My Child is Amazing Because…

The older he gets, I often find myself focusing on the things Benjamin struggles with.  Because naturally, the older he gets, the harder things become for him.  It is a knee jerk reaction to hone in on the difficulties he’s experiencing because as his mother I want to “fix it” for him; I don’t want him to continue to struggle with things most children his age have no problem with.  But the fact of the matter is, he will always be blind, and he may or may not continue to experience significant developmental delays throughout the rest of his life.  Allowing my feelings of sadness and loss over his inability to communicate verbally and to relate more easily with the people around him isn’t going to stimulate further brain growth or neural connections for him.  I’m allowed to feel sad, but choosing to be sad all of the time does no one any good.  Yes, we have our share of difficulties, but we also have our share of joys.  And one of the ways to help combat those feelings of sadness for me is to take some time to reflect upon all of Benjamin’s strengths and admirable qualities.

My child is amazing because he doesn’t take life for granted.  He has fought to be here since entering the world at a lowly birth weight of 15.9 ounces and measuring 8 inches long.  He has one of the most unique, infectious belly laughs you will ever hear, and I think the reason for this is because when he chooses joy, it is pure joy.  He chooses joy alongside the suffering and the struggle.  He slows down to appreciate the sunlight warming his back shining in through our living room window and giggles when he feels the breeze blowing on his back outside.  I think often times many of us choose to singularly focus on our sorrows, and we forget that we can still choose to see goodness and be joyful in the midst of our trials in life.  Benjamin has always seemed to recognize this, and he is the person who truly taught me how to do this as an adult.

11015328_10206221805006881_1644581850_n

My child is amazing because he understands the value of the present moment.  Yes, he has scars from his past.  Yes, what he endured as a baby will have lifelong impacts for him going forward.  But he doesn’t unreasonably hang on to those hurts – he chooses to adapt and strives to live his best life.  He isn’t overly concerned over what the future holds for him.  He simply IS.  He naturally searches for solutions to best harness his strengths.  Because he is blind, he devotes much more of his attention to auditory stimuli – with music being one of them.  He may rarely ever speak one word, but not a day will go by without hearing him hum a song perfectly on key.  He has begun to understand he can trip and crash into objects and people more easily than others, so he “listens” for foot traffic from his little brother in our kitchen before safely running a lap around our island counter at full force speed.  Despite being blind, running at full speed is one of the things that brings him the most joy.

46401738_10217850993169317_8104763184889462784_n

My child is amazing because he doesn’t try to be someone he’s not.  He doesn’t “do” or enjoy many of the typical activities you’d associate with a 4-year-old child.  But in all honesty, probably the only ones ever bothered by this was me, the parent!  He is happy being who he is.  He loves music, his toy car he can wheel around in, and Legos.  Of course we will continue to challenge him, but I’m realizing that as Benjamin grows, there are certain things he may not ever truly enjoy doing.  And that is OK.  It just means we get to find other ways for us to bond and spend time together.  Many times, just being with him is enough for him.  He just wants to be near the people he loves and who love him.  He is secure in who he is and of the love his family and friends have for him.  He recognizes that he is “enough”.

50748235_1101138793426783_6070417071479455744_n

My child is amazing because despite the past hurts he’s endured, he chooses first and foremost to embrace the good in himself and in others.  He reminds me that there is beauty in the broken-ness, if you so only choose to recognize it.

Advertisements

My Heart Will Always Hurt from This

I wanted to talk about something a little different today.  It’s something that’s been weighing on my mind and my heart for quite some time now, and with me, the only way I heal from experiences like the one I’m going to share with you, is through what I’m doing now: writing about it and sharing my experience.  I need to talk about it and acknowledge it in order to accept things and move forward with them.

Ever since Benjamin was born, I focused a lot of my time and energy on updating friends and family on him and how he was doing, what he was struggling with, and what the plan for him to manage all of his health struggles would be.  I don’t really talk about how I felt about a lot of things with Benjamin in day to day conversations with people, although I am very glad that I started this blog since it’s been a great sounding board for me to get my thoughts and feelings out there when it comes to my overall life experience thus far of raising a child with special needs.

