Pain For Progress

Pain For Progress

blkandwhitePain 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.

therapyIf 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.

 

“I’m Sorry”

“I’m Sorry”

It’s ok. I know the news can be shocking.

I know you might not know what to say.

I know what you must be thinking… only because we thought it too.

What started out as a letter telling you what NOT to say, turned into a letter about why it’s ok to say exactly how you feel.

***

I know there are many parents that get offended when you say “I am sorry” for their child’s diagnosis. Me, sometimes, being one of them. Depending on my mood, and if my toddler is cooperating that day. For the most part, I really don’t mind because I can understand where you are coming from. I have seen post after post with directions on things to say to parents of special-needs kids. Posts on things not to say. When to say them. Who to say them to. What color to wear when you talk to them… ok so I haven’t seen that one, but you get the idea.  If I’m going to be completely honest here, I was sorry at first too. I was sorry to hear the news from the doctors.  I was sorry that our little girl spent the first 35 days of her life in a sterile hospital. I was sorry she was being fed from a tube. I was sorry that she had to be a fighter. I was sorry that I thought I was to blame for this happening to her.

So why can’t you be sorry as well?

No parent wants to hear another child has been born into less-than-perfect circumstances. I think when we hear something has happened we begin to empathize with them and we put ourselves in their shoes. It’s only natural. So we may say things that would help us. Or we may not even say anything at all. We all cope and process so differently. In cases like getting life-changing news there, unfortunately, is not one response that fits all. There are no rules. And until you are in a situation like this you have no clue how you would handle it. So we can only imagine. And that is why it’s ok to say how you feel.  It’s ok to ask questions. It’s ok to be sorry.

But here’s why you don’t need to be sorry…for long.

She is alive! She is happy. She is so LOVED. She is thriving and growing and learning! She made it through a very troubled pregnancy when we were told she may not. She made it through that 35 day NICU stay. She survived a choking episode when she was learning how to eat. She made it to today. So now, we wake up and literally celebrate each and every single day. Her being with us is a celebration. She is our princess.  She will progress and she will be ok. More than OK.

Leopard (1)Most importantly, WE are ok.

So now what happens? Well, physical therapy. And more physical therapy… We plan to take full advantage of this very early diagnosis and try to encourage as much neuroplasticity as possible! That is, we encourage the brain to create new pathways that may have been originally been lost from a brain injury like Cerebral Palsy. Did you know the brain can do that?!? The brain can literally “rewire” itself in certain circumstances. It’s absolutely amazing. Hence, the extensive daily physical therapy. It, of course, doesn’t happen overnight unfortunately.  It will take hard work from Ashlynn -repetition and patience – but it will happen.

Cerebral Palsy is a blanket term. Each case is as unique as the children and adults who have had this brain injury. It most likely happens while a baby is in the womb, as was Ashlynn’s case. It is the result of damage to the developing brain. There are several possible causes. We have been asked many times if we know what caused this for Ashlynn. The answer? Maybe??  It can manifest as “barely noticeable” to “extreme disability.”  It doesn’t progress, but can change. It can effect one arm or leg, to both arms and/ or both legs. And, as I have learned, there is no “look” to CP. Someone with CP may be walking right next to you, down the street, and you would never know!  “But, she looks so normal!”  That’s another one of my favorites…It’s ok if you have said that. I think so too 😉

Ashlynn is still very young, so we don’t know exactly where she falls on the CP spectrum. So the plan for now? We put our heads down and work, work, work, work, work! (cue Rihanna). We celebrate the small victories and continue to hope and pray for the big ones! We want nothing more for you all to be a part of that! It’s so much more fun to celebrate than to carry the weight of sorrow.

So back to what I was saying before…maybe knowing what we know will ease your minds a little bit. And after processing the initial shock of the news, I hope that you see you don’t need to be sorry for her or us. But instead offer your support and encouragement. For us, there is nothing wrong that you can say. We just love to know that you care enough to say something. Trust me when I say I have said enough awkward things in my life to write a book! And for those of you who personally know my husband…. Well…. Lol.  At least he means well! (I’m kidding, Christopher! I love you!) This is a journey and there is no map on how to navigate it. We will all learn as we go, together. So it’s OK to say how you feel and ask the questions you may have. We are here for you, as you have been there for us.

