Saturday, December 3, 2016


Hi friends! 

I am a really good secret keeper but I think along with knowing the gender the most exciting part for me is picking out your baby's name. Boy names were so easy for us (maybe because we already had a boy) but girl names were an entirely different story. We wanted something different and unique. Something that fit this little angel girl and felt right. So her name will be Landree Olivia Marocco. 

The story behind her name is so funny actually, I always loved the name Landry (I'm a HUGE Friday Night Lights fan) but I always just associated it with a boy because that show was the only time I had heard that name. Then, one night my husband and I were watching tv, one show ended on the channel I was watching and this show called Toddlers and Tiaras came on. So of course those type of shows are a total guilty pleasure and we some how started watching. The cutest little girl was on the show, she was super sassy and with her hands on her hips she looked at the camera and said, 
"Hi my name is Landree!" 

As soon as my husband and I heard her name we both said "thats such a cute name for a girl!". And that was it. We knew it was the right name for our baby girl. Its so silly but now I watch that show all the time, its just so addicting haha but don't worry, our Landree will NOT be doing child pageants!

My husband and I are nick name people and love to shorten everyones name. We originally wanted to try to incorporate something to do with Jax into her name but we couldn't really find anything that felt right for us. We also know this baby is not only a gift from God but most certainly a gift from our Jax so we know she will be filled with him in so many ways because of that. In the ultrasound we had over the weekend she was sucking on her bottom lip which is something Jax always did, so we already know she will continually show us signs from her big brother.  We will probably call her Lo for short because of her initials. 

We can't wait to meet this little babe and I'm sure I'm going to be an emotional wreck that day! Who are we kidding? I'm an emotional wreck most days! haha! We started to buy stuff for her nursery which is so exciting but also makes me so anxious with everything we have been through. But we are choosing to trust in God and know that one day we will be holding her and cuddling her (in 5 months eeeeek!). Thank you guys so much for following along with us and for loving my two little angels like you do. We love you guys! 
xoxo, t. 

Saturday, November 12, 2016

One Miracle above me and One miracle inside me.

MAY 2017.

I never in my wildest dreams imagined I would be typing these words, never mind sharing this news with you all but Jaxon is going to be a big brother! It is such a crazy blessing I can't even begin to explain it. Keeping this a secret for the past two months has been so hard but we wanted to make sure that the baby was healthy before we told everyone. And yes I said it, THE BABY IS NIEMANN PICK FREE! I wish I could shout it from the rooftops because it was so nerve wrecking not knowing if this little nugget was healthy or not. 

You might be wondering how we know this but we had a test when I was 10 weeks called a CVS done to determine wether the baby had NPD or not. The test was painful and not fun at all but it was worth it for the peace of mind. We also were able to find out about any chromosomal abnormalities (everything was normal) and the gender. This baby has been prayed for so fiercely by my husband and I, we couldn't be feeling more blessed.

From the moment I found out I was pregnant I felt an overwhelming sense of peace which I can only describe as the Holy Spirit gently nudging me in knowing that He had this under control. It seems like waiting has been the story of my life but honestly it has taught me such patience. After two failed IVF transfers and Jaxons passing we have dealt with our fair share of heart break this year. We have been through so much and losing Jaxon was and is the hardest thing that I will ever go through. I miss him so much everyday and even with this amazing news that doesn't stop & never will. 

We found out we were pregnant on September 14, which is Jaxons birthday. If thats not a sign sent straight from our little angel, I don't know what is. I was dreading that day with every fiber of my being but in the midst of all the sadness/joy of that day I found out that our second little miracle baby was on its way. I was shocked and I remember sobbing and praying to God that this baby would heal some of the broken places in our lives. That this baby would be healthy and God answered our prayers. That day we sent three balloons up to heaven for Jax, two with words of love written from Mark and I and one that said "Jax, you're going to be a big brother in May!" 

As I let those balloons go up to the sky I knew in my heart that Jax already knows this baby. That he helped God handpick this little soul for our family and that he is spending all these nine months kissing and loving on this baby until we meet him/her earth side.

And when I say that Gods timing is perfect I don't simply mean that like the writing on a hallmark card to make you feel good, I say that with tears streaming down my face because it is the truth. He knows each breath we will take and he knew long ago that all the tears I wept over expanding our family would one day be wiped away and he would create this beautiful blessing. He would do it on His time, His way. At the beginning of the year we went through IVF to expand our family and was sure that was how we would have another baby but we conceived this baby completely naturally. I tell you this because its such an important part to the story and clearly shows how God will do things in His own time.

I don't understand why we had to lose our son. It will never make sense but thinking about never knowing Jax hurts me almost as much as losing him. I would have him in my life 1000x over even if it meant I had to say goodbye. Thats how deep my love goes for him, it stretches all the way to heaven and back. I believe deep in my heart that the day Jax went to heaven he picked out the perfect little soul for us and that he desperately wants us to be happy. 