Something I’ve shied away from sharing much of though is the emotional trauma I experienced in the days leading up to and following Benjamin’s birth.  And that’s really sad to me, because I’ve realized that I’ve kept these parts of my life hidden for too long, and I don’t want to do that anymore.  I know I am not alone in that unfortunately many women suffer some form of trauma from their own birth experiences – whether it was a healthy delivery or not, and regardless if it was, everyone’s experience matters and it’s something we shouldn’t be afraid to talk about with each other.

The night before our big gender reveal, 19 week ultrasound with Benjamin, I remember feeling crushing anxiety.  I kept repeating to my husband over and over, “I think something bad is going to happen tomorrow.”  But knowing that I was already someone prone to anxiety, he did his best to try to talk me down from the ledge that things would probably be just fine.

When we showed up for the ultrasound, the tech started taking some measurements and I remember her growing very quiet.  She kept a straight face and calm demeanor, but in my heart I felt that something was wrong.  You could feel the mood of the room had changed, and this overall feeling of heavy heartedness just hung over me.  After a few more minutes of scanning, she told us very calmly that our baby should have been measuring at 19 weeks in size today but was only looking to be about 17 weeks for growth, and that she wanted the maternal-fetal-medicine consultant to be present for the remainder of the scan to take a closer look at what was going on.

The doctor came in and finished the scan.  He told us he would recommend we have an amniocentesis done because our baby’s brain ventricles appeared enlarged.  The supposed enlarged ventricles coupled with baby being severely growth restricted, he said, can often times indicate that some sort of genetic syndrome is the culprit, and that it be important for us to check for any fatal genetic syndromes so we know what to expect and prepare for in the long run.  This doctor thought there was a possibility our baby could have something called Triploid’s Syndrome, in which not 2, but 3 copies of chromosomes are present.  This syndrome is ultimately “incompatibe” with life, and sooner or later our baby would pass away if this was the case.  We had an amniocentesis done, only because we both needed to know if our baby had a chance at living a longer life with us.  On our way home from that appointment, we passed 3 women holding their newborns in the lobby who must have been newly discharged from the labor and delivery unit and were waiting for their rides to pull up to the hospital entrance.  It felt like one last cruel slap in the face watching them get to leave with their healthy babies after just being told moments before that the odds were that this would never be us with our baby.  The amniocentesis was performed on a Friday and we would not get any preliminary results from the test back until that Monday.  Those 3 days of waiting were probably the most severe forms of complete and utter agony I have ever experienced in my entire life.  I had no desire to eat or sleep.  My husband was so upset he actually vomited when we got home.  When I did fall asleep from the sheer exhaustion, I would dream of graveyards and funerals and burying my baby.  It was the most abandoned and alone I’d felt in my entire life.

As many of you know, miraculously and by the grace of God, my doctor called me that Monday to tell me all results from the amniocentesis came back normal.  Our baby was indeed a boy, and he did not have Triploid’s or any other type of fatal condition.  It was such wonderful news yet still extremely unsettling not knowing why he was so severely growth restricted and why my placenta had failed to form correctly.  Our doctor really compounded my anxiety in the following weeks by qualifying every small bit of positive news with a statement such as, “You really need to prepare yourself for the very real possibility that this baby could pass away in utero.”  No!  I refused to accept that, and it made me so angry feeling like this was all the doctors there could focus on.  I needed someone to be real with me, but I so desperately wanted and needed someone to do that in a way that allowed me to hold on to hope.  And I don’t feel like I got that there.  I felt like a ticking time bomb, though unsure of what exactly would happen – whether my baby would quietly pass away and I not realize it until my next ultrasound, whether I would spontaneously go into labor, or what.  I just didn’t know.  But it was extremely hard seeing a positive way out of it.  They gave me no hope.

