One of the biggest things I have and continue to wrestle with since Benjamin’s birth is finding meaning in all of the things that have happened to him. Trying to search for reasons why this happened to our family in particular. Attempting to reconcile the thoughts and feelings of how unfair everything feels. I became a very angry person for a long time after Benjamin was born. How is it even fair that there are so many people in world who don’t even WANT children, yet, they go on to have perfectly healthy babies, while my husband and I deeply desired children prior to having Benjamin, did everything in our power to maintain a healthy pregnancy, and yet he still faced so many health complications due to his prematurity? It just didn’t seem right. A lot of people would tell me the typical responses of “life isn’t fair,” and “sometimes bad things just happen,” but that wasn’t good enough of an answer for me. Prematurity and chronic lung disease was ruling our lives. If this had such a high impact on my life, I felt in my heart that I deserved a better answer than saying that bad things just randomly happen. I refused to accept that answer, because it left me feeling useless and as if nothing in my life ever really mattered or had much of a purpose at all if things truly just “happened” with no rhyme or reason. If I really believed in God, I had to know that even if God hadn’t directly caused my preeclampsia and Benjamin’s need to be born at 25 weeks, that in the very least He had intentionally allowed these things to happen in order to bring about a much greater good for our family.
It hasn’t been easy. At first, for me it was all about wanting to know the exact, specific reasons as to why God had allowed these events to happen. How could He allow these things to happen to us? If He was all-good, then why didn’t He stop these bad things from happening? Of course, I didn’t receive an easily understood answer on my part. And that really hardened my heart. For a long time, I purposely stopped praying because I wanted God to know that I was intentionally ignoring Him. That I felt so disgusted with Him that I wanted nothing to do with Him. I’ve been told that even if you are angry with God, shouting at the top of your lungs at Him is still better than trying to completely ignore Him. Because at least that is still talking with God. But I struggled to even address God in anger; I felt so hurt, wounded and abandoned by Him.
I think part of what made this period of spiritual desolation so difficult at this time in my life was the fact that I’ve always had a hard time with maintaining my prayer life. As challenging as praying regularly can be, though, I really do believe that prayer is one of the factors that best strengthens one’s relationship with Christ. I’ve been Catholic for almost my entire life. But for as much doctrine and theology that I’ve been taught in my 20-something years, I’ve learned that this has a much more of profound impact on one’s life only when there is an existing, personal relationship with God. I realized that while God loved and knew everything about me, I knew very little about Who God actually is. I knew things ABOUT Him, but I lacked knowledge of Him on a personal level. How He had and how he continues to show up in my life. And if you think about it, it’s kind of difficult to have great love for someone who you don’t know very well.
But with time, I have come to realize that all of the suffering and hardships that we have endured with and on behalf of Benjamin, have become the very things that have drawn me into a more intimate relationship with Christ. In my most desolate, darkest, despairing moments on this earth, I have come the closest to knowing and loving Him. And while I probably will never know all of the exact reasons as to why God allowed Benjamin to suffer so much from such a young age, I truly believe that for ME, in my life, that something tragic, and painful, and challenging, was just the thing that I needed in order to “wake up”, and to actively strive to know, love, and wholeheartedly follow God. It was as though I was someone who needed to have something terrible happen to me in order to truly search for meaning in this life and to contemplate the gravity of the meaning of life after this one.
Again, this is not to suggest that God directly or actively caused all of the hardships Benjamin endured to happen. But, I do believe that for certain reasons, He allowed these things to happen because He plans to use these things as an opportunity for a lot of good to be brought out of a less-than-ideal situation.
Have you ever read anything by Saint John Paul II? He published an apostolic letter in 1984 titled, Salvifici Doloris, or On the Christian Meaning of Human Suffering. While I have not read this work in its entirety, I just so happened to be skimming through sections of the work, and I found a few paragraphs that really stood out to me. Namely Chapter VI, “The Gospel of Suffering”, the last two paragraphs of Section 26 in particular. I’m going to quote those last two paragraphs of Chapter VI, Section 26, down below:
However, the interior process does not always follow the same pattern. It often begins and is set in motion with great difficulty. Even the very point of departure differs: people react to suffering in different ways. But in general it can be said that almost always the individual enters suffering with a typically human protest and with the question WHY. He asks the meaning of his suffering and seeks an answer to this question on the human level. Certainly he often puts this question to God, and to Christ. Furthermore, he cannot help noticing that the One to whom he puts the question is Himself suffering and wishes to answer him from the cross, from the heart of His own suffering. Nevertheless, it often takes time, even a long time, for this answer to begin to be interiorly perceived. For Christ does not answer indirectly and He does not answer in the abstract this human questioning about the meaning of suffering. Man hears Christ’s saving answer as he himself gradually becomes a sharer in the sufferings of Christ.
The answer which comes through this sharing, by way of the interior encounter with the Master, is in itself something more than the mere abstract answer to the question about the meaning of suffering. For it is above all a call. It is a vocation. Christ does not explain in the abstract the reasons for suffering, but before all else He says: “Follow me!” Come! Take part through your suffering in this work of saving the world, a salvation achieved through my suffering! Through my cross! Gradually, as the individual takes up his cross, spiritually uniting himself to the cross of Christ, the salvific meaning of suffering is revealed before him. He does not discover this meaning at his own human level, but at the level of the suffering of Christ. At the same time, however, from this level of Christ the salvific meaning of suffering descends to man’s level and becomes, in a sense, the individual’s personal response. It is then that man finds in his suffering interior peace and even joy.