I will raise this baby talking to him/her about Jax all the time. I want them to know how their big brother is always watching out for them and that he is always around even if you can't see him. I know that their sibling relationship will be different then most but I want this baby to know all about their amazing brother and how he changed our lives forever. 

I am so grateful for this blessing and also the blessing of my first baby. Jax made me a mommy and for that and SO many other reasons, him and I will forever be connected in the most special way. He has helped me have a different outlook on everything in my life and I am so lucky to be his mom forever! I can't wait to see how this next baby will change us as well and how they will shine a bright light into our family.

I hope that if you're going through something similar like we have/are going through you understand that I know your hurt. Our pain might be different, brokenness isn't the same as the person next to us but I can promise you this, you will be happy again one day. It will be accompanied by deep sadness and heart ache and it won't be easy but I promise your angel will give you reasons to smile. And though it will never ease the hurt of not having them and let me be perfectly clear when I say that no other baby can or will ever replace Jaxon, ever.

And if you are struggling to get pregnant please know that I know how much it hurts your heart when you see another pregnancy announcement because Ive been there. You are happy for that person but inside you're wondering where your baby is. There is nothing wrong with these feelings and they are completely natural. But try your best and fully honor the person because when its your turn you would want the same from them. I promise you, your baby is coming. I don't know if its 1 year, 1 month or 1 day from now or maybe 5 years from now but it will happen. Don't try to rush Gods timing. Its perfect and when you look back in the rear view mirror all your hurt from infertility and failed procedures will all make sense to you. Its hard to see it clearly now but one day you will and until then pray, pray hard and harder even when it seems pointless I promise you its not. Don't give up. 

xoxo, t.

^We bought this shirt for Jax after we found out we were pregnant from IVF in June but it ended up being a chemical pregnancy which made the pregnancy test read a false positive. But without that heart break we wouldn't have this amazing picture. 

Thursday, November 3, 2016

Cozy Fall Thermal

Hiiii Friends!

I just wanted to quickly share my feelings for a min here. I love that my blog can be a post with pictures about fashion but the context can be about something totally different. I don't think my blog should have to fit into a mold that other blogs do and that makes me happy, I hope it makes you want to visit often as well!

I think a lot of my life right now is about taking care of me. Which is super strange because after taking care of my medically fragile son for two years and it being 99% about him, its hard to make the switch into caring for yourself again. Ive been trying to find a balance of pushing myself to fully live life and giving myself a ton of grace with doing nothing at all. I feel weird to tell you the truth. I feel as though I haven't quite found my "thing" yet. The thing I am most passionate about doing day to day. For so long that was being a mother and still is but is hard to do without a child to care for. 

To be honest, it makes you feel purposeless. You go from being someones everything to one day and very abruptly that little person not needing you at all anymore. For me its different then a mom who sends their child to daycare for the first time or off to college, my baby will never again be held or need anything from me again on this earth. Its a soul crushing realization to come to but the smallest more mature part of me realizes that with not caring for Jaxon anymore here on earth also means that he is healed, he is happy and he is at peace in heaven. 

From the moment your child is placed in your arms you make every choice to make them happy and to care for them so I know it is beyond natural for me to feel as though life without Jax here on earth doesn't make sense because for me it doesn't. It probably never will. I will forever search for answers to why my son? But I also know one day, I will know the answer and I will get to hold my son again. I will get to live all my days in full happiness with God and thats something that makes being here on earth without Jax seem a little less painful.

Grief is the strangest feeling. Especially grieving for a child. Its a mixture of gut wrenching pain and physical/mental exhaustion. My days stem from clinging to any bit of him. Whether its a song on the radio, the smell of his clothes or casually and desperately bringing him up in every conversation just to hear his name aloud. Its a feeling that I can never really explain and a way of life I hope no one ever has to walk along side me in. It makes the most mundane tasks feel impossible and the shortest distance seem so far away. I never wanted to be here. I never wanted to have to close my eyes while grasping my sons pillow and placing it under my nose just to be able to smell him again because that is the only way I can physically feel close to him. 

Jaxon was the greatest friend I ever had, his soul was one that left lasting imprints around our home and always will. I can't walk into a room without feeling his presence. I will spend my days speaking of him and telling people about him because its the best way I know to share his love. Parents in grieving have an invisible cloak that they wear. Its a cloak made of the strongest of loves, the sweetest of smells and the most agonizing pain imaginable. It is one that is not seen to people who have not lost their child but is so obvious to all of us who have. I wear my cloak with pride because its one that shares of my story, my pain and more importantly represents the amazing life of my son. And even though I know most days its the heaviest garment to wear I know that because I wear it his life will continue to be one of great significance to not just me but others as well. 

"Know that where there is great pain, there is even greater love."
-scribbles + crumbs

xoxo, t. 

