An Outdoor Weekend and a Mountain Analogy

Now that Owen is at a point where my husband and I feel comfortable leaving him for short amounts at a time, we have taken turns going to our hometown in Tennessee on a couple occasions.

It’s a refreshing way to keep our sanity and helps pass time a little more quickly until we can bring Owen home for the first time.

Each visit is quick, and doesn’t leave much time for visiting every person we would like to. Sometimes we even choose just to stay home and relax on our couch.

Anyway, the last time I went home, I had a longing to be outdoors. After going straight from losing Mabry Kate during the winter to being in a hospital with our son for 110 days, to now not being able to go anywhere in public or in the sun with Owen, it’s just where I wanted to be. Outside.

I started that Saturday with a much needed trip to the lake with my mom and dad. It was bittersweet simply because the last time I was on that boat with my parents, we were with Mabry Kate taking her on the lake for the very first time. As I started to dwell on it and become emotional, Mabry Kate showed up, just as she always does.

Even though there was not one drop of rain in sight, much to my surprise, I literally watched as a rainbow was painted on one of the few clouds in the sky. Yes that’s right. Not one raindrop or gray cloud nearby, and she painted me the most beautiful little rainbow.

image

Following the lake, I had made up my mind no matter how hard it would be for me, I wanted to hike the Chimney Tops trail in the Smoky Mountains with my best friend, Jill. The trail did not disappoint. For me, it was a challenge.

It wasn’t until a had returned to Durham and was having a conversation with Jill that I realized how much that hike represented my family’s life.

The way up the mountain was so tough on me, just like this whole journey with Owen has been.

There were parts that were smooth and flat that we just sort of coasted through, much like some intermittent days at the hospital here and there, especially before his chemotherapy.

But those smooth parts were far outnumbered by the steep and rocky parts, just as they have been through Owen’s transplant journey. At times, I would become worn, tired and discouraged, but my focus was on reaching the top. The views there are breathtaking and so worth the hike. So with the help and encouragement of Jill, I continued. Just like in life. Our focus is on getting Owen better and getting him home (the top). There have been an uncountable number of times when we have become worn, tired and discouraged, but we have been blessed with an incredible support system who continually encourage and pray for us. So with God’s help, and the support of our family, friends and prayer warriors, we press on, our eyes focused on the top.

When we finally got to the top, you could rock climb the rest of the way to get to the very tip top. As we began the rock climb, it began to rain. Even though we could see the top and we were so close, there were still obstacles.

image

In this journey with Owen, we are at the point in which we can see the top. We are almost there. Owen has fought so hard, and is so close to getting to go home, but there has been “rain” this week. I have become frustrated knowing that we are so close, and small obstacles keep getting in the way. But he continues to fight and we will continue to move forward with him as we approach the top. When we get home, what a homecoming that will be. It will be breathtaking just like the views from the top of that mountain.

As Jill and I journeyed our way back down the mountain, we both learned quickly that it wasn’t going to be smooth sailing. There were times we slipped or tripped ourselves up, but we finished the hike, and a sense of accomplishment came along with it.

The way down the mountain was a reminder to me that once we reach “the top” and Owen gets to come home, there are sure to be some slick and bumpy places. It won’t be smooth sailing, but it will be beautiful.

image image

This journey and fight we have traveled with Owen has been treacherous and tough, but it will be so worth it. He is battling head to head with a “terminal illness.” The same illness that took the life of his beautiful sister. To see how far he has come only gives me that much more hope for how far he will continue to go.

The hike Jill and I took is just one moment in the midst of the many we have lived. In that same sense, these several months we have been here at Duke watching Owen take on Krabbe disease will be a moment in the past as he continues to live life fighting and winning this battle. And Mabry Kate will continue to paint us rainbows as a reminder that she is always with us and that we WILL all be together as a family one sweet day.

A Story of God’s Timing

I’ve said it before, and I’ll say it again and again. God’s timing is perfect.

So many times, people pray prayers (myself included) and expect the answer to their prayer to be what they want or envision. The reality is, an answered prayer may not be the answer that you want.

I have so many stories about God’s timing that I can’t wait to share relating to Mabry Kate and Owen, but there are too many to share in one blog post. With that said, I will start with a story from Mabry Kate’s first birthday.

Mabry Kate’s first birthday was just a little over a month after the day she went to be with Jesus, and a little less than three weeks before we would meet baby Owen.

Kyle and I had decided that we wanted her birthday to be a reflection of all that she had taught us in her short time here, mainly to love.

