The Great Balancing Act

The Great Balancing Act

close-up-stones-flowers-green-wallpaper-previewBal.anc.ing act – an action or activity that requires a delicate balance between different situations or requirements.

When it comes to having time to do things, I always feel like the grass is greener.
Sometimes, I’ll see other moms and for example, I’ll think to myself: “Wow! She has three kids, two dogs, looks great, they all look clean, and she’s happy!  How does she do that??!” I’ve even been asked, “Where do you find the time to get all of that done??” Truth of the matter, there are a lot of things that I never get to. I have learned to create a balance that works, (on occasion) with me and my family. I say “on occasion” because I don’t necessarily have it down to a science, but I can say we still manage to find time to enjoy the things that make us happy and keep us ticking! I hope my suggestions will help you get it all, (mostly) done and keep you smiling at the same time!

I have been both a full-time, working mom, and a full-time stay -at -home mom and I can assure you neither is easier than the other. Both have their major challenges. Well, maybe the fact that you don’t have to watch Kipper the Dog on repeat when you go into work might make things a tad bit easier 🙂 But either way, if you let it, it’s extremely easy to get overwhelmed by the fact that you feel like you don’t have enough time. Time to spend with your children, time to clean the house, time to keep up with the laundry, time to even go get your nails done or do something nice for yourself. And of course, the time to work out.

It’s a balancing act. Some of you have perfected this technique better than others. Some of you realize that you need some help!  By the way, if anyone wants to be a live -in nanny for me – for free- please let me know! But, nonetheless it absolutely can be done. It does take some effort, of course, but there are ways that you can get back to you in such a busy chaotic “Mom world.” It comes along with the idea being kind to yourself. Giving yourself a much needed mom-break… For everyone’s sanity!

The first thing that is absolutely crucial in getting it all happily done is planning ahead. I actually stay up late at night, when it’s actually quiet, and plan out my whole week; sometimes even a whole month. I completely understand things come up at the last minute and I think that’s where flexability comes in.

 Don’t forget about you! If I’m going to be completely honest with you, it’s those times that I’m able to do small things for myself that I feel most energetic, most happy, and most content. So why not work those things into your schedule? Don’t you deserve a minute or two? But you also have to know your limits. Sometimes you have to say no to things. Which is something I’ve still been working on! I’m one of those types of people that says “Yes, I’ll be there!   Sure, I’ll come!” And then think to myself, “Oh wait, I have three things going on that day. And I still don’t have a babysitter!”

Life has never been more complex than it is now for my family. Ever since we came home from the NICU, we have been busy nonstop. Ashlynn is in physical therapy 4 to 5 days a week, Cristiano is not yet in school. And, sometimes I like to work still! Talk about planning ahead. That list doesn’t even include extracurricular activities, volunteer time, spending time with friends or family, or even a few minutes for alone time to do something I enjoy. (Yes, you’re allowed to do that!)

As mothers, it’s very important that we take care of ourselves both mentally and physically. I can speak from experience when I say there are days when I put myself absolutely last so my kids look adorable, clean, and cute.  I’ll have on a sweatshirt and jeans that I’ve probably been wearing for two days straight. But I can’t stress to you how important I feel it is to get dressed up and show up. Now I don’t mean full face of make up and lashes … clean clothes will do just fine! 😂 As frequently as possible, I wake up before the kids do to wash my face, brush my teeth. put on clean clothes, and get ready for my day. It’s as much a part mental preparation as it is physical preparation. The days I feel sluggish, the days I feel like not doing anything, are the days that I don’t get up with the mind set “I’m ready to go.” Please remember you are also allowed to have lazy days!

In finding a happy balance in your life, there is no right or wrong.  Create a situation that works for you and your family. It’s always great to get advice on what works for others, but, at the end of the day it has to work for you!  What makes YOU happy? What keeps YOUR family running smoothly? I am guilty of this, but I think as moms we listen to those that offer their opinions when no one asks them. Block out that noise. Who cares if your priorities are different from the Jonses? Who cares if your kids aren’t on a tight schedule, or ate a cupcake after 7pm. You’re not a bad mom. And if you get judged for that, then shame on them. Moms that don’t support other moms have so much to learn still. It’s a reflection on them and their current state of mind. (Which can always change btw!)And if you do have your kids moving like clockwork- it’s good you found something that works! Point is – DO YOU!

When I was a first-time mom, things like that bothered me…  this second time around, I honestly could care less what time things happen. As long as I can keep my scheduling perspective, my sanity, and my husband and kids happy, I feel like I had a successful day!

Speaking of priorities. What are your priorities? Make a list of your priorities and make sure those things come first. For me, my husband and kids always come first; everything else follows. I always like to make sure that I have some time to do my writing, or volunteer work. Maybe do dinner with a friend, or work out. Why? Because they make ME happy!! I am a true believer that a happy mommy creates a happy home.

Another helpful suggestion? Pick your tribe wisely. There is absolutely no time in your busy to-do list for mama drama! I have found a group of moms that are extremely supportive of each other. momsWe all do things differently, but support each other in the things we choose to do with our lives and our families. I have one friend who is an actress and brings her daughter to her rehearsals and plays. How fun is that!? I have one friend who is a full-time working mom boss and manages her 3 kids, under the age of 3 beautifully! I have another Mom who prides herself in taking her child somewhere new every single Saturday. I love that!  Another one is a pastor of a church and has 3 kids as well! As you can see, we are all completely different. Diversity is a beautiful thing for me.  Each of them bring something completely new to my life and my perspective. I am so unbelievably thankful for them and their condition-less support.

My last piece of advice, which I feel is most important – Focus on the positive!! This idea has never been more important to me personally than it has been this year. We’ve had some pretty tough stuff thrown our way and I have to say, my husband and I have remained, for the most part, on the up. We have so much to be thankful for…And those are the things we choose to focus on.
In the beginning of our tough stuff, as silly as this sounds, I actually made a list for myself. When I found myself creeping to “the Darkside” I would pull out this list of 10 things that were positive in my life and immediately after reading that list, I felt better. It may sound silly to some of you, but I can honestly tell you it really has worked!

So maybe you’re seeing a theme here: you have to “DO YOU!” You have to find things that make YOU happy and able to function in a positive state of mind. No one should ever tell you how to “Mom.” What they should be telling you is how to find your happy so you can be the best you possible.

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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.

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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.

I Loved You First

I Loved You First

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“The moment a child is born, the mother is also born. She never existed before. The woman existed, but the mother, never. A mother is something absolutely new.”

– Osho

     In my younger years, I was never really the type of woman that wanted to have children. I was never good with babies and I sure as heck didn’t like to baby sit! They cried too much! They made me nervous. But, when we had our son, things changed. He became my world… and my world became brighter. God never surprises me; He knows exactly what we need… and when we need it. I cannot thank him enough.

I’ll never forget – after 17 hours of labor and three hours of pushing – our perfect little baby boy entered the world. They placed him on my chest and what happened next, my husband and I will never forget. He actually lifted his head, looked at his daddy, looked at me, and then snuggled back down and fell asleep. I will never forget that moment as long as I live. It was so perfect and so special. I wouldn’t say he was the easiest of babies. In fact, we pretty much didn’t sleep for a full year! Maybe more! Who am I kidding…he still sleeps with me! (I secretly love it). We actually thought he was colicky. I can remember being up late researching sleep experts and buying anything and everything that promised to work for a sleepless child! I remember talking to my boss’s wife one night- she was talking about how she missed the infant stage. She then said something that completely changed my perspective. I was telling her how we pretty much have a baby that hates sleeping at night. She then said, “Yeah, but isn’t it so amazing at the same time? The whole world is quiet and it’s just you and him. One day you will wish you had those moments back. It’s such a short time in the whole big scheme of things. Take it all in and enjoy it. Those are moments you will never get back.”  And she was absolutely right. I had been thinking about it all wrong. Yes, I was tired, but so what… I was up with my beautiful baby boy… who needed me. I was his whole world. I started to look forward to our little late night sessions. I think as I got more relaxed, he did too. Him waking up every two hours eventually spread to 3, 4, 5… and she was right, as Cristi got older, I missed the time when it was just him and I – while the whole world slept.

cristi3 (1)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.

We are so lucky to have family that helps me with Cristiano on days when I have to be in class with Ashlynn. Is it ideal for me to be away from one of my kids – absolutely not. But, I equate it to being a working mom. It’s just that now my job has become “mommy PT!”  It’s also the way you choose to look at it. Ashlynn’s play session would be no different than the “mommy and me” classes I used to take Cristiano to when he was 4 months old. One of the training facilities we visit is great because I can bring Cristiano along and he can play while we work. It’s like one big playground for him. The other one, unfortunately is for therapy children only. He doesn’t quite understand the reason for the division yet. I kind of love that. He sees absolutely nothing different about the kids in Ashlynn’s class. When we were in the NICU, they had a family play center for children that were admitted to the children’s hospital.

cristiblog (1)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.

cristi2 (1)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.

To my Cristiano:
I am proud of you every single day. You give me so many reasons to smile. It is because of you I have become the person I am today. You are too young to understand any of this, but one day, when you read this please know how “special” you are to me. How you made me want to be the very best version I possibly could be. On days when I wanted to cry, seeing you was my only refuge. Or how I hold your little hand when you are asleep.

You are so unbelievably loved. I thank God every single day for you and the blessing you are to my life. I will never get tired of being there for you. Things may not always be easy, but know that I always love you with all that I am… and that I loved you first.

Love,

Mommy

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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.”

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***

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.

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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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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.

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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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