What I'm wearing:
THERMAL: Free People // UNDER SHIRT: Gunny Sack & Co. // JEANS: Paige Denim via Nordstrom Rack // BOOTIES: Target // BAG: Valentino // NECKLACE: Anthropologie & Tiffany + Co. // NAIL POLISH: OPI Miami Beet //

Thursday, October 20, 2016

Fall Plaid Dress.

What I'm wearing:
DRESS: Anthropologie Similar Dress  // BAG: Louis Vuitton // SHOES: Ps I Adore You //

Hey friends!
Gosh, its been so long since I did an outfit post. I feel like fashion definitely has taken a back seat in my life the past two years but its always been something that I love. Right now I'm actually in the process of cleaning my closet (monkey with hands over eyes emoji). Eventually I'm going to get my closet redone and make it easier to organize but for now I'm going to have to tackle that mess! Haha. 

Life has really been tough for me these past three months. But I'm really trying my best to continue doing things that are life giving to me. Its so strange to get up, get dressed and function everyday but I promised Jax that I would. I know there are days when I am going to crawl under the covers and not brush my teeth or shower all day but thats ok (and believe me when I say that happens a lot). People will always comment on how "strong" I am but I'm really not. I'm cut from the same cloth as everyone else but Jaxon just changed me, to the core. He made me a better person, a stronger woman and a more appreciative mom. 

There is a lot going on in the next couple of months. Last weekend we were in Denver, Colorado (which was so amazing). We had the best time, even though we wished we could have been there longer but other than that it was so awesome. It was such a healing experience for both my husband and I. Being able to hug, talk to and just be near people who knew our exact pain because their children also passed away from Niemann-Pick Disease Type A. I definitely had an emotional hangover Monday morning but I was so happy we went. 

We have a couple more personal things coming up that I can't really speak on (maybe one day) but please send some good vibes and prayers our way. Halloween is going to suck, sorry not sorry. Just being honest. We loved getting Jax all dressed up and so seeing other families trick or treating is going to be so HARD! Thanksgiving, the first holiday without Jax & I'm feeling sick to my stomach thinking about that day and how much my heart and arms will ache for him. Then, for Christmas/our wedding anniversary we will be going to Hawaii which we are so beyond excited. We always promised Jax that Mark and I would take a trip just the two of us and explore Hawaii so we are keeping that promise too. We also really didn't want to be here this Christmas, feeling like it will be WAY too much  and emotionally exhausting for us. Not having Jax here physically is nothing short of the worst thing ever but we are trying. Thank you for all the continued support for us in this very difficult time.

Ok, onto this outfit. This flannel dress is such a perfect way to transition into fall. The weather in New England has been more like Summer than Fall lately so this dress was perfect for a lunch date with one of my friends the other day. These booties I purchased last year but I will find similar ones for you guys. I also am going to link cheaper versions of everything in my outfit posts for those of you on a budget or those of you who want to expand your wardrobe without spending a fortune! I hope you all enjoy your Thursday :)

xoxo, t. 

Friday, September 9, 2016

A New Blog Name.

Hi friends. 

I just wanted to take a second and say a huge thank you! From the bottom of my heart for all the words of love and prayers for Jaxon and our family over the past two years. As most of you know, Jaxon passed away peacefully in my arms on July 30th. It was the worst day of mine and my husbands life and the pain is still so raw. I know there will never be a day that I don't miss him or wish he was back with us. There is some peace for us in knowing that Jax is now healed in heaven & will never know suffering again. He is in our Heavenly Fathers arms. It will never be ok for us but one day we will be with him again! 

As you might be able to see the blog name has changed from exploratorifashion to Tori Marocco and there is a special reason for this. Back when I started my blog, I only was expecting for it to be fashion and beauty based but Gods plan was so much greater. I've been meaning to change it for a couple of months now but I put it on the back burner due to everything happening with Jax. I felt like now would be a good time to change it and have a fresh start to honor Jax with getting back into blogging. My blog is like a personal journal and has been such a healing part for my life for some time now. 

I am so grateful to all of my followers and am going to use this blog as a way to honor my son. Maybe, one mom or women who is going through something similar to us or someone who has a completely different trial they are experiencing will find some comfort that they are not alone. I want to come beside you all who are struggling and help you by sharing my grief process and our life. Everyday we go forward without our sweet baby is painful, it is the hardest choice everyday to get up and push through but we do it. My son taught me more than I will ever teach him. He is my hero and I want my life to be a reflection on all he has taught me and the love that he overwhelms us with still to this day. 

I miss Jax more than I could ever put into words and I am allowing myself space and time to grieve. I truly believe no time will pass that can make this "ok" or "better" for us but I will try everyday to make my son proud. Wether that means I lay in bed and cry all day (which is a lot these days) or I am out and about breathing in all this life has for me, I'm doing it all for Jax. We have gone through the worst tragedy imaginable and from the inside looking out it is unexplainable. But I am going to try. As part of my healing process I write a lot and so I hope by sharing it helps even one person. 

