**Our LiL' Miracle Boy**

Showing posts with label Tytan. Show all posts
Showing posts with label Tytan. Show all posts

Friday, January 9, 2015

The Dreaded Year Mark

For 365 days, I dreaded hitting our 1st Angel Anniversary. The thoughts of it made me want to crawl up in a hole and never come up. I couldn't possibly imagine having to go a whole year without my baby, and even more so the thoughts of telling people "our little boy passed away a year ago". I know it sounds silly or strange, but I hate the time passing. For me, it has only gotten harder rather than easier because I feel like each day is one more day without him. One more day without his smile. One more day without blue in our home. One more day with that hole in our heart.
For the past year up until today, I have been able to say "I just wish I could go back to where we were a year ago" or "A year ago from today our little man was doing this". Now a year has passed and I can't say those things any longer. We have officially went an ENTIRE year celebrating, well more like surviving, of holidays. I should be taking Tytan to his 18th month check-up and instead I am just trying to get through the anniversary day of his passing. I really hate the fact he died on the same day of the month as his birthday because I feel like every month we celebrate him being one month older, yet mourn for the fact it's one more day without him.
This past year has been hard, the hardest most painful year of my life. This past year multiple times I have questioned myself, my marriage, & even my faith. I have cried more tears than I ever thought was possible. I have spent more time looking at pictures and reminiscing on memories than I did making new ones. I have asked question after question trying to understand why and still haven't found the answer I want. Along with all those not so good things I have experienced a lot of good. I have learned lessons, witnessed miracles, and seen just how much our Heavenly Father loves us.
Believe it or not, on October 20th, 2013 after our little man left earth and entered back into the Kingdom of God I remember feeling a sense of peace. I was devastated and my heart broke into a million pieces, but for the first time in 6 months my baby was no longer suffering. He was free. That sense of peace got me through about the first week after Tytan's passing. I still remember waking up the following Monday morning and reality hitting me like a ton of bricks. Jordan had went back to Vernal, the funeral was over, visitors no longer stopped by, and I was left ALONE. It finally hit me my baby was gone. The little boy I have eat, slept, and breathed for the past 6 months was no longer in my arms. Every day from that day forward it has tugged at my heart just a little harder that he is gone. I miss everything about him- I miss the heart world. I miss the doctors & nurses who became family to us. I miss the life that I was so scared to live. I wish so badly our story would have ended differently. I wish so badly our Tytan was the "miracle" who lived to be 100 years old with "half a heart", but unfortunately that wasn't the Lord's plan. Sometimes accepting the plan is the hardest part of it all. Many time I have asked "Why?" Why Tytan? Why only 6 months?  Why didn't he heal my son when he has the power and heals people every single day? Accepting the Lord's plan and coming to term with what happened has been something I have to work on every single day. It all comes down to one word- FAITH. I have to have it. I have to believe. I have to trust. One day when all is said and done I will KNOW all the answers to the questions I asked above, but until then I must be patient and have FAITH!
This past year we have been blessed beyond measure I must say. We have had so many wonderful people carry us through. It has been the ones who I never imagined be there, and the ones I had hoped would be there walk away. I can't begin to thank you all enough for the prayers in our behalf this ENTIRE year. We have felt them- every single one of them. Thank you for the gifts in memory of our baby boy- the ornaments, the pictures, the plaques. Thank you to those who have visited his "special spot" leaving notes, balloons, toys, etc. Nothing makes a grieving mom feel better than knowing her baby boy hasn't been forgotten. Thank you for allowing me to share our journey through words & pictures. Thank you for all your sweet comments. It is because of all you that we somehow survived an entire 365 days and as hard & excruciating as it sounds we will find a way to get through another 365 days without our boy our heart. The days are going to pass, the seasons will change, we will age, and life will go, but our Tytan will NEVER be forgotten. He will always be in our hearts & in our lives. He is the reason we are now who we are- he is the reason we now strive for what we do- he is our hope - he is inspiration - he has paved the way for our family. I look so forward to the day I we are all reunited. Until then.... We will continue to get by one day at a time.