Some of our wonderful friends had suggested that we declare her birthday a day to do acts of randoMKindess (notice her initials) in her memory. It most certainly was a fantastic idea that brought Kyle and I great joy on such a hard day. People were posting picture and status updates on what acts of random kindness they had displayed. It was such a blessing to see how many people were still being touched by her spirit.

As the day went on, I could not think of how I wanted to honor her in this way. Kyle and I went through the drive thru at Chick-fil-a and wanted to pay for the person behind us. It turns out their order was only around $2. It was kind and I am sure that person was appreciative, but we wanted to do something more.

The day lingered on, and it was getting closer to the time to meet close family and friends at her grave to release balloons. I made a quick run to the grocery store to pick up a special arrangement for her grave and some ingredients to make a birthday cake in her memory.

As I was standing in the line to check out, I felt very compelled to pay for the groceries of the person behind me. I kept wrestling with the idea in my head. What if it costs too much? What if they won’t let me? What if they think I’m crazy?

Silly thoughts kept creeping into my mind as part of me tried to convince the other part not to. Finally, on a whim I let the cashier know that I would also be paying for the groceries of the two ladies behind me.

I remember the cashier grabbing their things after all of mine had been rung up. In confusion, the lady kindly let the cashier know those were her things, and the cashier then let her know I was wanting to pay for her groceries.

I’ll never forget the surprised look on her face, and the face of her daughter. In a very appreciative yet still confused tone, she politely asked me, “Why?”

From there I was able to share with her Mabry Kate’s story and that, as part of her first birthday, people were doing acts of random kindness. We all began to cry, including the cashier, and then the lady told me her story.

The groceries I was about to pay for were for a baby shower of her other daughter. That daughter had been trying to get pregnant for nearly seven years, and now was pregnant and due the next month also. We all cried even more, and shared hugs.

Not only was Mabry Kate a blessing to her that day, but she and her family were a blessing to me. And the cashier let us know what a blessing it was to witness it all.

Not surprisingly, God’s timing was perfect. He knew that I needed that blessing in those sweet ladies that day. Quite obviously, it had been the hardest month of my life, and to do something good for someone in the name of our precious daughter, brought such joy to me that day. God also knew that that family needed to be blessed by Mabry Kate that day too, and He did not disappoint.

I know whole heartedly, that the voice inside my head and in my heart urging me to pay for that lovely family’s groceries was that of God.

God was able to turn a dull and boring trip to the grocery store into such blessings and joy that day. As hard as it was to celebrate our daughter’s first birthday without her physical presence there, that day was such a blessing. Not only was it a blessing to share the love we have for Mabry Kate and buy their groceries, but it was such a blessing to see such good being done that day, because of our sweet girl.

The topic of God’s timing will more than likely be a reoccurring theme for this blog. It is something that I have come to pay close attention to lately, and it never ceases to amaze me how involved God is in our lives. He orchestrates our lives, and yet there are times that we go about our day not giving him credit for his impeccable timing in all circumstances, and we should.

Many are the plans in a person’s heart, but it is the LORD’s purpose that prevails. Proverbs 19:21

How We Get Through

imageOften times people tell my husband and I that we have been so positive through these recent trials, or that we are really strong people to have dealt with such hardships the way in which we have. The truth is, it isn’t us who is strong. It is God who is our strong tower. He is our refuge from this storm, and every storm in our lives.

But what does that even mean? I’ve heard these phrases through the years, but we have really recognized it as truth in our lives as we have gone through the past couple years.

It means we have someone who loves us more than anyone else could dream of loving us. It means we have someone who is constantly ready and waiting for you and I to just lean on, trust and fall in the arms of. There is someone who will give you the rest that you need when you need it most. And believe me, we have needed rest from lots of things, as I’m sure you have too. That person is Jesus. Let Jesus give you rest.

My husband and I cannot imagine going through any of this without any sort of faith or hope in Jesus.

Since the day we temporarily lost Mabry Kate, I have said to many family members and friends that there are two things that get me through everyday. The first is that we will see her again.

I am reminded of this constantly. As I was reading a section from the book “Heaven” by Randy Alcorn, he mentions two verses that confirm the fact that she is with Jesus, and that we will be one day as well, following our deaths:

The same person who becomes absent from his or her body becomes present with the Lord. 2 Corinthians 5:8

The person who departs is the one who goes to be with Christ. Philippians 1:23

My husband spoke very powerful words to me not too long after Mabry Kate left her earthly body and became present with the Lord. I don’t want to elaborate on it too much for now, because one day I know he can use his experience to bring others closer to Christ, but he did say I could share.