Again, thank you for coming alongside me in this journey and as our journey continues. Being a mom looks very different than I ever imagined but that is ok. I will make sure that I continue to have Jaxon live on through all I do and through our future children as well. Jax will always be the best thing that ever has happened to me because he made me a mom (as well as many other reasons). Our bond will continue forever and I know that no amount of time can erase what we have. He will always be the reason I smile, the depth of my laugh and the salt in my tears. He is present in every moment of everyday for us and will always be. 

xoxo, Tori. 

Monday, July 25, 2016

Your mind is a garden.

"Your mind is a garden.
Your thoughts are your seeds.
You can grow flowers or you can grow weeds."

People always seem to ask me how I remain so positive and happy when the world around me is falling apart. You might not understand how I can go outside, smile and enjoy our days when my son is slowly dying. But living our life to the fullest is the best choice we can make everyday for our son. 

We don't get a choice of the life we are given but we are given the choice of how we live that life. I make the hardest choice everyday when my eyes open to begin another day. I choose to wake up and be grateful for another day. Another day with our son, another day to live and love well. Thats a choice that may seem easy but if you've ever been paralyzed with a terminal diagnosis of a family member like we have you know that its harder to be happy then sad. Sadness is what you feel everyday and its the easiest emotion thus far in our journey. 

I honestly hope that our story brings awareness to people. From the girl who wants a family so badly, to the under appreciated mom, to the hard working single mother, to the adoring wife who's marriage isn't all she dreamed it would be, to the over worked + over tired woman. I want to make them aware that life is full of disappointments, hardships and devastation but it can only detour you from happiness and living a full life as much as you let it. I know its hard to think that way but when you plant the right seeds in your mind you will grow flowers of love, restoration, patience and above all else true happiness. 

Not everyday is going to be puppies and unicorns. Most days are going to be excruciating. Most days will seem unbearable but there is tomorrow. Its completely OK to be sad, unhappy and melancholy but just DON'T STAY THERE. Have your day(s) to be sad because its SO healthy and healing, but pick yourself back up and remind yourself that it will get better. I always say, "I may never be 'OK' again but I will learn to live a life thats a different happy then I lived before."

From the day my son was diagnosed with Niemann Pick Disease we could have chosen to live a life that revolved around it. To stay inside and hide from the world. To not see the sunshine or swim in the pool or shop are hearts out at Target. But what would that of solved? Being depressed isn't going to find a cure for my son. Being sad and crying 24/7 would only be a disservice to my beautiful boy. He has gone more places, done more things and changed more lives in less than two years than most people will in their entire lifetime. 

Everything about my sons life is happiness. He is pure love and I want to show him that what he puts out into the world is what you get back. So everyday we wake up and give him happy, we give him love, kisses and hugs. We give him sunshine and pool days. We give him hope. Because all anyone deserves is a life full of golden days. I hope if one thing good can come from our journey is that you learn how to make your day better than yesterday. That our golden boy can add something beautiful to your life because he has over flowed ours with the beauty of his life! 

xoxo, T.
Tuesday, June 28, 2016

Who God intends us to be.

As a mom it is so easy to play the compare game. Whether you are comparing yourself to another mom or comparing what they have to what you have or even comparing what their kids are like to what your kids do, we all compare. As a mom to a medical fragile child this game is intensified more than I ever thought it would be. 

I spent so much time when Jaxon first got diagnosed comparing what other kids got to do that Jax didn't. I spent WAY to much time worrying about the life that Jax was being robbed of. I was constantly worrying about the places he wouldn't get to go, the things he wouldn't be able to learn or the friends he would never make. 

One day, I heard God whisper into my heart that He made Jaxon exactly who He intended him to be. He created him fully knowing every memory we would make with him and every persons life He would use Jax to touch. God didnt create Jax to ride a bike or to go to school or to be a singer, athlete or preacher. God intentionally created my son to be a Kingdom builder, a heart healer and a real earth angel. Some one who teaches daily without speaking a word. Some one who heals wounds you never even knew were there. Someone who looks into your eyes and challenges you to see yourself as he sees you, perfect and beautiful just as you are. 

I am embarrassed to admit that before this thought was put on my heart by God I wasted too much time worrying about this version of my child I thought Jaxon was supposed to be but in all honesty who Jax is, is better than I could have ever dreamed of. I made a conscious choice from that day forward to not spend my time grieving the life that Jax wouldn't get to live and instead celebrate the life he is living now. 

We have choices to make every day. Whether we compare ourselves to another mom, to our own mother or to a complete stranger or maybe your closest friend, we all choose to compare. But I challenge you to make the choice to celebrate the life YOU live, the children YOU have and the hurt YOU are in the midst of, as painful as it may be.