Acknowledge the Storm, but Celebrate the Rainbow

Acknowledge the Storm, but Celebrate the Rainbow

“It is understood that the beauty of a rainbow does not negate the ravages of the storm; when a rainbow appears, it does not mean that the storm did not happen or that we are not still dealing with its aftermath. It means that something beautiful and full of light has appeared in the midst of the darkness and clouds. Storm clouds may still hover, but the rainbow provides counterbalance or color, energy and hope.”

ashlynnpurple (1)

***

We didn’t know a head ultrasound was on her agenda for the day. But we were used to all the hospital visitors from all different parts of the hospital coming and going, taking the samples they needed from her, not to be seen again. So it wasn’t alarming to us they were going to come in for a head ultrasound (U/S). Poor thing was only 7 days old- but it was just one more thing to check off our list. The whole scan lasted about 15 mins in total and that was it. She barely even woke up for it. Easy and done.

It was early morning and we were getting ready for our daily trek up to the NICU. We usually called around 8:30 am for our “overnight update.” We picked 8:30 because that’s when the Attendings did their rounds in Ashlynn’s part of the NICU.  If we timed it just right, we were able to get the overnight update as well as get informed of what else was happening for the rest of her day (little tricks we learned while staying at the NICU Hotel). Most of the time we would call and would get “eventless” updates. It was mostly the same things: “She ate through her tube, she pooped, and she slept pretty well! See you soon, Mom and Dad!” Not necessarily ground-breaking news, but we were more than Ok with that! It’s funny how when I look back now- I realize I was almost annoyed with the “eventless” updates. Silly me…

One day in particular we were put on hold when we called in. The NICU Nurse Practitioner got on the phone. I could already tell I didn’t like this conversation. I had began to wish it was one of those “eventless” updates.  Ashlynn was about 10 days old at the time and we had yet to get back her head U/S results. I seemed to remember that right at that very moment. She began by saying what they look for when they do head ultra sounds, evidence of bleeding, stroke, trauma, brain damage etc. My stomach dropped. I knew she wouldn’t be telling me any of this if it wasn’t relevant to our conversation. I honestly can’t remember much of that conversation. I remember feeling like she was speaking a different language.  I didn’t  know what any of it meant. All I took away from this conversation was three letters – PVL. I think Chris could tell by my face that I either was about to faint or throw up. I silently handed the phone to him and the most fear and panic I have ever felt in my entire life began to rush over me. Everything was in complete slow motion. And it stayed that way for a few days. We were told that they had found some “concerning areas” on Ashlynn’s brain scan but they wanted to do the head U/S again and then, most likely an MRI after she was 14 days old. They wanted a few more days to see if the results would be more clear. “A few more days?!?!” We had to go a few more days with this half-terrible news??? What I can tell you is this, in our whole entire journey those first few days were by far the worst days of my life. I am not sure anything will ever come close to the sadness I felt. I was completely numb, heartbroken, and devastated at the thought of what all of this could mean.  We finally crawled to day 13. They completed the final head U/S and MRI as promised.  We prayed that this was all a mistake; that there was an error of some kind. I think they even did the scans a day early for us. I think they could just see it in us; that not-knowing was killing us and our spirit.

At a very young 13 days old, it was confirmed that our sweet baby girl was diagnosed with Periventricular Leukomalacia (PVL). Basically, somehow our angel acquired brain damage in the occipital area of her brain. It was the most painful news I have ever received. There was no escape, no relief, no peace. It hurt and it hurt bad. I literally felt physical pain for the first few days. My body was shutting down. Tears would fall uncontrollably from my eyes without notice. I was absolutely broken in every sense of the word. My world was black. I had to fight to breathe. I had to fight to just be.

No one knows how her trauma happened – believe me, we asked. Many times. They do think it may have happened in utero around week 28-30. What did this mean?? No one had a clue. They did know that where the damage was located that she could possibly be blind or may never walk…and it was “very bad”- I believe those were the words one Attending used to described the damage to us!! And not in the most graceful of ways. A lot of “things” come along with having PVL and she was far too young to see where we were headed.  We were told: “We have to just wait and see.”  Cerebral Palsy is a common side diagnosis that may accompany PVL. So, knowing that her motor skills would most likely be affected, they began physical therapy at two weeks old right there in her little NICU bed.

the Lord (1)

As I had said before, the first couple of weeks were awful. We barely had any concrete answers; we didn’t know where or how or IF this would manifest. And, worst of all, we still couldn’t bring her home. I think that had to be the hardest thing for us. All we wanted to do was love her, protect her, and have her home. We obviously went through a lot of emotions. A lot of downs… but, eventually over the next three weeks, those downs started to turn into ups. As the storm began to clear, we were able to see.  At the end of the day, we had a beautiful baby girl, a brand new addition to our family, and we chose to celebrate that. We began to see the light in a very dark place that we created. As our family, church family, and close friends began to surround us and cover us- it started to get easier to breathe again. To not feel so crappy 100% of the time. Little by little, we began to have more good days than bad. We both decided that we can not dwell on the things that we can not change. We both decided that we can not stay in that dark place. Why?? Because there was so much beauty all around us!! Our baby girl was alive!!  She was going to be ok and we had each other. We were blessed with two beautiful children that needed a happy mommy and daddy. WE WERE CHOSEN to be their parents.

We decided from that moment on, to release it all to God. All the fear, all the worry, all the anxiety. That’s not to say we don’t worry- of course we do, that’s what parents do. It’s more so, we decided not to worry about where our journey was going to take us. We have no doubt that God is with us every single step of the way, and He always will be. By the time we left the NICU, we were ready to take on what ever came our way. We did end up getting that Cerebral Palsy diagnosis I mentioned earlier, but that name has no power over us (anymore).   As Ashlynn gets older, we’ve continued to see how amazing she is. How strong and beautiful she is. How loving and happy she is. She is still on track with her motor skills and she most definitely is not blind. God is so goodashlynn 5 mo (1) 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!

So I leave you with this advice. Hug your babies tonight…and your loved ones. Live each day IN the moment.  Pick your battles and see the big picture of life. Celebrate your health and the things we may all take for granted- like walking with ease! Run that extra mile. Be kind to people- because most people don’t have blogs to share what’s going on with them behind the scenes. Know that God has a plan for you- he will never give you anything you can’t handle.  I absolutely don’t want you to feel sorry for us, or for Ashlynn…but instead empower her. Support her and others just like her. Root them on. Give them a smile and realize that someone loves them with all their heart and soul. Somebody prayed for this child and loves them exactly the way they are

and now the real journey begins and we’ve got this…

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Read Next: The Arrival of Our Wait-and-See Day

God Lives In The NICU

God Lives In The NICU

I don’t think anything can prepare you for seeing your tiny angel laying in a plastic bassinet connected to an unlimited amount of wires and cords…I hated those cords. I hated the noises the machines made. I hated all the sounds of the Neonatal Intensive Care Unit (NICU). I hated the fact that I had to ask a stranger for permission to hold my beautiful baby girl. I hated that I was scared to hold her. To this day, I still hate seeing the nursing bottles I had to take back and forth from the hospital to our home. I can’t even stand to see the “kangaroo care” shirt that I wore to “bond” with my baby. I hated seeing the NICU phone number pop up on my screen when I wasn’t there.I hated that I couldn’t be there as much as I wanted to be. But… my daughter is ALIVE because of the NICU.  The NICU is one of the most horrible and beautiful places I have ever been. There is no doubt in my mind that God lives in the NICU… and the nurses are his angels.

***

Ashlynn was born on August 27th, 2018 at 10:30 pm. From the time I went into labor to the time she was born took only two hours and three pushes. The room was filled with two teams of doctors, one for me, and one for her. In total, there were probably 15 people in our room; not exactly what you imagine when you think of bringing your beautiful child into this world.  They had warned me that when she was born, I most likely wouldn’t be able to hold her.  That broke my heart, but I understood. Again, I wasn’t worried about me; it was all about her. I remember thinking I just want to hear her cry. Please God let me hear her sweet little cry. As she was born, I caught a quick glimpse of her as they took her into her corner of the room where her team was on stand-by ready to get to work. I couldn’t see what they were doing. I quickly sat up to try and see, but I couldn’t see a thing. I didn’t hear a sound. I kept asking, “Is she ok?? Do you know if she is ok?? Is she breathing??” Finally, a few gurgles and a sweet little cry filled the room! I began to cry. “Thank you, God!”  They began to rush her out of the room. I quickly asked, “Can I please hold her??!” They looked at the doctor and she said “Very quickly.” They handed her over to me. She was absolutely perfect. It was hard to see her through all my tears. We were able to get a quick picture before they took her again. She was finally here! Only by the grace of God.

We spent 35 long days in the NICU. It could have been much worse; I realize that now. It was a really hard time for so many reasons. I felt like I was on auto pilot. Same routine every single day. It never got easier for me. Actually as time went on, it got much harder. Morale got lower. One thing that always remained constant was my trust in God and His plan for our Ashlynn. I would play music for her from church, sing to her, talk to her, play dress up with her by bringing in new hats and bows, pray with her. One night, I even went and watched Miss America with her! I would even FaceTime with our little guy so he could see his baby sister.

I tried to make the best of a tough situation. I always tried my best to keep everyone’s spirits up. One of the hardest things about this whole thing was leaving her every single night. Handing her over to the nurse and walking out the door. For 35 days, I had to do that. For 35 days, I cried the whole way home.  I sit here and cry as I write this. It was soul crushing…it still is.  I wasn’t able to stay with her over night – my little guy needed me too!  He missed his mommy and was having a really hard time without me. I felt like I had to choose between being there for one or the other; it was an awful decision to have to make. Plus add in exhaustion, stress… oh, and I just gave birth! There was no down time for me. I was released from the hospital two days after I had Ashlynn, and on the third day I was right back there beginning my mommy-of-a-preemie journey. Looking back, I don’t think I ever really gave myself time to process the magnitude of what was happening. I didn’t give myself that option. I just kept going. Here we are, six months later and I’m just now able to talk about it all openly.

You may be sitting here reading this and thinking, “ok, so Ashlynn was early and spent time in the NICU…that’s really sad, but what’s the big deal??” And you’re right. There is more to the story and our journey. And it’s not all heavy and sad. There is so much good and happy times to share as well! What I haven’t shared up to this point is what we learned about Ashlynn during her NICU stay. As if the tests we faced up to this point weren’t enough, we were about to get life-changing news. We share because what we have gone through, others have too, and will continue to go through. If me talking about our journey helps anyone, (even if it’s just me) then it’s all worth it.  People deal with things in so many different ways and this is mine.  I’m not afraid to share our truth. I most certainly am not afraid to be honest and open. There is healing in finding community. There is healing and strength through the grace of God. There is healing in finding love and support from others going through difficult times and happy times… real times.

And that is what my blog is all about.

I would like to invite you on our journey as we learned the name of the mountain assigned to us (and I promise it’s not ALL tough stuff!) You ready?

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Dancing In The Rain

It’s easy to be a happy person and give praise to God when things are going great in your life. The sun is shining, the birds are chirping. Nordstrom is having 40% off of EVERYTHING!! Things fall perfectly into place for you- “Thank you God for such a beautiful, easy time. Whoo hoo! My. Life. Is. AWESOMEEEE!!”

Then… the clouds start to slowly roll in. It gets a little bit colder and darker. People run away and scatter to take cover. Your storm arrives. There you are smack dab in the middle of a terrible storm getting soaking wet. Things that always came easy to you are a little bit harder in the rain. It takes so much effort to just smile..to be happy…to laugh. To be the amazing mom you were just a few days earlier. The anxiety and not knowing when or if the sun will ever come out is enough to send you into a dark place of despair.  It’s in these times we have to make a choice. We can allow ourselves to be swept away by the strong winds or we can anchor ourselves and learn to dance in the rain…Keeping in mind that storms never last forever.

***

We were sent home from the ER on a Saturday night. By Wednesday we still had no signs that we had lost our little peanut. We went to our follow-up appointment unsure of what to expect. We had been praying that our little one was hanging on, but we also knew that His plans may not always align with ours. By the end of the visit we had discovered that I had a very large fibroid preventing my cervix from closing around our 8 week-old fighter. We were told we needed to have it removed that day or we would lose the baby. They also told us that even with the surgery we would have a 50/50 chance of the baby making it. We decided to go ahead with the procedure. I was horrified but knew it was the right thing to do. Due to the fact we wanted to have the least amount of interference to the pregnancy, rather than being “put under,” we had to use only local anesthesia.  Translation: I would have to be awake for the procedure and I would possibly feel some “discomfort.” At the time, I wasn’t worried about myself. When we had found out that our little angel had stayed with us this whole time, I knew this was a very special baby. Without getting into too many details, the surgery was awful, but went amazing. They were confident it was a success, but we wouldn’t know for sure until my follow up ultrasound 4 days later.

I didn’t realize in all the chaos of the situation, that it wasn’t just “any” Wednesday, but it was in fact “Ash Wednesday.” A day that would always have tremendous sentimental meaning for us. It was the day that our sweet little baby was saved. We decided if we were going to have a girl, her name would be Ashlynn Grace.

The whole pregnancy was a challenge in every sense of the word. I had to fight for my joy. I had to fight for my health. I had to fight for my mental well-being. For the first time in my entire life, I found myself in a really dark place. A place that literally had me on my knees begging God to help me. I was so sick that I couldn’t even take care of my son. What kind of parent was I that I couldn’t even take care of my son!? I  began to question my abilities as a mother. As a wife. As a friend. I felt so alone and isolated, even though I wasn’t.

There were days when all I could do was get up to go to the bathroom.  I was literally trapped in a cage of physical illness and it was debilitating.  I was hospitalized twice for extreme morning sickness (hyperemesis) and I had tried a number of anti-nausea medications just to be able to function. As time went on and the weeks went by I began to feel better. I was able to leave the house here and there, mostly for church and doctor appointments, but still it was progress! To make things just a little bit harder I was also placed on modified bed rest for the last half of my pregnancy. bump

It was so hard with a toddler but we made it work. I had made up my mind to enjoy what I could of this gift of pregnancy. We took things day by day. We prayed and looked for the sliver lining in every cloud that hung over us. We knew God was with us and that He would help us endure no matter what may come our way.

At 29 weeks I began to have inconsistent contractions. Strong enough to send us to the ER. I was sent home after they calmed down, only to return a few days later.

As a mommy you begin to learn the movement patterns of your little one. I knew she was always very active around 5:30 am. I knew this because she would wake me up- almost like clock work every day! It was something I began to look forward to. On this particular day I slept until 7. I woke up thinking “Hmm, that’s weird. I don’t feel her.” I tried all the tricks, juice, cold water, laying on my side… and nothing. I went into work that day thinking. “Maybe she was just tired?” As the day went on,  11:30 am rolls around and still nothing. At this point I began to panic. My boss told me to go straight to the ER. So I called my doctor and in I went. Again. I almost felt silly, but I really felt like something wasn’t right. They hooked me up to the monitor right away.  We watched the ultra sound monitor for what seemed like hours with just a few movements here and there. I remember it like it was yesterday. I play it over and over in my head. I will never forget what it was like to see my motionless baby on the screen. How my heart dropped when I saw the faces of the doctors coming in the room.  They began to take precautions for an early arrival. Rounds of steroids for her lungs. Magnesium for her brain development. I eventually was sent home and told to take it easy after hours of observation. Our goal, obviously, was to keep her in as long as we possibly could, but God had much different plans for us yet again. At 31 weeks my water broke, and in the hospital I stayed until we met our sweet baby girl a week later.

Read Next: God Lives In The NICU

The Arrival of Our “Wait-and-See” Day

The Arrival of Our “Wait-and-See” Day
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After receiving the results of Ashlynn’s head ultrasound at 2 weeks old, Chris and I knew there was a possibility of a Cerebral Palsy diagnosis.  Of course we did what any parent does when we want more info… headed straight to Google to research “PVL”, which was the only diagnosis we were given at that time. It was only a matter of minutes before we picked up on the statistically significant correlation between the two.

Ashlynn never looked or moved differently to our untrained eyes in the beginning. She moved both of her arms and both of her legs… a lot. She followed our faces when we spoke to her. She even started babbling and cooing much earlier than our first. If it wasn’t for the fact that we saw her MRI results with our own eyes, we might have never suspected anything was wrong!

We would come to understand it wasn’t so much that she wasn’t moving her arms and legs- but rather, how she was moving them.

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The day was finally upon us. The “wait-and- see” day.  Ashlynn’s 6-months follow-up.  We had spent 35 days in the NICU. I remember in those months prior, I had been able to calm my anxious mind by saying “Let’s take this day by day.  There’s no sense in worrying right now!   Six months is a long time away.  Anything is possible!”  (All the while Chris and I would pray for her miracle; pray that the doctors would say that they no longer saw any sign of the brain damage).  Fastest 6 months of my life.  It was actually Valentine’s Day. I had always loved that day growing up. It reminded me of my February birthday. It also reminded me of the beautifully-wrapped gifts my mom and dad would have waiting for us on that day when we got home from school. I loved everything about that day- the pink and red, the hearts everywhere. I always made it a point to do something fun on that day. But this year, Valentine’s Day was different.  Very different.

We woke up extremely early that day. We were scheduled to meet with her original Physical Therapist from the hospital that had worked with her in the NICU. She had done the initial assessment and it was customary to do a follow-up visit 6 months later to check her progress.  This appointment would help set the long –term course of action.  I knew it was a big day.  I dressed her super cute in a white onesie with tiny bright pink hearts and the biggest pink bow I could find.  She looked like a little baby doll. As if “how cute she looked” might positively skew her results.  I barely slept the night before. I was a nervous wreck.  I knew that this would be a very important day for her, and for us.  When I woke up, I felt like I was taking my board exam all over again.  I was full of anxiety, worry… but also, strangely enough, full of excitement.  Excitement that we would at least have some sort of direction; some answers about what definitively lied ahead.  I was pretty much all over the place when it came to my emotions.  I thought about all the possible outcomes the whole week leading up to this day.  Actually that’s a lie.  I thought about all the possible outcomes every single day since we received the news of her MRI results 6 months prior. I went to dark places, to happy places. To places of mild disability and all the way to severe motor difficulties. I even visited the place of complete healing.

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We pretty much drove in complete silence the whole way.  Except for the small talk one of us would try to force out.  My mind was racing a mile a minute.  I took refuge in the confidence I had in our beautiful Ashlynn and her abilities.  I also knew that no matter what news we received, God had our plan and our journey already written for us. It was now time to see what our path would look like.

The evaluation seemed to have gone well, I thought. They laid her on a brightly colored mat on the floor and watched her move naturally.  She kicked, and squirmed, and smiled. They did this for about 20 minutes while they videotaped her.  They did a few more motor skills tests before they discussed her results for the day.  I feel like any time you get news you don’t like, it comes in slow motion.  Our PT would go on to explain that Ashlynn lacked “fidgety” movements.  Those are movements that typical babies do organically.  When a baby of Ashlynn’s age demonstrates a lack of these movements, 2 out of 3 times this will be predictive of a “motor difficulty.”  That’s a fancy, non-committal way of indicating a very likely Cerebral Palsy diagnosis.  She told us that she was not able to give an official diagnosis, but she wanted to introduce us to a developmental pediatrician for further evaluation a week later.  My heart sank.  And once again, the breath was taken right from out of my chest.  I knew what that meant.  I knew why. I knew what was coming next.  Exactly what I had prayed for to not happen was playing out right before my eyes.

My prayers changed that night.  I prayed for understanding.  I prayed for comfort.  I prayed for strength.

That Valentine’s night was hard. I felt defeated. I felt exhausted. The celebration I had hopped for didn’t happen. With morale down, we settled for an easy dinner and took our son to a McDonald’s PlayPlace and we sat in silence as we watched him innocently play not having a clue about how our lives were about to change.

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A Mom has a heart of steel when it comes to her babies. She would go to war for them. She would jump in harm’s way to protect them. She would go to great lengths to let them know how, no matter what- they are perfect in every way.

That week leading up to our next appointment, I said “enough of me being sad.”  It was time to go to battle.  It was time to accept what was in front of us and give it all we had.  We had received blow after blow, time after time.  We have felt real pain; gut-wrenching pain that only a parent who has received “a diagnosis” for their child knows.  That saying about how “when life gets too tough to stand… kneel” has never had a more true meaning.  I wasn’t on my knees out of weakness, but rather I was there still giving thanks to God for helping me get back up each and every single time.

THE day finally arrived.  It had been a long time coming.  We were ready.

The room was filled with 4 PT professionals and our new developmental doctor. They laid her on the mat and began.  I have never been more proud of my baby girl than I was on that day.  She literally gave it her all.  She was “Perfectly Ashlynn.”  She did the very best I knew she could.  She didn’t cry or fuss. She bravely went from task to task.  I smiled watching her with tremendous pride.  But, I also knew why we were there.  The evaluation came to an end. It was time.

He started off by telling us all the things he loved about her. He was kind and gentle in his delivery.  Her awareness, her eye contact, her ability to interact socially and her smiles… and then it came. “What I believe we are dealing with is cerebral palsy.  I am going to go ahead and diagnose her with that.”  There was much more said after that, but I don’t really recall it.  After he was done talking, I let out a breath and I calmly said, “OK.” And with that all the weight I had been carrying for the last 6 months was lifted. The fear of getting a diagnosis no longer had power over me. That name no longer had power over me.  It was here and I had accepted it.  I didn’t cry. I didn’t scream or fall on the ground like I thought I would. I was ready.  Every situation, every heart break, and every experience I have lived up to this point had prepared me for that very moment.

As I held Ashlynn during the rest of the conversation that followed, she looked up at me, and I down at her.  She gave me the sweetest smile, and as our eyes locked for that moment I thought – “You’re absolutely right, baby girl… we’ve got this.”

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