Friday, October 17, 2014

"Live Like You Were Dying"

        Many years ago, Tim Mcgraw came out with a song called, "Live Like You Were Dying". In this song, he talks about a man who was told his time here on earth was short. It talks about the things the man went to do before he passed. This is a song that a has gained a greater meaning in our life over the past year and has become a motto that is constantly in my mind.
         No I wasn't told by a team of doctors that my time on earth was about to come to an end, but one year ago today I WAS told by a team of doctors that "there was nothing more they could do for my almost 6 month baby boy" and he would soon be leaving our arms and this earth. There is nothing in the world that can prepare you to hear those words. We had spent over the past 2 months in the hospital fighting for our boy's life. We had heard the words, "he can't get much worse" or "there is not much more we can do" but never those words. Jordan was at work that day, and if you can only imagine the fear & heartache he felt when he heard those words over the phone and was still 2 1/2 hours from the hospital where his wife, little girl, and sweet baby boy were. I don't want to know how fast he drove that day, but all I can say is he made it to us in record timing that day. We weren't told an exact timeline of when Tytan would go. They said it could be hours, days, or maybe even weeks. With Tytan's fight and determination nothing would surprise them. So for the next four days as a family of four we were given the opportunity to "live like we were dying" and in fact one of us was. Our perfect baby boy would be returning home shortly, and we decided to make the most of what we could with what we had been given. It wasn't the life we chose, but the life that chose us. Tytan at this point was very ill, so of course we weren't able to fly cross country and complete a bucket list for him. Part of me wishes so badly we could have, but I have realized most of our bucket list items are nothing more than worldly things. The most important thing in this entire world is FAMILY. So for the next 4 days, we did just that- spent every minute we could as a family. We cherished them then and we still cherish them today. We will always cherish our last moments as a "family of four".
         One of the hardest things for me to accept was Azleigh would soon be losing her best friend. People have a hard time understanding the connection and relationship they shared because Azleigh was so little, but it was something you just had to see to believe. They were buddies from Day 1 and that girl NEVER missed a day seeing her brother. Thank heavens for my wonderful mom who made it possible and brought her to the hospital each day to spend time with Tytan. She would read him a book every day, give a million kisses, and in the last days spent rocking and singing to him "I am a Child of God. Tytan couldn't asked or picked a better big sister if he tried. She truly is the best and loved him more than anyone I know. She was such a trooper through it all and just seemed to "get it". She was there within minutes of him being born and was there as he took his last breath here on earth. Here are some of the special moments our sweet babies were able to share in Tytan's last days.




   Tytan had been so sick and hooked to so many machines and wires that he was pretty much on lock down in his room. It was a chore even to untangle everything to hold him in the chair next to his bed. The day before Tytan passed we got permission to take Azleigh & Tytan on a ride in the wagon. We went around the CICU halls multiple times, and Tytan even got to feel the sunshine on his face for the first time in over 2 months. He just looked around and loved every minute of it. This is a memory engraved in my mind forever, and I'm so grateful we were able to do this.




     We also had 2 family photo shoots thanks to very generous people at the hospital and also friends. I was able to get some of my babies together, us as a fam of 4, and Tytan in his blessing outfit. These pictures are some that are far from perfect. We're not dressed up for either of them, but in my eyes are beautiful and will forever be in our home. Tytan's last photoshoot :]













The nurses at PCH are amazing!! 90% of them go above and beyond to make things a little better. Everyone up there knew I slept with Tytan when he was home. This is something I had missed terribly since he got so sick. For Tytan's last 2 nights on earth, I was able to make a bed next to him and hold him all night long. Tytan and I loved it! He slept so good and was so content. You could just tell he felt safe in the arms of his mommy. I am so grateful that the nurses cared about both of us enough and knew we both needed those nights together!!

Lastly, we knew Tytan would never live to see his 1st birthday, and the thoughts of him never having a party seriously killed me. Jord and I decided we would throw him a half birthday party on Sunday, October 20th when he turned 6 months old. We decorated his room, invited all our family, and my sister in law even made him a cake. We sang to him and celebrate his sweet little life. Little did we know Tytan would enter into Heaven within hours of his celebration. I am so grateful we were able to do this and all of our family was able to be there to love on him one last time. If Tytan knew anything- he knew he was loved, SO LOVED!!









     Part of me feels fortunate that I never EVER took advantage of Tytan or the time I had him here for granted. I guess that is one of the positives that come from the heart world- you learn just how fragile life is.  From the time he was born, I didn't know how long I would have him. To be honest, I truly felt like he would be around for a long time, but now looking back I must have known more than I thought I did because of the things I did. I spent every second of every day with him from the time he was about 3 hours old. I never left the hospital, not even at nights, and at home I held him all day and night. I would let my mom or Jord hold him long enough to shower, but that was usually it. I spent many days sitting in the chair in my lounge clothes doing absolutely nothing but snuggling, getting grins, and taking pictures. I am so grateful for the 5000+ pictures I have of him in his short life. I look through them every day. They break my heart and make me feel whole all at the same time. I am grateful I have a husband who sacrificed his time and worked out of town all week at the time, so I could stay home with our babies and never have to leave them. As much as he hated to leave Sunday nights, he never complained or made me feel bad. I cherish the 6 months Tytan was in my arms and our home. He touched our hearts in an very sacred way and changed our lives forever!
        As humans, we often take things for granted. Each of us are so blessed and have so much that we forget to be thankful for the simple things. We often forget that things that seem simple to us may be something someone else is praying for. Never take ANYTHING big or small for granted. If I have learned anything at all, I know that "Tomorrow is NEVER promised, so make the best of Today!" I challenge each of you to step back and reevaluate your life. Are you priorities in order? Are you "Living Like You Are Dying?" We may all have regrets or things we wished we would have done differently whether you live a near perfect or not so perfect life, but I can promise you will never regret putting your family first and cherishing each moment with them. There will never be enough time or money to do everything you need to do, but make sure to make the time for your family. If you are working out of town- start looking for ways to be home at night with your family. If you are both working just so you have "extra" money to play, buy worldly things, etc. consider figuring a way to make it work on one income or even go part time. If you spend your weekends with friends and send the kids to grandpa & grandma's house try staying home as a family for a weekend.
I am sure if we were all told exactly how long we would have here on earth, or how long we would have our children and spouses we would probably do things so much differently. The worldly things, going out with friends, 2 hours a day at the gym, new play toys, and "alone time" wouldn't matter as much. Yes I know those things are fun and still important to us, but make your family the most important. If each of us had an expiration date, we would probably do things differently. Don't wait until it's too late. Start now. Be a better mother or father. Be a better spouse. Be a better friend. Be a better YOU!! If you want to change or aren't on the path you know you should be-- don't wait. Stop thinking you can always change tomorrow, next month, or even next year. The time to change is NOW! If there is there something you want to tell someone- do it now. Make sure those who mean the most to you know how much you love them. Live each day as it is your last and always remember Tomorrow Is Never Promised!

Everyday Struggles

Some days are okay, some days are bad, and other days are real bad. Today has been one of those days. Azleigh is struggling and really missing her baby brother. She prays every day "he will come back to us." This morning when she woke up I asked her the usual, "What do you want to do today? To my surprise she caught me off guard and replied, "Can we please just go see the real Baby Tytan? I miss my baby brother that smiles at me." At that moment I felt a knife stab me in the heart. Why does a 2 year old little girl have to know this kind of pain. She misses her brother so much and it is becoming even more apparent as she gets older. It's hard to explain to a little one that we can't just visit Heaven for a day. Since we couldn't go see the "Real Tytan" we settled for watching videos and looking through pictures of our boy. It breaks my heart to see Azleigh cry for her brother. It didn't hit me until today just how much life has changed, not only for me, but for all of us. Even our sweet little lady's world has been rocked.
For 11 months  now, we have struggled in some way every single day. There are triggers in life coming up constantly, some hitting harder than others. I knew October 20th, 2013 our lives were forever changed, but I'll be honest I don't think I realized to what extent. I was in denial and hoped we could just wake up from this horrible horrible nightmare we were living.
11 months, 15 days, and 4 hours, and 7 minutes have passed since that day we said farewell to our little guy. For over 10 months now, we have been forced to live a life we didn't choose and tortured with triggers that used to bring so much joy and now can bring so much pain. People can't understand the hurt, the loneliness, and the emptiness that comes with losing a child unless you have lost one personally. You wake up missing a piece of your heart and go to bed missing that same piece. It NEVER goes away. Some days it hurts worse than others, but the hurt is always there. Death changes EVERYTHING, especially the unexpected loss of a young child. It's not something you'll ever be prepared for and turns your world upside down emotionally, physically, mentally, and financially. It changes everyone involved whether its your 2 year old daughter or your 60 year old father.
Honestly about every hour of every day something "triggers" me of my Tytan. Some of them are happy triggers, and others are torture and just a reminder that my baby boy isn't here.
Some of the things I used to LOVE so much now seem to be painful.
Pictures are hard, but especially family pictures- Anyone that knows me knows I LOVE pictures. I take a million a day, especially of my kiddos. In the six months of Tytan's life I was able to take over 5000 pictures. Even though I cherish every single one of them, I still wish I had more. The past 11 months I have really struggled to take a family picture. I want to have the pictures for the memories, but they just don't look right- like someone is missing. A very special someone- a handsome little man that completely stole our hearts and changed our world. It's hard knowing how matter how big our family grows there will never be a complete picture. I hate knowing Tytan's picture on the walls will never change past 6 months. I don't get to compare pictures each year when I update and see how much he's changed. There will never be a baptism, graduation, mission, or wedding picture of Tytan's on our wall. Those milestones are ones we will miss out on in this life, and it kills me not being able to experience each and everyone of those things with him right now.
Shopping- This used to be one of my absolute favorite things to do, if not the most favorite. I seriously LOVED to shop, but even more than that I have an obsession with baby clothes and buying them for my kids. Both of my kids could clothe a colony in Africa they have so many. I love them!! Before Tytan was born & we found out about his heart I'll be honest there was a point I was too scared to buy him things because we honestly didn't know if he'd ever come home after being born. Once we had him & he did so well, I went crazy! I bought him clothes out the wahzoo all the way from preemie to 2T. I have the cutest little outfits still with tags hanging in our closet torturing me because I will never see him in them. The torture is not only at home, but EVERY single clothing store I walk into. As many of you know, we are expecting another little girl next month so I have been trying to find matching clothes for the 2 girls. It breaks my heart to walk past the boy aisle and see something in the same color because in my heart I know there should be one more. I should have a handsome blue eyed, blonde fohawked little boy to match his sisters.
Seeing other little boys his age & the things they are doing reminds me my little boy should be doing the same thing. Of course, I will never wish this upon any parent to lose their child, but I'll be honest I am a bit envious of those who get to watch their babies grow up. It stings just a little knowing what life COULD of been and now what life is.

I could go on and on of all the things that make those hard days just a little harder. We all have things in life that make things hard. For me it is the loss of our baby boy, but there are so many other trials in life that cause us to experience everyday struggles- whether it be abuse, a divorce, our own self esteem, finances, death, a medical illness. etc. Some of these things are bigger than others, but one thing I have realized through this experience is we are all different and the Lord knows that. The Lord gives us trials according to what we can handle. Of course these trials are going to test us and we may think often "I can't handle this", but with the help of the Lord and the people he has put around us we can get through the hardest of times. Be kind to those around you. Recognize the struggles that we all have in life, and do your best to love one another, especially through those struggles.

Monday, June 30, 2014

The Funeral

       The viewing and funeral and the week leading up the funeral was an out of body experience for me. I truly felt like I was a fly on a wall watching this bad dream for our family. It didn't seem real, and I felt like I was watching a sad, sad movie. This movie was different. It was my family as the movie cast, not just some strangers. And this movie wasn't just a story being acted out. It was real. This was now our reality. And in just a few short hours we would be telling our precious baby boy goodbye for the last time here on earth. I was amazed by the love and support we received from so many friends and family. We had friends from all over attend Tytan's services, and I can't begin to tell you what it meant to have them there. Of course, it didn't take the pain away, not even a little, but it felt good to know they cared. It felt good to know we mattered in their lives. 
      I remember during the viewings, I couldn't keep my eyes and hands off my baby boy. I just wanted to pick him up and run. He couldn't really be gone. He was too young. He was too perfect. Saturday morning, I was hoping time would just stand still. The second viewing started at 9:30 AM, and it was a constant line for the hour & a half we were there. I remember I kept watching the clock praying it would just go slower, so I didn't have to EVER wrapped up my precious boy and close the casket with his tiny body here on earth. The funeral director cut off the line and told us we needed to prepare to say our goodbyes, so we could start the funeral on time. Our family went first. My parents and brothers are very close to my kids, so it broke my heart to see their hearts breaking as they kissed their grandson/nephew. Then came the moment I dreaded for days. I laid my head on his small little chest and sobbed. I wanted so badly to hear a beating heart, but I couldn't and knew it wouldn't. I remember kissing his soft sweet lips and peace came over me. I vividly heard a voice in head. To be honest it was a voice I didn't recognize, but by what was said I knew it was my Tytie boy. I heard, "Don't cry mommy. I'm okay now. I promise you will see me soon" At that moment I was once again reassured and testified to that I would see my little boy again. He's not gone forever. Soon-- I'm not sure if that means months, 5 years, or 80 + years until I see him, but I know in the eternal realm of things no matter how long it is, or how long it seems, it will be soon. I look forward to that day every moment of every day. I dream of that day. O what a glorious day it will be.
     No funeral is ever good or easy, but I must say Tytan's turned out perfect. It was just what I wanted it to be. Our little Az and nieces and nephews sang so cute. The speakers did an incredible job. My humble husband was so sweet reading his only son's life sketch and carrying his sweet little casket to his resting spot. I know Tytan was there. I know Tytan approved and was proud. Tytan was happy with the way he valiant, short, and nothing but perfect little life was celebrated. 

Here is a link to a video of Tytan's Special Services - Tytan's Life Celebration









Friday, June 20, 2014

Miracles

“A miracle is an extraordinary event caused by the power of God. Miracles are an important element in the work of Jesus Christ. They include healings, restoring the dead to life, and resurrection. Miracles are a part of the gospel of Jesus Christ. Faith is necessary in order for miracles to be manifested” 

There are countless stories we hear every single day about miracles taking place from back in scripture times to current day in our own lives. From the time we are old enough to talk we are taught about the "miracles" in the scriptures - healing the sick, parting the red sea, feeding thousands with 2 loaves of bread & few fish, and saving Daniel from the lion's den. You could go on and on about the many miraculous miracles that God has preformed throughout the years.

Over the past couple months, I have found myself questioning and asking Heavenly Father, "Where was our miracle?" "Are we not important enough in God's eye that we didn't deserve a miracle?" "Were we not faithful or prayerful enough for a miracle to happen?"
Of course neither of those are true. I know Heavenly Father loves each of us all the same, and none is more important than the other. We were more than faithful during our trial, and I know the Lord recognized our efforts. We were in constant prayer since the day we found out about Tytan's heart condition. For the 2 1/2 months we spent fighting in the hospital, we were fasting at least every other day. We did everything we could. Tytan had a priesthood blessing daily. We had the faith, and we just KNEW he would be healed. We had multiple family fast, a community wide fast, and people from all over the world were praying and pleading for our little guys life to be saved, but why wasn't it?

This past month in our own little community we have witnessed a miraculous miracle. A sweet little girl had a drowning accident and went 30+ minutes without oxygen, and she has had an incredible recovery thus far. I don't know the full details, but she doesn't have near the damage they thought she would, and she is expected to make a full recovery. How awesome is that? I love hearing about these types of miracles, but I would be a liar if I didn't admit it pulls at my heart string, and I once again wonder "why not us?"

After many many nights on my knees, praying, and reading the Book of Mormon I had come to an understanding of why not us. It comes down to "It wasn't part of the plan" That itself is a miracle in my eye that the Lord loves and cares about each one of us so much that he has carefully sought out a plan for each and every one of us. No two plans are the same or I personally believe no two plans are fair. Before we came to the Earth in the Pre-existence I think each one of us helped design our plan. That may seem crazy talk to some, and you might be thinking "I definitely didn't agree to this". But I truly believe each one of us had agency and made choices before we were born just like we do now. Tytan made the choice to be the one in our family to pave the way. He knew it wasn't going to be easy, but he agreed to come down here for a short time and return home. Jordan and I agreed to be the parents of an absolute PERFECT child and knew we would have to pay the price of letting him return home early. Azleigh made the choice to come here and be the strong spirit she is to keep her parents going and be a light to us on the darkest of days. Do we remember any of this? Absolutely not. That is what the veil is for. But there is one guy who does and remembers ALL of it. He knows the big picture - the big plan. Did we know it was going to be this hard? To be honest, I don't think we did, but that is where faith comes in. We must have the faith in "the plan" to be strong enough to keep going, to not allow ourselves to get angry & hate God. God doesn't not perform miracles or give us trials to punish us. If we use these trials in the right way, they strengthen us. They strengthen others. They teach us. They prepare us for the things to take place in the future and the here-after. We can choose to let our life experiences make us bitter or better.

The more I pondered about the "miracles" in our life, especially in the past year I realized yes "Tytan wasn't raised from the dead" or "Yes Tytan's brain wasn't miraculously healed from all the lack of oxygen", and "No Tytan didn't received a new heart to keep him alive" but GUESS WHAT? We witnessed more miracles in Tytan's 6 months of life than some do in an entire lifetime. The first miracle was that Tytan lived as long as he did, thanks to God's Miracles workers who truly do perform miracles at Primary Children's hospital. It was a miracle that we as a family ever got to bring Tytan home from the hospital. It was a miracle that Tytan was able to spend 2 months at home completely TUBE FREE! It was a miracle I got to see Tytan smile and giggle. We witnessed a miracle when all odds were against us and Tytan came off both ECMO and the ventilator. It was a miracle Tytan's little body declared itself, and we as parents didn't have to make the choice to "pull the plug". It's a miracle Jordan worked for Vernal City who never let him miss a day of pay whether he was there or not, and a community that didn't even know us but did more for us "strangers" than I could dream. It's a miracle we had the support system we did and still have that have blessed our lives in more ways can we can count. It's a miracle that a boy with such a small little body could change so many lives in such a short amount of time. We received many miracles after all didn't we?

I think sometimes as humans we take the everyday miracles for granted. We forget just how fortunate each of are in the hardest of times. We forget that just because God didn't raise our loved one from the dead that we haven't been granted miracles. EVERY SINGLE DAY IS A MIRACLE. Each of us have different struggles. Each of us live fairly different lives, but no matter how hard you think you have it there is still miracles within your life. Whether you have lost a loved one, gone through a divorce, struggled to have children, or whatever life may have thrown at you sit back and count just all the miracles you have been blessed with. It's a miracle you wake up every morning. It's a miracle you have a job and a home to live in. It's a miracle whether you have a spouse, one child, or multiple children that you have someone to love and come home to at night.
I challenge you next time you are struggling to focus on what you do have rather than what you don't. If you are fed up with your job, consider it a miracle you have one. If you are tired of whiny kids, consider them being able to cry a miracle. I have met many parents who have children on ventilators who a crying child would be music to your ears. If you are tired and exhausted of taking care of a sick child, consider it a miracle they are still here with you. Many bereaved parents would give anything to go back to the days of living in the hospital with a sick child. If you think you have it bad, always remember someone else, somewhere out there, probably have it worse than you do.

Lastly, Remember EVERYDAY IS A MIRACLE!!