God has created you to be exactly who you are supposed to be. As much as you may covet other peoples things or their life, everything that is meant for you will happen in the perfect timing. Trust that who you are is such a beautiful picture of the love our Father has for us and wake up everyday cherishing this life He has given you. None of us are perfect and we are ALL a work in progress. As long as you try everyday to be better than you were yesterday you are becoming exactly who you are supposed to be and who God intends for you to be. I want to truly grab hold of the best life God has for me + not spend wasted time worrying about things that God has not called for my life or for my sons life.

Thanks for stopping by!
xoxo, Tori. 
Friday, June 10, 2016


Hey friends!
I know a lot of you have probably been wondering where we are with the whole IVF journey. I love how open and honest you all were with me. I was shocked at how many of you are going through similar situations to us and also infertility problems. My heart goes out to each and every one of you. I hope you all know I will pray for you all by name and also as a whole for those of you who I don't  know. So thank you all, from the bottom of my heart for letting me share our journey with you!

Diving right in.... 
So in April we went in for our first frozen transfer. We transferred one embryo. I took Estrogen for almost two weeks and then went in for an ultra sound to determine the thickness of my uterus. The lining wasn't quite thick enough so they upped my doses and then I went in again a couple days later for another ultrasound. Then they determined I was all ready and I could start my progesterone shots. Let me tell you, NOT fun. They are huge needles with thick oil like medication so its painful but I just tell myself its going to be worth it. I was on the progesterone shots for like six days and then I went in for the transfer. They unthawed the first embryo and it unfortunately didn't make it so they unthawed a second one and then used that one for the transfer. 

The whole 10 days I had to wait for the BETA test (pregnancy test) I was so anxious. I was constantly worried and so overwhelmed. I have diabetes + I am a stress eater so those two don't really mix well. I had high sugars all week and couldn't seem to get them under control. I wasn't trusting God and giving him my fears. I was just internalizing everything. My mind wasn't shutting off and I was barely sleeping at night. I had no sense of peace the whole 10 days. I guess it just wasn't meant to be because unfortunately the embryo didn't attach and at the 10 day mark we were not pregnant. That phone call was so awful for me. As soon as I hung up with the nurse I just started crying. All Mark and I want right now is to expand our family without worry. We want more than anything to give Jaxon a brother or a sister. Its so hard when your heart is aching and it seems like the ache will never go away. 

My husband is amazing. Mark is a breath of fresh air for me. I was drowning and as soon as I heard his voice on the other end of the phone I was able to come up for air. He is not just my husband, he is my best friend. He is the person I run to with good news and bad. He is the person who knows my heart and my mind more than anyone else. He has seen me at my worst and still thinks I am the most beautiful girl in the world. I am so lucky that God gave him to me forever. Every thing we go through makes us that much stronger and I am so grateful for that. 

I had to learn after that negative pregnancy test God wanted me to come to him. With all the whys, the what ifs and the anger I had inside me. He wanted me to fall into His arms and to bare my heart aches to Him. I did just that. I know that the timing will be right for us eventually. I know this yearning we have to grow our family will be fulfilled one day. I know the promises God has made me but I have to patient. Its not in my timing, its in His. His perfect timing. I know it may seem so hard to see the silver lining in your cloud but I promise that silver lining is just up ahead. I don't know if it will be this year, next year or maybe in 5 years. We will keep trying and we will keep praying for our family. It makes you feel so defeated when they tell you all the money you spent, all the time and all the pain didn't work. But to me its going to make everything that much more worth it. I know that one day when we get the phone call telling us we are pregnant I definitely will still worry, I will definitely still be anxious until I am holding that baby earth side, until they tell me that my baby is healthy and there is no niemann pick in sight. Its almost like PTSD when you have a miscarriage, a child diagnosed with a terminal disease or fertility problems. You will never stop the worry but I will go to my Heavenly Father with open hands asking him to let me pour it all on to Him and he will gladly take it. He will take yours to. So pour away my friends, His cup will never run over for you.

And now we wait. We will try again before this year is over and hopefully we will have a different outcome. I thank you all again for letting me share our story. If you want to chat, have questions or just want to make a new friend feel free to email me ! I look forward to hearing for you :) 

xoxo, tori. 
Thursday, June 9, 2016


I remember being in the room. Jax being hooked up to monitors and I remember the faint beeping of the machines and how cold I felt. We had just been admitted to the childrens hospital and the room was dark. I was laying next to Jax in his hospital bed staring at his back and truly letting everything sink in that had just happened the last 2+ hours. I always say, I'm the person you want with you in a crisis but I'm not the person you want to be around a couple hours after the crisis has taken place. This couldn't be more true in that moment. 