Of course from that point on I was deemed high-risk and was going in for very frequent appointments and ultrasounds.  Out of nowhere at my 24 week appointment, my blood pressure skyrocketed to 170/90.  As I am not chronically hypertensive and this was an abnormally high reading for me, I was immediately admitted for observation/rule out preeclampsia.  And as you all know, preeclampsia was anything but ruled  out.  24 hours into my stay, I developed blurred vision and crushing headaches.  I was transferred over from the antepartum section of the labor and delivery unit to the delivery side.  I was started on a magnesium sulfate drip.  Fetal heart rate monitoring systems showed that our baby was starting to show decelerations and signs of distress.  The decision was made to deliver him by c-section immediately to save his life.  I remember laying in my hospital bed hearing the woman in the room next door to me give birth to her baby who was crying.  Then I remembered the conversation we’d had with the neonatal nurse practitioner just the night before, when she’d told us not to expect to hear any sort of cries if our baby were to be delivered soon as he would be much too small for that.  I started to cry being surrounded by so much life on this hospital unit but feeling like our baby was already being doomed to death.  No one besides my husband and I believed in him that he could do it, that he could survive.  It made me angry that they put me in a room smack in the middle of all these healthy births and deliveries occurring knowing that with even the best possible outcome for us, I was not going to get to hold my baby in my arms after they pulled him out of me.

The c section itself was uneventful.  The one beautiful moment in that entire day was hearing Ben cry when he was delivered.  They told us he wouldn’t but he did.  It was the second moment (the first being the clean results from our amniocentesis) that I realized Ben was not going to do anything the doctors predicted he would.  It is also one of the most significant moments in my entire life.  As messy and traumatic that this whole birth experience was for me, I do not for a second forget to see God in it.  Hearing my 15 ounce Benjamin cry so loudly that everyone in the operating room stopped to hear it is easily the clearest moment I have ever witnessed God at work in my life.  What was viewed as impossible for man was very plainly more than possible with God.

After the c-section I just remember feeling extremely weak.  Even 12 hours after it had been done, I couldn’t even stand up without major bouts of hypotension, ringing in my ears, and vomiting.  I chalked it up to the sedatives I’d received in the OR, but I could barely keep my eyes open.  Over the next couple of days, my labwork showed my hemoglobin was trending downward extremely quickly.  I believe the lowest it got was 6 mg/dL.  I had 2, maybe 3 red blood cell transfusions.  My abdomen was extremely bruised and excruciatingly painful, but being a first time mom I figured this was all part of the recovery process for a cesarean.  I soon found out that what I was experiencing was abnormal, and that I’d suffered internal bleeding from the incision that had been made in my c-section.  I ended up having to go back to the OR to have my incision re-opened to cauterize the bleeding.  By now we were already to Tuesday, almost Wednesday of that week.  I still hadn’t seen my son in person for more than a few brief moments after the c-section before he was taken to the level III NICU.  I was extremely upset and discouraged.  I had a great nurse who waited for me to stabilize after this second OR procedure I’d had done who then helped get me over to the NICU at 11:30 at night to see my son.

I would go on to spend 3 more days admitted to the hospital before going home.  I was put on a blood pressure medication to control the residual high blood pressures I was still experiencing post partum due to the preeclampsia.  A few weeks later, I soon learned that this medication was actually dropping my pressures too low..so low that I felt tired all of the time.  I could barely keep my eyes open and would just fall asleep for naps at home.  It made it very difficult for me to go to the NICU feeling like this as I didn’t feel safe to drive.

