So another poster that I follow on my other blog wrote these two entries today. With all the talk on redemptive suffering, I secured her permission to re-post this here. I couldn't help but be moved by this woman's strong witness to the Faith, and to the value of redemptive suffering. Please keep this family in your prayers?
So we know that Ben's kidney and bladder failed last year for some (rejection?) unexplicable reason and that the best doctors in the world were not able to do anything. We also know that during the rejection event Ben's immune system was sensitized to all human antibodies, which makes retransplant extremely difficult. So the medical establishment has been in a quandry of what to fix first. They had a first and second plan which we rejected, because too much hinged on either modern technology or God's will, that of course depends on how you view things. And the end result might have been that Ben would end up with a permanent, unpleasant reconstructive surgery but no transplant. So we said, "No. Go back and try again." This is the final plan.
First, Mark (dad) is going through testing as the donor. Assuming that all of that works well, we proceed after Easter to Step 2. Step 2 involves, Ben going in for Plasmapheresis daily for a week. In this process, all of Ben's antibodies will be removed from his blood stream, in order to prepare him for a second transplant. If the plasmapheresis removes the antibodies that would start a transplant rejection, then we move to Step 3. If plasmapheresis can not remove the rejection antibodies, then there will be no transplant and Ben presumably remains a dialysis patient for the rest of his life at the age of almost 9.
Step 3 involves Ben going in to have a Bladder Augmentation to fix the failed Bladder. They will take part of his small intestine and turn it into a new Bladder. This will alter some things for him permanently and he doesn't like this idea. 3 weeks later we attempt to retransplant with Dad's kidney.
This time around, Ben would be very immunosuppressed and everything will be different. It is also not likely that the kidney would last more than 5-10 years. And once the second transplant fails it becomes even more difficult to do it again, if not impossible with current technology.
Because of both the bladder failure and the immune system being overly sensitized, it is very unlikely that we could persue a cadaveric organ. That is a relief to me, because I had end of life moral qualms with the idea of cadaveric organ donation and I had firmly refused to place Ben on the "list". Mark is just terribly confused on what the Church does and does not teach over the issue, so he has yet to come to a firm conclusion on the issue. But I am pretty certain that a cadaveric organ is out of our reach, just purely based on the circumstances.
The reality is that a second transplant is a long shot. We have reached the end of modern day technology. I accept whatever God's Will may be regarding my son, and I think that he does within his own mental capacities. I firmly, believe that Redemptive Suffering has value, purpose and meaning. I know that for some of our family and friends, this past year has caused a Crisis of Faith. All I can say, is that it has not for me. When we choose to persue medical treatment and to keep Ben alive 8 1/2 years ago, I was well aware that it would only be good for so long. We have never buried our heads in the sand about what a Chronic Health Condition really means. So I am hoping that no one else is burying their head in the sand and believing that Ben will get this transplant and everything will go back to the way it was before. That is very unlikely. I want to say it again, so that everyone hears the same thing-it is almost impossible, even if Ben gets a second transplant that things will go back to the way they were. We can presume that life might generally be better with a transplant than on dialysis but sometimes that is not the case. Sometimes so many complications occur that life with a transplant is worse. It is very possible that with the higher levels of immunosuppression,and all the extra side effects, that things could be worse. So Mark and I have to make prudent decisions based in reality not emotional hopefulness.
Faith is an Act of the Will, even when things are unpleasant. We don't like things as they stand. We are praying for a miracle (and for those who understand what this means, we are asking for Intercession through Venerable Antionetta Meo, a little girl who died from Bone Cancer and suffered tremendously but never doubted the value of Redemptive Suffering). But we accept the course of events as part of God's Plan. Because we are rasing our Children with Faith as the Center of their lives, they are able to accept God's Plan. Eventually, they will question things and have doubts; but I will not allow anyone to prematurely put doubts into their heads.
I am sending a copy of this Note to everyone we know via Multiply, email, or snail mail, in order that no one can feel singled out. But I just want things to be very clear. People can question our faith, our homeschooling, our refusal to Contracept now or Ever for religious reasons, our isolation from mainstream America, the fact that most of the time the girls and I are dress only in long skirts or dresses, etc. But I do not want anyone to question why God is doing this to Ben in front of the kids. Tears will not help Ben cope with life, they will only give him license to feel sorry for himself. Self -absorption will not help him get to Heaven or to be happy here on Earth. Ben does not at the moment feel sorry for himself, because we don't allow him to feel sorry for himself. I am off of my soapbox now, but I would like everyone to be very clear about what I will not Let happen. No tears in front of the kids or Ben, no sappiness, no "Why is God doing this?" And no blanket unrealistic statments, about how everything can only get better, etc. I am completely aware that Ben will question spiritual things as he grows up, but I prefer that he go through that spiritual process on his own time and not be dragged through someone elses Spiritual Crisis, now.
I know that people find it tacky, or inpersonal that I send out en masse emails about Ben or reply to their phone calls, or emails, gifts, by blogs or emails; but my time is limited and I can only do it this way or not at all. Please don't anyone be offended, I wanted everyone to hear the same thing at the same time.
Thank you for your prayers. Thank you for reading through this and respecting our wishes. For all of those who have cooked for us, cleaned for us, schooled the kids for us, prayed for us, sent us gifts and thngs, and cards and Masses. Thank you. I know that Graces have been raining down on us from Heaven this past year.
And this is Post 2 -
I think it is easier for me to accept the logical finality of our Belief, only because Ben's situation allows for only three responses as a parent..
-Total acceptance of God's Will and acceptance of the fact that I will probably outlive him.
-Total denial of reality and standard escape mechanisms.
-Total depression and a heavy reliance on pysche drugs because you see reality but refuse to accept it.
Essentially, every transplant parent that I have met clearly falls into one of these 3 categories. Most of them will tell you what drugs they are on in the first or second conversation. For various reasons, God made things so clear to me within the first 6 weeks post transplant that I was forced to accept reality. About 8 months post transplant, I fell into a deep, deep depression. It took me about 2 years to come out of that depression. I moved here in a state of relative neurosis. I woke up somewhere between Tegan and Keara and accepted life as I knew it would be. Unfortunately, I was alone in walking that walk because my husband and 4 grandparents buried their heads in the ground in a deep state of denial. The response was a very emotional, and very normal reaction by them of near panic everytime something didn't go right. I attempted to start conversations with all of them pondering the future for Ben and they all reacted pretty strongly. I was being negative, I needed to be more of an optimist, medicine was advancing all the time, stop worrying. I wasn't worrying, I was just pointing out the obvious that "transplantation is not a cure, it is only a treatment and treatments don't work forever." I gave up trying to break through their denial when I had a really unpleasant argument about Ben's future. I pointed out that it would not be prudent, responsible or selfless for him to get married and have children. All things considered, even if a second transplant goes perfectly, it is unrealistic that he will live to 50. The side effects from the meds will probably cause damage by the time he is 30ish. Would it really be responsible for someone who knows that they have tens of thousands of dollars in medical bills from day one, to get married and have kids? The temptation to contracept would be insanely strong. The constant fear of money, bills and the future would be huge. Could all that be overcome? Sure, but we can't go around and pretend that Ben can just get married and have kids like everybody else and we need to start preparing him for that kind of sacrifice now, assuming he lives to adulthood. The reaction that I received was so unpleasant as to be nearly violent. So I have waited patiently for many people to wake up. Some have but most have not and now it is too late for us to wait patiently. Ben is old enough to start thinking and pondering and to be very cognizant in a way of the logical conclusions of peoples' words. He may struggle with math and memorizing Latin or catechism but he can find the logical conclusion to adults thoughtless words. He has asked, did they really mean that because that really means....? I can't allow anyone to thoughtlessly make comments about faith, or the Church, or his life anywhere near him now. He would immediately discern what they are saying, probably more than the sayer would....
He has already figured out that, " I just can't believe a good God would allow a child to suffer like that" means an outright denial of God in Ben's name....and he has already wondered why people cry over him but they don't cry over the kids dying in Haiti. With the innocence of childhood, he can see our selfish, illogic and I am very afraid that the misplaced compassion of relatives and family friends will seed venom of self-absorption and disbelief and for Ben who may very well not survive childhood-can't go through the disbelief of the teenage years because he might not have time to repent of it as an adult. When you have no less than 3 different priests tell you they don't think your son is long for this world and that they have been praying about it...you need to wake up and face reality.
In the past 3 weeks, I have had too many irritating comments from people-again no one who reads this-about how sad this all is, about doubting God, about how the Bible isn't all true, about how we need to be more compassionate and sensitive to Ben's needs....All of the comments, by the various people were sincerely meant but not one of the individuals thought or took their comment to its' complete, logical conclusion....
How sad all this-implies that Ben somehow means more than somebody else who is sick or suffering and therefore deserves to be healed.... or that God doesn't really know what he is doing or that God must not have any direct control in this world
Doubting God-is just prideful aethism....refusing to submit your will to God's will....then why do you go to Church at all or ask him for a miracle?
The Bible isn't all true is just a cop out for someone who doesn't want to suffer the cross that they were given, so they latch on to some piddly thing and use it as a cop out. I ask then why go to church if the Bible isn't all true?
We are being sensitive enough-Really who do you think you are to make that kind of statement....It wasn't made directly, the individual didn't know that I heard about it. Did God give you the graces to raise our son from outside our home?
Mark doesn't see what I am upset about but then Mark isn't hearing the questions that Ben is asking during the day after he fails his CLAA catechism tests. Mark isn't hearing Ben wrestle through the implications of This Likeness is Chiefly in teh Soul, or We should take more care of our soul than of our Body because in losing our Soul, we lose God and everlasting happiness.
Ben's health is important but I need to worry about his soul and I can practically hear Satan laughing at the careless and thoughtless words of some people and their profound effect on Ben and the girls. That was what my letter was about. A warning.
What I find really sad, is to walk through that hospital and see all that suffering and know that it is lost. If half of those children were to offer up their suffering, this country would be Catholic, abortion free and the world would be at peace. But I doubt that any children offer it....They are all zombifyed on TV, Video games and mindless crafts. Do those things have usage sometimes for some of the more traumatic procedures-Absolutely! But not the way they are used constantly. I am going to stick you so here watch this TV show or movie....Lost. All of the suffering is lost. That is sad. All those priests dying in Haiti is sad, because there is no one to do the sacraments and preach the word of God now.
Ben is happy. Ben is stable. Ben has 2 parents and 4 grandparents and aunts and cousins and friends who love him.. He lives in a comfortable home with good food and clean water and lots of toys and books. He can still run and play. He can still climb trees and skateboard. For the most part, he doesn't suffer too much pain. He is being taught the truth. Thanks be to God.
Wow, so that helps me yet again, to put all my belly aching in perspective! Please Lord, come down upon us, and grant us your salvation, your peace, your love, and your blessings. Amen.