That morning we went to a well check up for Jax + mins later our pediatrician was telling us to go straight to the ER. Jaxon's "cold" had quickly turned into RSV ( Respiratory syncytial virus ) and he needed to be put on oxygen immediately. The min we got there they rushed us into the triage room and like a gust of wind things happened fast. SO many people were rushing in and out of the room, touching my son, asking Mark and I questions upon questions and the whole time I didn't flinch. I answered all the questions, I held Jax's hand, rubbed his back and gave him kisses on kisses. Then a doctor looked right into my eyes and asked me what our plan was if Jax needed to be resuscitated. I felt like this doctor just punched me in the face and then asked me what I wanted in my coffee. I stopped everything, looked right at Mark and as if someone flipped a light switch we both began to sob. 

I never in a million years imagined being asked what we would want to do if his heart stopped beating, if his life was in danger, what did we want. Did we want a doctor preforming CPR and pounding on his chest or did we want to hold him and watch his life leave him. Did we want to have him intubated or did we want to just let this virus take its course and hope for the best. All these questions were ones I never want anyone to ask you. I never wanted to be asked them either. Its one thing to know that your child has an incurable disease but at least then you have hope. Hope for a miracle, a cure and for it to all be wrong. But its an entirely different thing when someone tells you this reality might actually happen and not in a couple months or years but RIGHT now. It all seemed so sudden, my heart was not prepared. My mind, maybe, but my heart, no. 

 Hours later, his stats were improving and once we were admitted to the ICU things we looking stable and thats when my defense was let down, alone in that room with my son laying there, his breathing labored, I fell apart. I held my sons body and wept. It was a moment I dread, being weak, vulnerable and completely aware of everything I was feeling. I didn't care who walked in or saw me or judged me. I needed to feel every ounce of what this perfect boys life means to me and to think that I might not get another day broke me. Broke me in a way I will never forget. I will always remember the way my tears stained Jaxons blanket he had draped over him and the way he squeezed my finger as if to assure me everything was going to be ok. And it was. A week later he was on the mend even though doctors told us that most likely wouldn't be the case. That it would get worse and cause havoc on his already fragile and tired body. Some days I wonder where God is. Where his goodness lies and why sometimes its not with my family, more importantly my son. On that cold night in February while lying next to my very ill son in his hospital bed I looked out into the darkness and asked God where He was. If he loved me and my son how could this be happening. Im scared some times to be honest and real with my feelings because its so much easier to smile. Getting REAL really hurts. Getting real isn't easy, it isn't fun and you definitely don't get real without getting broken first. 

I can tell you right now, I have NO idea where this perfect plan is that God has for my family and I. I'm not God. But I know its true. I know HE IS GOOD. He is there, always. Things in this life are hard, heart breaking and all around unfair but its not because of God. He wants the best for my family and I. I choose to believe that no matter what season I am in or what fire comes to us that we have a God that can do anything. He healed my son from a virus that was supposed to take him from us because medicine says his body wouldn't be strong enough to fight it off. God constantly uses Jaxon's life to remind me of his goodness. To remind me to be real and vulnerable. To remind me that even when it hurts, its more than worth it. The goodness of God isn't measured by how broken my heart is but by how his light shines through those broken places + fills them, even on the coldest of nights.

xoxo, tori.
Wednesday, May 11, 2016

Summer Dress

Dress: Shop Lux Clothing // Shoes: Jeffrey Campbell via Anthropologie // Hat: Abercrombie and Fitch // 

Hey beauties! 

I am back from North Carolina and it was the best mini vacation ever! I had so much fun having some much needed relaxation time and spending QT with my boys is always amazing. It was pretty warm while we were there high 70s to low 80s which was perfect weather in my opinion! We even saw some dolphins one day in the water while we were at the beach, or maybe they were sharks! Either way it was beautiful. 

On our last day there I wore this sun dress and I got so many questions about it. Unfortunately it looks  like its sold out where I got it but shop lux has a lot of cute things and similar dresses to this one! I love any easy summer dress you can throw on with cute booties and a hat (I'm hiding that dirty hair!). Its so easy to look put together without really taking any time! I'm not even wearing makeup here because I was so rushed that morning! But when you have a cute outfit on no one is really looking at your face, right? haha. Hope you all enjoyed your Mothers day + your weekend.

Thanks for stopping by! 
xoxo, Tori. 
Friday, April 22, 2016

Being a mom is my jam.

Hey friends!

I haven't blogged in awhile because I guess sometimes I just don't have much to say. I use this blog just to share whats been going on and my feelings through it all.

 Life is hard. Its stressful and emotional EVERYDAY. People don't know what my day to day is like because unless you have a medically fragile child it doesn't make sense to you. I'm not complaining because I really never consider my life something to complain about. Yes, its really hard and there is a lot I have to do but at the same time I'm so incredibly blessed. I have the most amazing son and such a supportive husband. Everyday I get to wake up and see Jaxon's beautiful face and that is a miracle for us.