A few things I took away from this –
- Every person who undergoes suffering in his or her life at some point or another will pose the question of, “Why did this happen to me? What is the meaning in what I am now experiencing, as awful as it all may be?”
- It is an expected, “human” response, to naturally rebel or protest when faced with suffering and difficult situations in life. I saw this in myself in the extreme anger I exhibited towards God.
- Most people would like God to provide them with clear, exact, and concise answers as to WHY He allowed them to endure the suffering they were faced with. And when they don’t get these answers, they become angry. For me, I felt like God was just ignoring me. What I didn’t realize was that God doesn’t answer human questions with human responses. He is GOD. He doesn’t respond in the same way that another human being would in answering a question being posed to him.
- God isn’t just looking to simply answer the “why?” question. When we are placed in difficult and challenging situations, God is calling us to accept these difficult yet unchangeable factors in our lives. He is calling us to allow these sufferings to change us, to imitate his Sacrifice on the Cross. And while Christ’s Sacrifice on the Cross was complete in and of itself, He still invites us and allows us to participate in His saving actions in the salvation of mankind when we take up and embrace the crosses in our own lives.
- Once this acceptance of suffering in one’s life has been made, it becomes easier to see possible reasons for why God may have allowed the suffering into one’s life originally.
- Perfect acceptance of your unavoidable sufferings is wrought with true happiness and interior peace.
So what does this mean for me in my own life as a special needs parent?
It means that as hard as it was to watch my son fight for survival for the fist 9 months of his life, that for reasons I may not know, God has CALLED me to not only be a parent to Benjamin, but to be a parent to the version of Benjamin who requires some extra special needs. It is my vocation within my general vocation to parenthood. For some reason or another He is going to present me with the opportunity to become the best version of myself in the situations that arise with special needs parenting. For some reason or another, THIS way of life must possess more ways for me to grow in my faith life and in my love for others, myself, and God compared to parenting Benjamin were he more of a “typical” child. This isn’t to say that special needs parents are somehow holier or “better” than parents to typical children. But just that, in my own life specifically, God saw fit that this style of parenting was going to provide me with opportunities for more graces and holiness.
With time, I have become much more accepting of where we are at in life. Saint JPII was so right! It really does become a bit easier to accept things over the course of time. And I found that the more accepting I have become, the happier I become. I know I have discussed it before, but all Benjamin’s small victories and accomplishments have such a great capacity for joy for me. It has taught me how to be more fully appreciative of the present moment. I’ve become so much more grateful for the gift of good health, and what a true blessing it is to be able to have your family all gathered together without anyone being stuck in the hospital. It has reaffirmed to me both the value and dignity of all human life, in whichever form it may take- whether it is an unborn baby, a medically fragile individual who constantly faces frequent hospital stays and life and death situations, the perfectly healthy person, or an elderly person nearing the end of his natural life. It has shown me truly how strong and brave the human spirit can be in the face of adversity. It has shown me this in ways I would have never fully appreciated had Benjamin been born healthy.
And with time, I have even begun to muse over possible reasons as to why God might have allowed Benjamin to be born at 25 weeks and why He allowed him to develop such severe chronic lung disease/need for tracheostomy and ventilator support. We have become connected to SO many different people and families once Benjamin’s lungs became sick and he required a trach to improve his quality of life. And if it weren’t for Benjamin becoming sick, I would have never even known any of these people. People who not only offered support to me when things with Benjamin in the hospital seemed unbearable, but people who I hope that I have also been able to extend support and encouragement to when their children were also going through some difficult times. People who I am honored and so incredibly blessed to now call my friends. Those who share in similar sufferings and struggles as you, it doesn’t matter how long you have actually “known” them. We are all connected in such a deep way, bigger than ourselves, that it is our very sufferings that strengthen our bond of fellowship. So I have been very blessed to have such strong relationships with fellow special needs families. I would not know such an intimate form of friendship had Benjamin been born healthy.
I also believe that Benjamin has really positively influenced many people in his short life. He has so many specialists who still remember him as the less-than-one-pound baby in the NICU who still ask how he is doing. All of the homecare nurses and therapists who have grown to know and love him, all of my family, friends and co-workers who have had the opportunity to know and care for him – he just seems to have a very special effect on people. And for all he has endured, he is a very happy child. He very often makes strangers in the elevator laugh and smile with joy when they see how happy he is. He isn’t a reflection of sadness and suffering, despite all of the sad situations we have been through with him. He inspires joy in other people. He is a living reminder that no matter how dire a situation things may seem, a resilient spirit, by the grace of God can accomplish anything.
That without the grace of God, he would not be here today. He is a living, breathing miracle.
So, I suppose while I will most likely never know all of the particular reasons as to why things happened the way they did with Benjamin, I am so thankful that I have arrived at a point in my life where in the very least, I can accept and see things for what they are. I only hope and pray that this continual process of acceptance of the daily sufferings that come with special needs life provides me with ways to keep growing in compassion, empathy, and faith.