Pain and Fear. Two distinctly separate things. Yet, in my current season, I’ve become more aware of how they go hand –in- hand. I am afraid of pain, both physical and emotional. It’s uncomfortable. It makes me not think clearly. It makes me act in a way I don’t like. I can’t function when I am in pain. So, I find myself avoiding certain things at all costs; certain people, places, circumstances that cause pain. Easy enough when you’re in the driver seat. But, what about when it’s chosen for you? When your actions didn’t directly cause the pain you feel? It literally just shows up at your door one day! You then have no choice but to face your fear… and overcome this pain. But how??
For all I have experienced recently, I have realized that it is absolutely crucial to be able to go with the flow. One day can be light and easy, but everything can change by the next day. This year has taught me the value of flexibility and perspective. We all have bad days, but we can get past them with the right mindset. Tomorrow represents a new day; a fresh start. As a parent, this becomes glaringly obvious as I dance around my 3 year old son’s different moods from day-to-day. On one day, he can be a little dictator, refuse to cooperate, and demand to wear his Thomas the Train robe as I need to pack him and Ashlynn up to rush off to an important meeting or doctor appointment. And then the next, Cristiano reverts back to his typical inquisitive, attentive, helpful, and loving ways. These are the ebbs and flows of parent life, I suppose…
As I was writing this particular blog, I had a hard time channeling the despair and pain I felt in the immediate weeks following Ashlynn’s PVL diagnosis. Although I would momentarily conjure up some vestiges of that tremendous agony, I realized my pain had subsided for the time being (that’s not to say it won’t be back some day later in the near future). But, it’s almost as if I had broken free of the chains that had been holding me back; I found myself in a season of growth which no doubt was the result of my pain. Let me explain…
I had started this blog a while ago. I kept getting sidetracked from this topic of weathering the storms and breaking through the pain. This topic was making me uncomfortable. At the time, I wasn’t comfortable sitting in this place of discomfort, this place of darkness. I didn’t feel capable of shouldering this emotional weight. Typically, my blogs are meant to be uplifting and helpful to others that may be going through something heavy. Before I had my epiphany, my blog sounded something like this: “Yep. Pain sucks – there is absolutely no reason for it to exist besides making us suffer. Have a great day!!” Ok, so maybe it wasn’t that basic, but you get the idea. Anyways, I knew better than that and up until last week, I had no idea how to articulate what I was trying to say. So, I avoided saying anything at all. But then, last week at church, we heard a message from a guest Pastor. And as a faithful and fierce believer, it was absolutely no surprise to me that his message just so happened to be about PAIN. Yep. Just when I needed it, God showed up… as He always does!
This message was about how we can use our pain that we all encounter in life, embrace it, and turn it into power. Since I started blogging, I have received so many uplifting messages about how strong I am, or how lucky Ashlynn is to have parents like Chris and myself, or how she will absolutely succeed because of our determination. And to be completely honest, there are many times when I question my own strength. I question, will I be enough for her? Will I be able to give her exactly what she needs to keep growing and thriving? If I want to be completely transparent – which is something I promised myself when I decided to begin my writing journey – it is my FEAR that gets in the way of me believing I absolutely can. And what am I afraid of?? More pain. Especially when it comes to my children. I think any parent can relate to this.
There is an immense amount of pain that comes along with a diagnosis. In Ashlynn’s case, the pain I fear is not physical pain, but absolutely of an emotional nature. I am learning to cope with the personal fears I have for her life and the emotional pain that may arrive at my doorstep if she is only to use wheelchair and has to watch from the sidelines, or if she won’t get to have sleepovers in middle school with her girlfriends; if she doesn’t get to go to Prom, choose a profession of her choice, or walk down the aisle. As you can see, it’s really easy to let my thoughts get away from me. I am absolutely horrified that I will experience heartbreak over and over with every struggle she will undoubtedly face in this journey. I think any parent would be lying if they said they don’t think ahead and try to imagine what their child’s future might look like. Now throw in the unknowns that a diagnosis brings and it can be a really ugly, dark pit if you let it. Whether it be for you, your child, or anyone you love, a diagnosis can be painful for so many reasons, but mostly because you can’t do a darn thing about it. We begin to question “why?” I began to question why God would even keep pain around! It can’t possibly have any good use! But, again, this message brought to my attention that there is an exact reason why; a greater purpose. And this pastor’s message gave me a better perspective.
We all have our mountains – from battling cancer or some other disease, to grieving the death of a loved one, to weathering the storm of a financial crisis, or maybe moving forward after a failed relationship… These mountains represent a painful experience that has been placed before us. But, to all of you going through something, anything, no matter how big or small that causes you pain, know that there is a purpose for it all. It’s ok to feel your pain; to sit with it and process it. It’s ok to feel what you are feeling. It’s ok to be scared. You are not alone. And I ask that you give yourself permission to feel it for as long as it takes to get through it. Because you will. And I promise you, when the dust has cleared, and the clouds have parted, you will have gained more than you have lost. It’s absolutely not easy. I’m learning that as long as I keep standing and just exist in the presence of this painful emotion, I will acclimate to the new weight and get stronger with time. Previously, I may not have felt capable of shouldering this weight, but when I view these circumstances from a broader perspective, and one where I place my faith in God, the pain doesn’t overwhelm me. I can handle it. And you can too.
I was once told that we will know when we have healed from an experience when we are able to speak about it without getting (overly) emotional. There are many days when I can speak extremely openly about what Ashlynn has been through and what she may still have to go through in the future. But I have yet been able to say, out loud, without crying, that we still have no idea if Ashlynn will ever be able to walk with absolute certainty… I can now write it though! So that’s a start!
So… why does pain exist? I believe through pain, we grow. Let that thought sink in for a minute. Pain is almost necessary for growth. Think about all the times in your life that you have experienced pain. It comes in many shapes and forms. When we take a look back during those times, we also may see that we learned so much. About ourselves, about others. Maybe it humbled us. Maybe it made you listen to things you may have never heard before. Maybe it helped you look through new eyes of empathy. Maybe it showed you just how strong you really are. Maybe it showed you what the important things in life really are.
When we go through an experience that causes us pain we begin to see that we all have our own personal battles. Again, we all have our mountains we are trying to climb. When you have been through an experience of pain, the world looks a little different when you come out on the other side. Which is the good news- there is light at the end of the tunnel. Pain doesn’t last forever. You have the power to choose the way in which you walk through it. “You can get bitter or you can get better.” I can wholeheartedly say, I have become a better person through my pain. My ears and eyes are wide open. I can see each and every one of you going through painful times with your children. With your spouse. With your friends. I know your pain. I know the soul crushing hurt. Know that you are not alone. Others have walked your path, and will continue to do so after you have passed by.
If anything, I want to encourage you to use your pain for good. Pain is not for no reason. It is not because we deserve to hurt. We are meant to grow and also help others do so in the process. Your pain was created for much more than hurt. Trust in the process- it’s part of your journey. I can promise you there is purpose in all of your pain. Find it and embrace it. Keep your faith and your hope. Find what works for you to remind yourself you will get through this. For me I read and write. I find books that give me hope and bring light to my life. I find friends that I feel safe with to talk to. I keep my personal interests and remind myself to take frequent mommy breaks to do what I enjoy. I pray. A lot. I read my bible- for the first time in my life, and find examples of strength. I thank God each and every night for all that He has done for me and for my beautiful family. I thank Him for my beautiful daughter. I thank Him for giving me the strength to walk right alongside her for as long as I need to…until she is able to walk alongside others in their journey of pain and triumph.
Most importantly, WE are ok.
Turns out – he wasn’t colicky- he was just being Cristiano. He is smart, he is observant, he is difficult at times, and he’s not scared to tear up a room in protest. He loves cookies, hotdogs, pizza and chicken “tenders.” He knows the name of every Thomas train that exists! He is loving, thoughtful, and so silly. He’s my “mini me.” I’d have to say one of the most heart-breaking things today with Ashlynn’s diagnosis is how this will affect Cristiano. I know some people might stop upon hearing that and think, “well aren’t you being a little silly thinking so much about your older child??” And the answer is no. I don’t think I am. Just in the (almost) seven months of constant physical therapy, occupational therapy, speech therapy, it is so easy to look past your “typical” child and put all your energy and effort into your “special” child. (I still hate those terms… ) I praise her for the simplest things and yet get frustrated with him when he does certain things that almost every toddler does! The realization that, as a mommy, I could inadvertently be devoting more time or attention to one child over the other, is devastating. It’s something I am still working out. The guilt that comes along with trying to figure it all out is daunting. But, would I feel much differently if we weren’t in our specific situation? I would still have to balance between a new baby and my toddler… For some reason, it’s not this moment that bothers me… it’s the future. We still don’t know the severity of Ashlynn’s diagnosis. So it’s another “wait-and-see” type of situation… my favorite. “Have patience” has never had a more important meaning in my life.
One day, daddy somehow worked his magic and the next thing I know Cristiano was part of the playroom festivities. It made my heart feel so much better knowing that while I was upstairs with Ashlynn, he was downstairs being occupied, engaged, and just having fun. He absolutely loved it. In fact, he still asks to go there! They started calling him the “mayor of the playroom.” You had to ring a door bell to enter, so every time he heard that bell, he would instantly drop whatever he was doing, and go answer the door to say Hello, introduce himself, and greet everyone with a big smile. He loved the kids that came in to play. He knew their names. Some were very sick- some couldn’t walk, or talk, some scooted around. He didn’t care; he played with them all. He even would pick out toys and bring them to the kids that couldn’t get out of their wagons or chairs. He showed signs of empathy I never knew a three year old could have. He would tell the staff that he was going to be a doctor and would proudly tell everyone about “Baby Ashlynn” upstairs (whom he still hadn’t been allowed to meet yet). Even then, seeing how happy he was in that hospital playroom, my heart still broke for him. I was sad we weren’t at a park or outside taking a walk. Or that he wasn’t in a fun play class. As we received the diagnosis for Ashlynn, my thoughts quickly raced to our future and what this meant for Cristiano.
I made a promise to myself right then and there, that no matter how tired I was, or no matter what was going on in our lives, Cristiano would also have the life he deserves. Both of my children will get the very best of me . Always. That is something I have control over. I promise to always find ways to make them both feel special. To show I love them and that each of the milestones they meet are equally important. I promise to not overlook anything big or small. I promise to make life fun even when it gets heavy. I want them to know that when we have each other, we have it all… and when we have faith in God and His plan, we will never be left behind.
She is progressing and growing and thriving. We will continue to expect the unexpected. We will continue to work hard with her and show her that she is absolutely perfect…she is Perfectly Ashlynn. We have a long road ahead of us, filled with hours of therapy (play sessions), doctor visits, and evaluations. But let’s not forget the many celebrations we will have as she conquers milestones, big and small!