I think being a mom means more than love. For me it means beeping machines, strict feeding schedules, pain medications, oxygen, physical therapy everyday, water flushes, lots of crying (from Jax and from me) and doctor appointments that never leave me with any answers + lots more. I basically have a Ph D in Jaxon. Everyday I have to be on my A game and constantly studying every move he makes. 

Its a heart breaking thing watching a child suffer. Unless its your child you will never comprehend it. I thought I was prepared for it until Jax started to suffer and I realized you can never be prepared.  You can never be prepared for your child loosing their ability to move, sit up and laugh. Watching the smiles fade day by day has maybe been one of the most painful parts for me. And maybe thats why I shy away from the mundane conversations and friendships because sometimes when people are talking about their lives my brain is some place else + I just can't relate to them. I'm numb and over emotional all at the same time. 

When Jax first was diagnosed I had two options, I could be an okay mom and not get too attached so it might hurt less in the end OR I could love him, kiss him, let him change me and get overly attached so that one day it would literally rip out my heart and soul. I chose the ladder. I will always choose that. To me there wasn't another choice. So everyday I get up and I make the choice to put my own thoughts and feelings aside and make Jax happy. My heart breaks new again everyday but then one look at him and he magically pieces it back together. Its truly amazing and I never imagined loving someone as much as I love him. 

I will always do everything I can to make his life here on earth the BEST it can be. We don't know if we will have years, months or weeks left with Jaxon. I will never be ok with that. There will be NO redemption for me on this side of heaven but I know that God can restore the broken places. I know that nothing will ever make this ok until I am in the embrace of my Heavenly Father.  But for now being a mom is my jam and I embrace the fact that its the best part of everyday for me + probably always will be.  

No matter how hard some days are, how many hospital stays, doctor appointments, painful decisions and earth shattering conversations we have to have I will do it all for Jax. I will always choose loving him because thats the only thing that makes any sense, its the only part of my life that comes easy and makes me feel the most alive. 

Shirt: Momshirtco

xoxo, tori. 

Tuesday, March 15, 2016

18 months of miracles.

18 months of loving on this sweet boy.
18 months of kissing every inch of him.
18 months of heart expanding love.
18 months of joy.
18 months of hope.
18 months of intense emotions.
18 months of trying to get this mom thing.
18 months of faith.
18 months of miracles upon miracles.

Our miracle might look a little different than I would like. My husband and I pray for a very specific miracle day in and day out. For Jaxon to be completely healed of his disease and for him to live a long and happy life. But I can't deny that just because the miracle we want hasn't happened doesn't mean it won't and also doesn't mean that other things aren't miracles. His life is a miracle, his smile and everything this he is, IS a miracle. He is 18 months as of the 14th and when Jax was diagnosed with Niemann Pick disease they told us that he most likely wouldn't live to be 18 months. BUT here he is. That is a miracle I am not going to down play just because there is something else I'm hoping for. I will always choose to be joyful in hope (romans 12:12). I refuse to let my grief over take my joy. I will always make sure I am living for today and showing my son that joy & hope go hand and hand.

As always, thank you for taking the time to stop by.

xoxo, tori.
Wednesday, March 9, 2016

Our IVF/PGD Journey.

Hi my loves!

I hope all of you are doing well. I have been getting a lot of questions since I posted last about giving you guys more detail about our journey with IVF and PGD. So Im going to try to make this post not SUPER long but I can't make any promises because its a lot of information. So, lets dive right in!

When Jax was first born Mark (my husband) and I were so happy to be parents. We loved it so much that we knew when Jax was like two months old that we didn't want to wait years to have another baby. We figured we wanted to start trying to get pregnant again when Jax was about a year old. We would try the good old fashion way, but when Jax was diagnosed they told us it was genetic. Not a freak thing but actually something that had a chance of happening every time we tried to have a baby. The exact numbers were 25% chance of having a baby with Niemann-Pick Disease Type A. This was devastating to us. We always wanted a big family but now we were thinking that might never happen for us.

We got introduced to IVF through our genetic doctor and she started exampling what PGD was. So lets start with the basics because before I ever started this process all the terms made NO sense to me.  IVF {In Vitro Fertilization}  is defined as the process of fertilization by manually combining an egg and sperm in a laboratory dish, and then transferring the embryo to the uterus. PGD {Preimplantation Genetic Diagnosis} is basically after the eggs have been fertilized the lab is able to biopsy the embryos to test them for the specific genetic disease they are looking for before implanting into the uterus. 

I started the process by going to meet the doctors. A lot of blood work + ultrasounds. Then once all my levels were normal we were given the go ahead to start the medications in December. I started taking a shot every morning that basically turned off my ovaries. Then I went in to get more blood work and ultrasounds. Then they told me to keep taking the shot in the morning but also add in a shot at night that would help me produce a lot a lot of eggs. Usually your ovaries only produce 1 egg each. I went in every day for a little over a week to help monitor how many eggs I had. The ultrasounds became more painful overtime {they were internal ultrasounds + my ovaries were so enlarged because I had SO many eggs it was very uncomfortable}. 