Over the next few months, I suffered crushing anxiety while Ben remained in the NICU.  I felt as though there were a hole in my chest, like I had to almost brace my chest with something just to make it through the day.  It physically and emotionally felt hard to breathe.  I’d had an EKG done to rule out any cardiac issues when this first started, but it never showed anything abnormal.  I think it was just another way my body was manifesting my emotional state of being at the time.  I would have flashbacks of certain events leading up to and following Benjamin’s birth without warning.  I remember this very clearly happening to me when I was at Holy Thursday Mass when Benjamin was still in the NICU.  It was such a powerful memory that I literally felt like I were back in the hospital all over again, reliving what had happened.  To this day, and thankfully to a much lesser extreme, though much more infrequently, I still have moments like that which happen to me.  I have since spoken with a psychologist who has really helped me work through a lot of the unresolved trauma and grief I was experiencing.  I guess the hardest part for me now is realizing that the hurt never goes away completely.  Rather, it’s something you come to accept and live with.  You get to choose how it shapes you as a person, whether it stretches you to shut yourself off from the world or to open yourself up even more to others than you ever had before.  I would like to think that I have tried my best in choosing the latter.  Not always, because I’m human and I mess up just like everyone else, but this particular quote regarding suffering has remained very poignant with me:

“Suffering is a great grace; through suffering the soul becomes like the Saviour; in suffering love becomes crystallised; the greater the suffering, the purer the love.” -St. Faustina

I hurt more because of what happened to me.  But I don’t regret the clear result of what has happened to me.  I love more, and better, and deeper, because of what has happened to me.

Even writing out this whole account has felt both equally upsetting yet strangely cathartic for me.  Thank you to the people in my life who have always been there to listen to me.  I hope you feel that I have done and do the same for you.  Again, I know this post is heavy, so thank you for listening.

 

 

When Nothing is Ever “Good Enough” for the Medical Community

Sorry for the delay in posting!  As many of you know, Benjamin was decannulated on January 17th!  He has done wonderfully breathing all on his own without his trach since then.  We are so happy and proud of all our little boy has accomplished.  We have been adjusting to life without the trach, and so far we are loving it.  We are just….happy.

So you know what irritates me to no end?

When none of the accomplishments made by your child with special needs is ever considered sufficient by doctors and specialists.  That instead of truly celebrating with us and recognizing how long it took to meet the most recent goal, it’s immediately on to the next “problem” that needs to be “fixed” immediately.

Earlier this week at my son’s doctor appointments, I was repeatedly asked – as I am at every single appointment – if Benjamin “is eating by mouth yet?”

My answer is always the same: he has interest in table foods, but he still does not fully grasp the concept of how to swallow.  He is afraid to swallow and much of the food runs out of his mouth.

And for some reason, every time – EVERY TIME – I say this to whomever poses this question, he or she acts as though this is a HUGE surprise.  As though my son, who has been tube fed for his entire life, should be able to just suddenly have things “click” and both understand how to and have the healthy desire to eat food orally, JUST because he has now officially passed a swallow study and he has been given his doctor’s blessing to start learning how to eat. This week, the response I received was a disappointed and haughty, “OH.  So no improvement at all since the last time we saw him.”  

Oh, and Heaven forbid if my son hasn’t gained any weight since the last doctor visit.  If he hasn’t, the “he is going to suffer delays in his brain development if he doesn’t start gaining weight again now” card is played, and I am once again made to feel like a failure of a parent.

Why don’t I tell you what my son CAN do:

He can breathe on his own.  An accomplishment one year ago from now, we would have feared was still a very long time coming!

He can sign “more”, “help”, and “book”.  He is learning how to sign “please”, “thank you,” “on”, and “music”.  He is very smart and both understands and follows simple verbal commands that you give him.

He is crawling and can pull himself up into a standing position with incredibly minimal support, can cruise furniture like nobody’s business, is beginning to balance himself while standing up and will hopefully be walking very soon.

He enjoys the process of sitting in his highchair, tasting pureed foods, and feeding himself small bites of it with his baby spoon.

He loves to play music on our piano, read books, and cuddle.

He is steadily gaining weight again (one of the things I am constantly harassed over!).

He can now tolerate being fed blended food through his feeding tube within 30 minutes’ time…he used to require a feeding pump to deliver the same amount of food to him over 90 minutes without running the risk of him vomiting!  Now he is down to 1/3 of that time to eat, and he is able to be unhooked from his feeding extension tubing for much longer.

