, I thought he would use the "Diskarte nating pamilya at ni Lord" principle. If he is in a good "company" of "friends", he would grow as a better person. He would become more loving to his family, more responsible, more patient and more joyful. But he became the exact opposite of all these good qualities. Many times, he would turn down Sam's requests to accompany us and drive us to her doctor as she wasn't feeling well. Whenever I call him or text him, he would decline our call and turn off his cellfone. Then upon reaching home, he would scold us all, "Istorbo kayo, may kausap ako kanina sa parlor na electrician!" Sam would just cry and whisper, "Dad, kasalanan ko ba kung hindi mabuti ang pakiramdam ko kanina?" Then he would walk out. For several times, the same incident took place. To make it worse, one of his business partners would text me, "Emergency ba talaga yan? "Di na naniniwala sa 'yo asawa mo, gasgas na 'yang word na emergency sa 'yo. Pasalamat ka si L---- napangasawa mo, kung hindi matagal ka nang hiniwalayan. Don't pretend that you're a good wife and mother to your children." I would just tell myself, this is one obvious and concrete manifestation why that woman who sends text messages and who is my husband's "friend" and business partner is separated and is now a single mom. It even entered my mind to congratulate her estranged husband for making a wise decision of leaving her, but still some "goodness" in me prevailed. My children has the sole right to primarily evaluate me (not even judge me as God has the only right to judge) on how I perform my duties and responsibilities as their mother... I believe that true friendship requires honesty and great respect for your friend's loved ones and family. Business partners have to observe a certain boundary and limitation when it comes to their "partner's" marriage and family life. My kids experienced a fatherless Christmas when my husband left us on December 7, 2004 as he chose to continue with his "business relationship" with these three women even if that would mean losing the three of us, his family. In 2005, he returned home. The saddest part was when my ailing daughter asked me, "Ma, bakit nandito 'yan (referring to her father)? Di mabuti pakiramdam ko pag nandito 'yan." As her father continued to go to the parlor everyday, turning her requests of accompanying us to the hospital down, once she told me, "Akala ko ako lang ang "Baby" ni Dad...Sometimes I ask Jesus to just take my life back so that Dad would wake up and open his eyes." My heart was torn into pieces. I consoled her by saying, "Anak, huwag kang magsalita nang ganyan." I was numb. Pakiramdam ko, tumigil na sa pag-ikot ang mundo. I felt my daughter's pain, my agony as a mother and the wounds of a wife's broken heart. I cannot obliterate that scene from the innermost recess of my thoughts. Try as i would but the agony in my heart is seemingly endless.
Both husband and wife has a conjugal right to the money earned during their marriage. Friends were telling me to file a case against the "connivance" and conspiracy of liars and that my marriage contract has power. High School and College Batchmates who are now lawyers even offered their services for free. They wanted me to file a "concubinage" case against my husband and his "friend". PLDT friends would reveal to me stories of how "close" these two individuals were in the office. As Kumares, kumpares from PLDT would come to visit us in the hospital and to donate some blood, they can't help but comment, "Sabi ko na nga ba..." as I mention about the "love letters". One cousin of mine even volunteered to personally hand in the Court Order to the "woman friend" and somehow, black mail her by asking for the amount of money that Sam needs for her medication, in exchange of not telling the "woman's" present husband about the "concubinage case". Most of my male relatives and friends suggested that I must file an annullment and leave my husband behind. Most of my female relatives and friends recommended that I send copies of the "love letters" to the husband and to the "in-laws" of the woman. My husband kept on saying that there was no sex involve. Whether there is sexual relationship or not, an affair is still an affair. Spiritual advisers told me that Emotional adultery is a mortal sin and thus, requires repentance and penance. I turned these all down. I didn't want my children to be bothered by the court hearings and procedures, I want to spare them from more pain. I just want to put an end to all of these, period. I believe that God is a God of truth and of justice. In due time, these people will get their own shares of "reaping what they sow".
I know that God will reveal to the husband and to the in-laws the truth, in His own appointed time. My primary concern is my daughter's healing and my children's recovery from all the deep emotional hurts that they have experienced.
In October of 2005, a couple visited us in the hospital. They have lost their 17-year-old daughter because of lupus. the husband talked to my husband in private, requesting him to surrender "everything that is not from God" and anything that would hurt Sam. He, in turn, promised to quit from the "business" even without getting back the money that he invested in.
At this point of my life and my daughter's life, I am not saying that we are completely healed from the emotional wounds that we have experienced. Through God's grace, we are in the process of healing and picking up the broken pieces once again. Every trial is an opportunity for God to perform His Miracles. We have experienced the wonder of His Miracles for so many difficult times. It was during those tough times that we held into His Hands much, much tighter . As we sailed roughly, we realized how precious life is, how valuable every second that God has given us, how important each moment that we share with our loved ones. Let's not just get busy in finding ways to earn a living, let's also find ways how to make life.
We are ready to face the sun again and enjoy its light as it shines in our family life.
In my heart and mind, I have these greatest dreams: to be able to give Sam the complete dosage of Rituximab, to help her go back to her normal activities and to continue serving God hand in hand with my family. How? I don't know how, but in my heart I have all the answers... I believe in God, in His Great Love for us. His plan for us is for our good. I know that HE will touch the hearts of sincere people whom HE would use as His instruments in performing another Great Miracle in Sam's life. In Jesus' Sweet Name, these dreams will come true.