I remember him telling me that before holding Mabry Kate as she took her last breaths, doubt would creep up in his mind every now and then about where we go after death. Not that he didn’t believe, but everyone has fears and doubts. Both in which Satan proudly uses to try and separate us from God.

Anyway, I’ll never forget him telling me that he will never doubt again after literally feeling and seeing Mabry Kate’s spirit (the part that really makes her who she is) leave her body and go somewhere else.

And I wholeheartedly agree. That somewhere else is with Jesus. We will be there one day too. We will see her again.

The other thing that gets me through each day is knowing that the time I have spent and will spend on this earth cannot touch the amount of time we will spend together in Heaven – with God, with family, with friends, with Mabry Kate.

My favorite reminder of this is in a song I used to sing to Mabry Kate along with “Jesus Loves Me.” That song is “Amazing Grace.” I now sing those songs to sweet Owen. One verse from that song brings chills to my whole body and joy to my soul.

“When we’ve been there ten thousand years,

Bright shining as the sun,

We’ve no less days to sing God’s praise

Than when we first begun.”

Ten thousand years? No less days than from the beginning? Wow! I’m only 29 years old now, and we could safely say that I’m already at least a third of the way through my life here on earth, so for 10,000 years to be nothing in eternity just amazes me!

Don’t get me wrong, I love my life here and everyone in it. It has been difficult, but well worth it. I am blessed and thankful; however, if I had written my own life story, it would not have gone the way that my life really has. But if I had been the author of my life, there also would have been no Owen (because he was a surprise so shortly after having MK) and other children’s lives would not have been saved through Mabry Kate’s suffering. Why it had to be our daughter and son that have suffered through this disease, I will never know. They are such brave and strong heros. I just look forward to the rewards that come from living life the way God intended, and those rewards include everything that I love, all together at the same time – God, my husband, Mabry Kate, Owen, my family, my friends, and the list goes on.

So for now I will continue to live my life fully in the way that God intended and the way that Mabry Kate taught me, but I will look forward to what the eternal future holds!

Reassurance

image

Since it’s Sunday, I want to share a powerful story that happened the day after we lost Mabry Kate. It was also on a Sunday. I have shared it with some of my close family and friends, but would now like to share it with you also.

Saturday night (the day she passed), we didn’t get home until around 1 a.m. in the morning. It wasn’t until around 4 a.m. that we actually went to sleep, and neither of us were able to sleep for very long.

I remember waking up early, and just drowning in my sorrows. There’s no other feeling like it, and no other way to explain it. I literally felt as though I couldn’t breathe. I was having the most difficult time envisioning Mabry Kate in my mind. I couldn’t picture her, let alone her with Jesus. I wanted to see her so bad. I couldn’t handle it, so I took it to God.

I remember saying a prayer for reassurance. I’ve always been someone who needs reassurance about anything and everything, from what to order at a restaurant to what to wear to work. I like for people to tell me, whatever the case, that “It’s okay.”

Anyway, I needed God to tell me that she was okay. I remember saying a prayer specifically for that very thing. I wanted God to reassure me that she was okay and that she was with Him. I remember I cried myself to sleep during my prayer.

When I woke back up a couple hours later, I (for the moment) had forgotten about my prayer. I got my emotionally drained, sleep deprived body up to let my dog out. When I opened the door, a book that had been placed in between our front door and our storm door, fell to the ground. I was a little confused, and picked it up. It was what looked to be a children’s book full of colorful illustrations, but it was called “Mommy Please Don’t Cry.” I set it aside until I got my dog back inside, but I couldn’t wait to read it.

After coming back inside with my dog, I picked the book back up. Despite the title of the book, I began to cry. I hadn’t yet remembered the prayer I prayed earlier. As I read it, I tried to envision her doing the things it described. The book was essentially a child’s description of Heaven and their feelings and actions now that they are healed and whole.

As I continued to read, I got to a page about her singing with the angels. I remember as I read that page, I kind of chuckled a little, because at the end of the page it said, “You’d be proud of me, I have a pretty good voice. I must have gotten it from you.” If you know me, you know I love to sing, but can’t carry a tune, so that made me laugh a little amidst my sorrows.

Anyway, it was when I looked at the illustration of the song lyrics on the bottom of the page that I got chills up and down my spine and all over my entire body. The lyrics were from the song “Jesus Loves Me.” I couldn’t believe it! This was my reassurance! “Jesus Loves Me” is the song I ALWAYS sang to Mabry Kate, from the day she was born until the very day she died, and most days in between. My cries turned to laughs. I had the deepest since of joy and reassurance that I could have ever imagined or prayed for. It is, by far, one of the biggest answered prayers I have ever received.

The person who put this book in between my doors (which happened to be a lady who goes to my church) had no idea how God used her that day. She, nor anyone else other than God, knew that prayer I prayed that morning. The timing in which she came to my house and placed that book in between my doors was impeccable.

God knows me better than any person could ever begin to know me. He knew I needed reassurance, and he knew that was the perfect way to show me. Our sweet Mabry Kate is happy, healthy, healed and in the arms of Jesus, and one day we will get to join her!

Always open your mind to God working and orchestrating miracles, small and large, in your life. Sometimes he works in huge, obvious ways, but many times it’s in the most intricate and subtle ways. Don’t lose sight of Him, so that you won’t miss out on the gifts He may be trying to give to you!

What I Would Tell My Younger Self

imageBare with me, this might be confusing, but I promise there is meaning to my madness.

Very often I wonder that if I were my younger self and could flash forward into time, what would I think about certain situations I have been through this past couple years? For example, as I was getting my tattoo done the other day, I wondered what my younger self would’ve thought the MK and OB stood for. I also wondered if I would question why the MK was between a cross and the OB between an arrow. What does that mean? I would obviously know these letters had to be in reference to someone I truly care enough about to get a tattoo for, because I always swore I would never have one for fear of it being permanent. Would I realize that the MK is between a cross because this person went to be with Jesus? And that the OB was between an arrow because this person was fighting a huge battle?

That then led me to think about the day that Mabry Kate passed away. What would my younger self have thought about that day? I kind of envision it going something like a scene from the “Christmas Carol” when the Ghost of Christmas Past escorts Ebenezer Scrooge through the past, only I always picture the future. What would I think? What would I say? Would I do anything different with the knowledge of what my future held?

Like I said, these thoughts run through my mind often with various situations. When I say “younger self,” I’m speaking of myself anywhere between the ages of 12 up until Mabry Kate came along when I was 28. My younger self had a huge fear of death. I’ve always feared losing my parents, my sister, my husband, my best friend and the list goes on. So when I picture my younger self catching a glimpse of the future, that I have since lived out, I picture her terrified of the future and speechless on what to say about it. Which leads me to three things I would tell my younger self.

#1 You may not think so, but you can get through this, but only with God’s help.

Just like any mother, I would cringe at the thought of losing my child, even before I had one. It’s nothing that anyone wants to enter their mind. We dismiss it, thinking, “That would never happen to me.” Or sometimes we feel like it’s sure to happen to us if we even give it a thought. Regardless, I would have never thought I could deal with such a loss, and I couldn’t have without God. I’m not sure how or if anyone gets through tough trials without faith in God. I’m definitely not perfect in my relationship with God, but I trust Him, and I trust Him to continue to get me through this life and everything it throws my way.

#2 Let go of your worries and fears and hand them over to God.

As I’ve said earlier, I’ve always been fearful and worrisome about all kinds of things, but especially death. Don’t get me wrong, I still worry about things, just not like I used to. I would tell myself to stop worrying. Worry is of the devil, and does nothing but cause added stress and anxiety about things that haven’t happened and may never happen. Why waste energy on something you don’t even know is going to take place? I would tell myself to just live one day at a time and cherish every moment without the burden of fear or worry. Just give it all to God.

#3 No matter how much you want to be, you are not in control. God is.

I’m guilty of feeling as if I can control every intricate detail of my life at times. Often, with Mabry Kate, I felt as though I was in control of her care and that I could keep her comfortable and provide every need she had. While I could intervene and do things like suction, up her oxygen, monitor her pulse and O2 levels, give meds as needed and the list goes on, I was never in control. God was, and still is. I know I have always thought this in my head, but I don’t think I ever truly believed it or realized it until she passed away. I remember waking up the morning after and feeling helpless. I felt like I was suffocating or drowning in my own tears. I could barely breath. Up until that point, I was able to care for her, and was deceived by the thought that I could “keep control” of her breathing and overall health. Now she was physically gone and there was nothing I could do. I couldn’t touch her, kiss her, hold her, suction her, give her meds, up her oxygen, nothing. I was not ever and will never be in control of any situation, no matter how bad I wanted to be. God is and will always be in control.

The most important thing I would tell my younger self is that God’s plan doesn’t always make sense to us, but it is perfect. One day we will see all of His amazing works and how they come together for the good of those who love Him. We live in a broken world, but in time, we will be restored, this earth will be restored, this universe will be restored and the glory of God will shine upon us. It will be then that everything will make sense.

“For I consider that the sufferings of this present time are not worthy to be compared with the glory that is to be revealed to us.” Romans 8:18.

Worth the Wait

IMG_2546imageWelcome to the new TeamMKO blog! I set this up to provide memories about Mabry Kate, updates and adventures about Owen and my thoughts and outlooks on things in this short life. Hope you enjoy!

For my first blog post, I want to express my thoughts on waiting. This is something my husband and I have done a lot of throughout the past couple years, and more often than not, it can be frustrating.

Time is something that always seems to work against us. When you’re waiting for something, time seems to slow way down. When you’re having a great time, time seems to fly by. It seems it is always working in the opposite way we would like it to.

Throughout the past year to two years, Kyle and I have really gotten to know what it’s like to wait. We waited almost a year and a half to become pregnant. I know this isn’t as long as some couples have to wait, but for anyone who has struggled to get pregnant, waiting for it to happen is really tough. I thought God was trying to teach me patience in the waiting we experienced becoming pregnant, but little did I know He had more to teach me about patience in waiting.

As you probably know, once symptoms began to show for Mabry Kate, we waited almost 4 months to get her diagnosis. All the while, she continued to regress. We felt helpless. Once your child is given a terminal diagnosis with a short life expectancy, unfortunately whether you want to or not, you often find yourself waiting and wondering when the inevitable will happen. This was a daily struggle. I never wanted my mind to go there. I always wanted to enjoy each and every moment we had with her, but sometimes (despite your best efforts) your mind goes where you don’t want it to.

Once we found out we were pregnant again, we waited yet again to find out if he had Krabbe also. Once Owen was here, it became an even bigger waiting game. We knew going into it that we would be here in Durham for nearly 6-8 months, so when we arrived back in March, the waiting to come home with a happy and healthy baby began.

With Owen’s transplant, we waited for the chemotherapy to be over, we waited on his hair to fall out (which thankfully never happened), we waited on the effects of the chemo to go away, we waited on the transplant, we waited on him to engraft,  we waited on his breathing to get better, we waited for the word “discharge” to creep out of the doctor’s mouth, we waited on the hold up the insurance gave us just before discharge, we waited until the day we could actually take Owen outside, we waited 110 days to start as much of a normal life as we could with our new son.

And now the wait continues. We wait for his body to continue to improve enough to come home, to our real home, in Tennessee. Waiting has seemed to become the story of our lives. When will all this waiting stop? Unfortunately, I don’t think it will.

In addition to everything we continue to wait for with Owen, we will always have a longing in our hearts to see Mabry Kate again. So we continue to wait. We will be waiting for the rest of our lives. I have recently been reading a book simply called “Heaven” by Randy Alcorn. I wanted to get a good idea of what Heaven, where my baby girl is, is like. I want to know what it will be like when we are all together as one big happy family.

As I was reading it, I came across a section about time in Heaven. It discusses how there has always been a misunderstanding that “time will be no more in Heaven.” This couldn’t be further from the truth, because, as Alcorn mentions, there are numerous references to time in Heaven in scripture. Some of my favorite examples he lists are:

  • “Heaven’s inhabitants track with events happening in time, right down to rejoicing the moment a sinner on Earth repents (Luke 15:7).”
  • “Paul spoke of Heaven in terms of ‘the coming ages’ (Ephesians 2:7).”
  • “We’re told that ‘there was silence in heaven for about half an hour’ (Revelation 8:1).”
  • “Martyrs in Heaven are told to ‘wait a little longer’ when they ask ‘how long’ before Christ will judge the inhabitants of the earth and avenge the martyrs’ blood (Revelation 6:10-11). Those in Heaven couldn’t ask ‘how long’ or be told ‘wait a little longer’ unless time passes in Heaven.”

All this to say, since there is time in Heaven, that means there will be waiting also. The difference is that, in Heaven, time will be on our side. Everyone will be in their perfect form, there will be no more sickness or death and there will be no more tears. With all of that in mind, waiting won’t be painful in Heaven. My favorite part of this section of the book “Heaven” says this:

“When we say good-bye in Heaven, we’ll know people won’t die before we see them next. Time will no longer be an hourglass in which the sands go from a limited past to a limited future. Our future will be unlimited. We’ll no longer have to ‘number our days’ (Psalm 90:12) or redeem the time, for time won’t be a diminishing resource about to end.”

Though the waiting we go through now can seem long, tedious and painful, ultimately it will be worth it! The pain and suffering we experience now won’t be given a second thought when we are in Heaven. Thank you, Father, for the opportunity to live eternally in Heaven, where time is on our side.