Why is it that we feel the need to automatically “fix” everything about someone in the medical world?  Some things either cannot be fixed, they don’t NEED fixing, or, they take a lot of time and effort to fix.  People aren’t just “fixed” with the snap of one’s fingers.

Why can’t people just be HAPPY for my son and all that he has accomplished?  By brushing over all of the goals he’s met and only acknowledging the goals he has not yet met, his overall life experience is greatly minimized.  Since when are special needs kids expected to be perfect?!  I’m not perfect.  No one is perfect, so why in the world do we hold our kids to that standard?

I’m not saying that we should ignore the areas for improvement for our children.  But for Pete’s sake, medical professionals need to learn how to give proper acknowledgement and praise when they see that a child has made progress, EVEN if it isn’t necessarily progress in the area that they were looking to see.

Medical Professionals: be patient with our kids.  Be patient with us parents!  You have absolutely no idea how hard we are working for our children.  Put yourself in our positions.  You have no idea how personally and to heart we take all of the remarks you make to us when you make it known that our children aren’t progressing in the fashion you would like them to.  You have no idea how small and belittled we feel, or how soul crushing it feels when someone completely disregards all of the things you have been working so hard on and instead only chooses to focus on all of the areas of weakness in your child.  How would you like it if someone treated you and your child that way?

My child may never be “good enough” for you, but he is more than enough for me.  I am proud of him and always will be, whether or not you choose to acknowledge that yourself.  I am done allowing myself to feel as though I’ve always got something to prove to the medical community about my son; he is strong enough to do all of the proving himself in all that he has accomplished these last 2 years of his life.  And, if you are unable to recognize that, then that is your loss – not ours.

Untitled

I know this has been written about before, but I’ve been hearing it a lot in my life lately, and wanted to say more about this subject.  I’m talking about when someone says to my husband or me, “I don’t know how you guys do what you do” – referring to us parenting Benjamin.

Well, guess what?  Neither do I.  I don’t know how I even made it out of last year alive.  The countless moments where I felt as though I would be crushed beneath all of the stress and tasks placed before me that Benjamin needed my husband and I to do for him.  I don’t know how I got through all of those doctor appointments that would last hours on end while running on little to no sleep at all.  I don’t know how I put up with and weeded through all of the homecare nurses our agency tried to send to us who had absolutely no idea how to suction, change a trach, and let alone how to safely care for and monitor a child who was ventilator-dependent. I don’t know how I managed to find the time to collapse ALL of the cardboard boxes holding our monthly order of the myriad medical supplies delivered to our house for Benjamin before our basement was entirely overrun with cardboard (it’s all contained to the garage now 🙂 ).  I don’t know how I avoided suffering a complete psychotic break from reality from all of the unresolved grief I had regarding the way my pregnancy ended, almost losing my child, and learning to accept what our new “normal” with Benjamin was.

I don’t like when someone tells me, “I don’t know how you do it,” because to me that implies that my job as a parent to MY child is somehow this huge, horrible, insurmountable task that has been placed before me.  That compared to what my life would look like if Benjamin were healthy, that this reality we are living is just SO hard compared to that of another family with children who do not have special needs.  What mere human could ever successfully parent a child with special needs?

Yes, I know people mean well when they say something like that.  That they are most likely trying to give me a compliment.  But even wording it differently, by saying either, “Seeing you take such good care of Benjamin is really encouraging for me to witness,” or simply, “I think you are an amazing mother” is so much more than enough to say to me.

I am not super-mom.  I am a mom to Benjamin.  I am here to love him, encourage him, teach him, and ensure that all of his needs are being met.  Are some of the things we experienced within the last 2 years a bit atypical when it comes to parenting?  Of course, and I would never deny that.  Sure, he has some “special” needs now.  Maybe he won’t always have all of these particular needs, and the way that I care for him will change according those needs.  But even if he did end up needing his trach, vent, and feeding tube for his entire life, the fact of the matter remains:

We are all just doing our best to care for our kids as parents.  Our children are going to have different needs, but those needs don’t dictate who is a “better” parent than another.

If your child had a tracheostomy, feeding tube, and required a ventilator to breathe, then I assure you that you would behave in the same way that I have and do.  Our circumstances aren’t what make us better people.  It is what we choose to MAKE of our circumstances that brings about the potential for us to become better individuals.

I would like to think that having a child with special needs has helped me to become a better person, but I don’t know.  Were there times that I felt that I’d come to grasp a much clearer understanding of what true gratitude is since becoming a parent to Benjamin?  Absolutely.  Were there countless moments that I complained, had an emotional meltdown, threw an adult temper tantrum, and felt like I was being dragged through this life of special needs parenting while kicking, screaming and protesting all the way as to how “unfair” things were?  Oh heck yes.

But I’ll tell you what: I didn’t just “do it” or just “get through” all of the difficult times this last year has brought us.  I had help.  I had people praying for Benjamin, our family, for my husband and for myself.  I had people who were willing to reach out and be my friend when they recognized how lonely and isolated I so often felt.  I had co workers who brought food to us when we would forget to eat, and who witnessed my mini break-downs in our conference room on breaks or before shift change who were happy to be a listening and encouraging ear.  I had friends and family members who, even if they couldn’t physically come to me in person, would and still do regularly stay in contact with me via text, email or facebook messaging.  It was the people who made an effort to stay connected to me who largely impacted how well I handled things once Benjamin finally came home from the hospital.

So, if you are a friend or family member of mine, the next time you tell me, “I don’t know how you do it,” give yourself a pat on the back.  You basically just complimented yourself for being so supportive of me.  Because if you have played an active role in my life within the last 18 months, then chances are,  YOU are one of the reasons why I do what I do so well.

So thank you.

Finding Meaning in the Sufferings of Special Needs Parenting

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 –

  1. 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?”
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.

 

One of My Deepest Fears

I think most parents, regardless of whether or not their children require special needs, all want to feel validated.  They want others to recognize how hard they are working to care for their children in the best and safest way possible.  For me, it was hard when Benjamin finally came home from the hospital because early on my husband and I had to openly admit and accept that we did not have the capacity or ability to solely care for him all on our own, without help from anyone else.  Aside from the myriad of doctor and therapy appointments Benjamin required in order to remain healthy and continue to meet developmental milestones, we had, and still do have, registered nurses who work through a homecare agency that aid in watching Benjamin.  This was and still remains especially vital for overnights as Benjamin needs to be watched 24/7 to ensure his airway with his trach remains patent and stable.

When Benjamin first came home from the hospital, I was so excited to *finally* be able to be the one person who did everything for him.  I quickly realized that if I were to do this, I would be crushed by the exhaustion.  I saw how important it is for me to take care of myself, to get as much sleep as possible, and to find ways for me to emotionally recharge.  Were there and are there still days and nights where I feel like I’m being run into the ground by sheer exhaustion?  Of course.  But I know that I have a support system in place when that happens.

That being said, one of my deepest, darkest fears is that no matter how dedicated of a parent I am, no matter what I do or how hard I try, that it isn’t going to be good enough.  When Benjamin goes to doctor appointments, we get asked by specialists and therapists so many times, the same question.  “How are you doing?”  And while most people ask that just to be kind (I think), I can’t help but somewhat inwardly cringe when that question is asked of me.  I can’t help but wonder what all of the reasons are for why they are asking me that question.  I feel like I have to put on my brave face and say, “Oh, we’re just fine.”  Because what will they think, say, or do if I am honest?  What if I told them how exhausted or stressed out I’m feeling?  Would they think I was emotionally unstable?  Would they force me to talk to a social worker?  Would someone pass judgment on me as  an unfit mother and call Child Protective Services on us?

As irrational as this may sound, this is one of my biggest fears.  That all that I’m doing for Benjamin would be considered not good enough, and that he would be taken away from me.

I think that’s what’s so hard about having so many people overseeing your child’s care.  I oftentimes feel like I’m under a lot of scrutiny, as if there are so many outsiders observing me living my life under a microscope.  One too many slip-ups, and they’ll try to tell me they know my what my child needs better than I do.  I see it in the small things I catch myself doing, such as hurriedly trying to tidy up the kitchen and cleaning dirty dishes before Benjamin’s in-home therapists come for a visit so they won’t think we are untidy and messy, and I see it in bigger things too.  Like, when someone asks me how I’m doing that day and I’m afraid to be completely and brutally honest with them about how some days really are harder than others.

I can only blame myself for struggling with this fear.  But at the same time, I wish things would have been explained differently to us when we first discharged from the hospital last fall.  When Benjamin first came home, he did so after we’d been listening to doctors and specialists hammering into my and my husband’s brains for months on end that it was under no circumstance safe for us to bring Benjamin home without any homecare nurses available to help us care for him.  And while I agree that it was really good and important that we had nurses hired on to our case to help us out, the way that the need for nurses was explained to me, instead of empowering my husband and me, made me feel helpless and even more loss of control over my ability to safely and competently care for my child.  Like, I can’t do this UNLESS we have nurses to help us.  I wish other things could have been emphasized instead of how unsafe and near-impossible it is to care for your child without homecare nurses.  Because guess what?  There’s a huge shortage of homecare nurses throughout the country.  Benjamin was qualified by insurance to have a nurse working in our home 24 hrs a day, 7 days a week for being 100% ventilator dependent when we brought him home.  And guess how much coverage we got, on average?  1 day nurse for 3-10 hour shifts a week, and 1 night nurse for 3-12 hour shifts a week.  Not to mention we lost our day nurse after a few months.  The rest of those days and nights in the week were solely on my husband and me.  Was it tough?  Heck yeah.  But we did it, and we gave up our sleep for our son, because that was what he needed and his needs will always come first.

I wish when we had left the hospital, that instead people would have been honest with us about how vital it is as a special needs parent to make sure that we are taking care of ourselves.  That how some days are going to be really hard, and that allowing ourselves to take breaks, and having time to eat, sleep and shower are all extremely important.  How being able to keep doing those things is going to be our rock of normalcy when it feels like nothing else in our lives is typical.  Being told that it was good to accept the extra help because we need to take care of ourselves too would have been a more preferred method of explaining the necessity of accepting help from therapists and nurses in the home setting, in my opinion, instead of making someone feel like they are incapable of being a good parent to their special needs child without accepting all of the available help.  Which, not to mention, said “help” was not even fully availble to us when we discharged.  Talk about setting someone up for feeling like a failure.

Special needs parents face a lot of what ifs and unknowns with their children.  It’s trying to figure out what your child needs based on their medical condition, but also trying to maintain that balance of remembering that you are that child’s mother or father too, and nurturing that parent-child relationship.  We are under a lot of stress.  We need to be told that we’re doing a good job.  We want encouragement.  We want to know that if we admit that some days are harder than others, that we won’t be judged too harshly.

To all of the family members, friends, co workers, and specialists who have been a genuine listening ear for me when things were hard and I felt like the absolute worst parent for not knowing what to do, thank you.  To all of the people who helped validate me in reminding me that I was doing a good job caring for Benjamin, thank you.  There may be a lot of unknowns when it comes to raising Benjamin, but as long as I know that I’m doing the best job I can as his mom, well, that carries me a long way.  It is one of the few things that fuels my fire to get us through all of the uncharted territory we face.

Regarding Grief and Gratitude as a Special Needs Mom

Grief is not something that is felt simply when a loss occurs.  It is cyclic.  It comes and goes, and that can look different depending on the individual who is experiencing it.  This is something I’d already known prior to having my son Benjamin with chronic lung disease, but I did not so acutely feel the truth of what grief really was until he was here with us.

“But wait!”, you’re thinking.  “Benjamin is alive and thriving.  How can you grieve a child who is still here with you?”

But you see, I can.  And I do.

Let me make one thing clear:  I am SO grateful that Benjamin survived being born 3 months early and that despite the chronic conditions he is still combating, that overall he is really doing quite well health-wise.  Not a day goes by where I start out my day thanking God for how blessed our family is.  But you see, there are still times that I do grieve.  As much as I’ve been given, there are still many things that I and my husband, that Benjamin, have lost due to his special needs.  And that is what grief is: a loss.

When my son was born at 25 weeks, the ideal, anticipated version of myself – the healthy, non-preeclamptic mother who would give birth to a perfectly healthy baby born at term – died.  The “healthy” version of my son died that day.  The dream of having a normal, “typical” family died.

The losses did not stop on the day of my son’s birth, though.  That day was of course the hardest.  But there were many other losses scattered throughout our 238 days long NICU and PICU stay.  The loss of a child who would be able to breathe on his own when Benjamin needed a tracheostomy put in and required ventilator support 24/7.  The loss of a child able to eat food by mouth due to having been so sick for so many months that he was unable to safely swallow, requiring a feeding tube to be placed.  The loss of a child who could see when his vision was ravaged and almost completely destroyed by retinopathy of prematurity.

Yes, it is true.  The ideal version of my son died on the day he was born.  I died that day.

But I have come back.  And I am a completely and utterly different person because of that experience.  It was hard at first.  Even being in the elevator with a stranger and her healthy newborn would be enough to send me into tears of grief, desperately wishing and wondering why that couldn’t have been my son and me.  It was unbearable at first to see friends welcome healthy newborns born after my son had been born yet being able to take them home from the hospital when my son was still stuck there.

But these days, it’s easier.  Grief is still surprising and cyclic in my life.  I will convince myself that I accept all of the things that are maybe a bit harder to manage with Benjamin in our daily lives.  And then, out of nowhere, some little, seemingly small thing, just hits me with the reminder of what was lost.  Last month at a birthday party, I watched a friend’s 6 month old crawl to a toy she wanted on the floor.  As sweet and cute as she was, it made me sad seeing my almost 2-year-old son still unable to crawl.  Grief is a funny thing like that.  It sneaks up on you in the most unassuming ways and when you least expect it.

With time though, acceptance of your situation inevitably sinks in.  If and when I experience a moment of grief these days, the  moments that follow the grief are often quite beautiful because I am more easily able to put things into perspective.  Yes, maybe my son is not walking or talking yet as a “typical” toddler his age most likely already is, but, he has beat the odds.  He was the baby who was not even expected to live.  And look at him now!  He is thriving. He should be able to be decannulated (have his trach taken out) in the next few months if he continues to improve.  It makes me extremely grateful that my son is even with me at all.  His mere presence is the ultimate blessing.  I have come to realize ever more clearly that his abilities (and dis-abilities) do not define his worth as a person.

Just yesterday, Benjamin, at exactly 21 months of age, crawled for the first time.  I was so excited and happy to see this that the sight of him doing this brought tears to my eyes.  Yes, I may still experience grief over some of the things that do not come easy to him, but because so many things do not come as easy to him as they do for other children, it makes me all the more proud of him when he does accomplish another goal, or meet another milestone.

Ultimately, I think that most parents just want to be proud of their children.  Nothing more could make me happier as a mother than being able to say to another parent proudly, “That’s Benjamin; that’s my son.”  I so often hear so many parents make this statement when their child accomplishes something great, such as graduating with honors, or joining the military, or getting accepted into a prestigious college.  But I’ve already said that statement about Benjamin.  He has made me proud since the day he was born and fought so valiantly for survival.  Not a day has gone by that I have not been bursting with pride for him, for all of the hardships and obstacles he has fought and overcome in order to live and to remain here with us.  Yes, I’m still allowed to grieve the “normal” motherhood and babyhood that was lost to us.  But the gratitude of realizing what a blessing my son is is so much stronger than that.

11026281_10207255677173039_4707379664768939151_o