Finally I went in one morning and they counted I think 10 eggs on one ovary and 11 on the other. They told me to come in the morning and I would be put under general anesthesia and have the retrieval of my eggs procedure. I went in at like 6:20 on a Saturday morning more nervous then I ever was. I was so scared and didn't know what to expect but I was just so happy that I was able to do it and had so many eggs. Mark had to give a sample so he wasn't allowed to come back with me which made it even more nerve wrecking. They gave me something to help calm my nerves and then put me to sleep. After I woke up from the procedure I was in a lot of pain. They gave me some pain medication to go home with and it made it bearable but I was still in pain for about 3 days. 

They ended up retrieving 31 eggs {WOW I only thought i had 21}!! I am so grateful and shocked that I had that many. Of course all of them weren't able to be fertilized. They were able to fertilize 24 eggs. They called us everyday for 5 days to let us know how many survived each day and how many didn't. Because they were letting the fertilized eggs grow in a pea-tree dish for 5 days. They then biopsied them {PGD} and sent the cells  from the embryos to the genetic testing facility to test them for Neimann Pick. Then they froze all the embryos that survived the five days, which we ended up with 9 embryos on day 5! God is so good! 

We got our results back from the embryos... Now let me say that my husband and I had internal battles with our selfs wondering if IVF was the right route for us and if it was what God wanted us to do. We didn't really know if we were making the right choice because what if the 25% {vs 3% chance  of NPA using IVF} was just a number and didn't really mean anything if we had a baby on our own. We prayed and prayed waiting for the results of the embryos. 4 embryos had Niemann pick disease, 3 did not have the disease and 2 are carriers of Niemann Pick Disease like my husband and I are. Clearly, we made the right choice because more than 25% were effected by the disease. Knowing these numbers made us so confident in our decision and made us realize that if we had tried on our own we most likely would have had another child with this horrific disease. 

We are so happy to be able to have the chance to be parents again. Now we are just waiting for a couple things and hopefully we will be expecting another little babe before this year is over :) A question a lot of you had is if we are implanting more than one embryo at a time and the answer is NO. we are only implanting one at a time for a couple reasons. One, I have diabetes and am already considered a "high" risk pregnancy and don't want to make it any more high risk. Number two, I delivered Jax at 35 weeks and that might be considered "ok" for one baby but for multiples its NOT safe! If God decides to give us multiples with one embryo than that is his doing but we will not be implanting more than one. 

Thank you guys so much for being so kind and I am so hopeful for the next chapter in our lives. As you know if you follow my blog, I do have a history of miscarriages so we will be keeping it under wraps for my first trimester and NO I am NOT pregnant right now! But if you think of it will you keep my family in your prayers. We are so wishing that Jaxon will be able to meet his siblings and be the best big brother ever {which we know he will!} Also pray for Gods miracle of total healing here on earth with his family. We are so blessed to be chosen as his parents and he has made our lives filled with more joy, love and life then we could ever put into words. 

If you have ANY questions feel free to email me and make sure to follow me on IG to keep up with my family and I! 

Lots of love!
xoxo, Tori. 

ps. I just want to say for all you mamas out there or women who are wanting so badly to be pregnant, I know how you feel and I pray for your hearts and your wombs! Trust in God and know that his plan is so much greater than you could ever imagine. He is FOR you. He loves you and wants only the best for you. Trust in his promises and his truths! That is what will make all the tears, loneliness, frustration, jealousy and yearning worth it. DON'T LOSE HOPE! and if you ever need someone to talk to, vent to or just ramble your thoughts to I am only an email away! 
Monday, February 22, 2016

Spring Vibes

Hello sweet friends.
I've missed posting so much and I am trying trying trying to make more time for it I promise. Winter just gets me in such a slump and my family & I have been dealing with a lot of stuff lately (good stuff!) so its consumed us for a little bit. One of the things that we are "going through" is trying to have another baby. When we found out about Jaxon's disease (Niemann-Pick Disease Type A) doctors told us that if we tried to have a baby on our own that it would be a 25% chance every time that our baby would have NPD. If you've been told this news as a parent you know that 25% is a scary thing to hear. So we decided to go the IVF route. [Disclaimer: if you have any negative opinions about IVF please keep it to yourself. It is a personal choice which my husband and I are 100% confident we made the right one.] I will let you guys know more details about PGD and IVF in another post because its a long journey, one we started June of 2015 and hopefully will be coming full circle in the next couple months. We can't wait to see Jax as a big brother and the next baby who will make our family stronger. 

I love being a mom and this #ootd is such a comfy outfit for us moms. I basically wear flowing and comfortable clothes 24/7 because its just practical for my life. I linked all the outfit details below. Thanks for stopping by. 
xoxo, Tori.

What I'm wearing: