The handoff

I’m not a morning person. At all. My husband could tell you, my college roommate could tell you. Especially my parents could tell you. But, there’s one place I actually love getting up early, and that is at the beach. It goes back to being a kid and going every summer. We were far from rich, but my parents invested in a beach condo timeshare, something we made so many memories at. We had a balcony facing the beach, and my dad would get up early with his coffee and go sit on the balcony before the sun was even rising. I used to think he was crazy, I mean vacations are for sleeping in! Then he woke me one morning, offered me some coffee and I was hooked. There’s just something about watching the night turn to day that is fascinating and inspiring. It’s a slow handoff from the moon back to the sun. It is beautiful and peaceful and just does something for my soul. So now, as an adult, when we go to the beach and my dad isn’t with me, I still love to get up and watch the handoff. I think of him and will probably send him a picture or text, but also just pray and reflect. I do my deepest thinking at the beach. It reminds me of just how big and powerful my God is. But it also reminds me of how creative and thoughtful he is. No man can take credit for the wind and the waves, or the colors of the sunset. God is the ultimate artist. 

So here I sit after watching the sunrise, (another handoff) while my sweet husband sleeps. We got away for a few days for our anniversary (which is actually in February). My girls are at their grandparents house getting farm time. It’s hard for me to leave them, and they don’t make it easy. Especially after all we’ve been through. But it does my heart good. Nick and I have been married for 15 years now. The last year and a half have been difficult fighting Jada’s brain tumor while still trying to build a church. It’s easy to put our marriage on the back burner when tough times hit. But you have to prioritize it, because it is the backbone of your family. For us, in the darkest times, it felt like the sun would never come up, but like clockwork, it always does. 
I remember after Jada’s first surgery to remove the tumor, I took a picture out of her window of a beautiful sunrise. It was a special reminder to me after several long, difficult nights. His mercies are new every single morning, great is His faithfulness. Even after the darkest of times, we can still have hope because the sun IS coming. There will be that handoff again, bringing us into His light. Our situation may not change, but it may look different as the light shines on it. 
We just finished another Memphis trip. We are thankful that Jada’s scans results came back stable. But we are now talking about her third surgery to try and bring back some of the smile she lost from the tumor. Though we would love an instant miracle, that is not the path God has for her, apparently. So we will keep going with our new normal, praying it will get better. We keep believing in a miracle, but trusting God for His plan. God has shown Himself to be so faithful to us, just as the sunrise-the handoff. For that, I am so very thankful. 

“Great is his faithfulness; his mercies begin afresh each morning.”

‭‭Lamentations‬ ‭3:23‬ ‭NLT‬‬

http://bible.com/116/lam.3.23.nlt

Making memories (and turtles)

I’m trying to soak in more than just the sun while we are at the beach on a very short getaway. I’m soaking in each wave, each smile and laugh. The wave jumping and body surfing that elicits screams of sheer enjoyment from my sweet girls. The love of my life showing them the art of finding a good wave and pointing out fish to look at. When she’s riding waves, Jada isn’t thinking about her tumor, she’s feeling normal and loving life. 

In ten short days, we will be back at St. Jude preparing for her next surgery- cross facial nerve graft. After that she will have several months of not feeling normal. She won’t be able to be physically active, 6 weeks of drinking meals through a straw, plus starting 6th grade. It will not be easy but with God and our family, she will get through it. 

But she doesn’t have to think about that right now. Yesterday we made a sand turtle together and were quite proud of it. But we are making more than turtles, we are making memories that will carry us through the difficult times to come. We are growing and learning from this trial. One thing it has brought us is perspective. Treasure each moment because you never know when the next moment will change your life forever. I see other parents sitting and reading a book or on their phone. I find myself taking way too many pictures and watching them enjoy life. Then I have to join in. 

Then this morning Sydney wanted to build a dolphin, so we got to work.

So my advice to parents in all walks of life, no matter the stage your children are in- soak up each moment you can. You won’t get this summer back so don’t let it go by without taking all you can from it. Get in the water with them, sit in the sand and build something with them. You will never regret the time you spend with your children but you will regret not spending enough time with them. 

“This is the day the LORD has made. We will rejoice and be glad in it.”

‭‭Psalms‬ ‭118:24‬ ‭NLT

Moments of Peace

Well, I am in the middle of a crazy summer. I have found moments of peace in the midst of it all, and I am so thankful for these type moments! We went back to St. Jude last week for Jada to have her six month MRI’s.

MRI #5 (brain)

MRI #6 (spine)

If you are my Facebook friend or follow our Prayers for Jada page, you are aware of the outcome already. It is amazing the difference that six months can make. Back on November 30th, she had her very first MRI to see what was causing her facial paralysis. I was there with her and stood with my hand on her feet for the 30-45 minutes that it took. I do not like enclosed spaces, I’m pretty claustrophobic. So seeing my baby in this thing that made a lot of loud, strange noises had me pretty freaked out. I was crying and praying the entire time, and wondering if I was making a big deal out of nothing.

Fast forward to last week and I sat and read some things while she was in her MRI. It was her 5th and 6th ones and I am a bit more relaxed now. What was I reading? Information that the plastic surgeon gave us on the procedures that are to come for our sweet Jada. I was reading them in faith. If her MRI’s showed no growth of the residual tumor, she would be cleared to have the first procedure done- A cross facial nerve graft. I looked over and over at the before and after pictures in this article. I pictured her before and tried to picture what her after pic will look like but that was hard. I want it to look like her smile used to look. But reality says that it will never be exactly the same. I struggle to look at old pictures of her now. It brings me joy but also brings pain and grief knowing there is no going back to that time, that smile. But we are amazed at what they can do now! It isn’t just about a smile, it is about her way of life. This surgery will eventually make it to where she can drink without a straw, speak clearly again, even feel parts of her left side again! You don’t understand how important these things are until it happens to you.

Though we had prayed a lot and had many praying, we were still very anxious to find out results from this MRI. Our true prayer and belief was for the residual to be completely gone- a miracle. But it was still there, and stable. Which means she has now been cleared to begin surgery for facial reanimation. The first phase being the cross facial nerve graft. So it is with excitement, anxiousness and still some fear, that we await to hear from the plastic surgeon’s office to set a date for the surgery.

It is hard not to feel fear for this entire situation. There are still questions to be asked, and we know the post-op will be a long process of healing. I am very nervous for her as these surgeries have a different result for each patient. But so excited that she has this opportunity, it will be something that, years from now, she will be so glad she did.

 

A beautiful moment with Jada watching the sun set from the top of the Bass Pro in Memphis

Through it all, God continues to speak to me in moments of peace. Sometimes, honestly, it is a correction telling me to get my priorities in balance and put Him first. Other times it is a reminder to be thankful and to “praise Him in the storm”. I am so thankful for these moments of peace. As I type this, a storm is brewing outside ironically. My youngest, Sydney, woke up hearing the thunder and was afraid. As I spoke peace to her, reminding her that I’ve got her, and she is safe, God does the same to me. I close with a quote from my Jesus Calling devotional (by Sarah Young) yesterday:

…your praise and thanksgiving are distinctly audible in heaven. Your petitions are also heard, but it is your gratitude that clears the way to My Heart. With the way between us wide open, My blessings fall upon you in rich abundance. The greatest blessing is nearness to Me– abundant Joy and Peace in My Presence. Practice praising and thanking Me continually throughout this day.

And a scripture close to my heart today…

When I am afraid, I will trust in You. In God, whose word I praise, in God I trust; I will not be afraid. What can mortal man do to me? – Psalm 56:3-4

We are so thankful to God for St. Jude!

The Power in Letting Go

Yesterday I watched my 11 yr old daughter ride off into the sunset (actually sunrise) on her very first road trip/vacation without me. Y’all, I can’t describe in words the wide range of emotions I felt in that moment. Under normal circumstances I would still have a hard time with it, but almost 6 months after brain surgery and dealing with lots of damage from the tumor? Hard is an understatement!

But, I had to let her go.

I had to let go.

Of course I still have my baby, my Sydney. Oh I’m so thankful for this spunky yet sweet sensitive girl! 
I think back to the moment we had to kiss Jada and watch her be wheeled into the Operating Room. I was an absolute mess. My dear husband was able to go further with her while Sydney and I had to walk out to the waiting room. The hallway leading out seemed forever long, yet not long enough. Once I went through those doors they would be one more thing separating me from my precious girl. But I had another precious girl to worry about and at that moment she was worried and crying and clinging to my arm. But the crazy part is, she was actually worrying about me just as much! In that moment we needed each other. We walked out of the doors and sat down in the waiting room. You’d think we were glued together. We sat there and cried together for what seems like an eternity. I comforted her, she comforted me, it was altogether heartbreaking and scary, yet amazing at the same time. I was letting go of one child and clinging to the other.

That still wasn’t the first time I had to let go and trust someone else with my daughter Jada. I mentioned in my last post that she was a preemie. I had no choice but to trust her into the Doctors’ and nurses’ hands as well as the machines. It was a terrible feeling knowing that they could care for my new baby better than me.
But that was best for her at that moment.

They were qualified for what she needed right then. If I had tried to take over and say I could do it because I was her mom, that wouldn’t have turned out well. I had to trust someone else with my baby because they knew what to do to make her better. And I had to trust God with her too, because, well, He’s God and He sees the big picture for our lives. We put verses in her isolette in the NICU as a reminder of that (Romans 8:28 and Jeremiah 29:11).

But because I did place her in the right hands, she got better and she grew. Then they placed her back in my hands once she was able to come home. I felt so inadequate and hoped I was up to the task. Years later I still don’t feel adequate but I do my best with the Lord’s help and a LOT of grace.

Back to yesterday. As Jada left with her MiMi, aunt and cousins to go out west on their trip to see the Grand Canyon, I thought of how hard it is for me to let go. You’d think by now I’d have it down, as much practice as I’ve had. But not so much.

I am wondering if God is trying to teach me through this, and if so, that kind of scares me. I had to let go and trust Him when she was born. I had to let go and trust Him when we found out she had a brain tumor and went in for surgery. And now, 6 months later, I’m letting her go again to feel some independence and have her own adventures apart from Mommy, Daddy and sister.

At first I said no way. I didn’t want her to go. She has so many extra things added to her routine. Traveling these days for her is not simple. She’s got her physical therapy exercises plus her lens and eye care stuff. But the Lord worked in my heart and I now realize how good this will be for her. She lost some independence with the surgery and since then we’ve had to be especially close by and help her with a lot. She has been slowly working on gaining it back, and getting good at putting her lens in her eye. (This is difficult to do when you can’t feel it.) she kept assuring me she would be fine. I know she will. She’s in good hands. But 9 days and hundreds of miles apart, I hope I will be fine!

So, I let her go. Again.

I trust God to bring her back to me in 9 days-8 now! Once again, my J is where she needs to be for this part of her life. To grow and learn, to gain confidence in who she is when her parents aren’t there. To feel more grown and independent. Do I like that? Not really but I have to accept it. I have to let her grow. And in doing so, I grow as well.

When Jada does her physical therapy she has an exercise that uses a resistance band. One rep doesn’t count until she brings them back slowly. She pulls them toward her and works her muscles but she’s also working them when she lets them go back releasing the tension. She’s growing stronger when she pulls them to her AND when she lets them go slow and controlled.
I see now that I must do the same. Like the rubber band, I must continue to pull her close and enjoy the stage that she’s in. But I also must give her space and let her go in a slow and controlled way. Of course, I am checking on her a lot during the day, but also letting her enjoy the ride. I am sad in a way that I won’t be able to experience her first time seeing the Grand Canyon. But I won’t always be with my children for every experience they have. And I have to be ok with that. I look forward to hearing the excitement in her voice as she tells me all about it. At that point I’ll be pulling her close and hanging on every word- even just over the phone.

As hard as it is for us as parents, there is power in learning to let go-not be irresponsible and give them too much freedom, but in a controlled way, with someone you trust. But as for my “baby”, well not quite yet. I will let the Lord guide me and prepare me for that. And right now she’s waiting for me to get in the pool with her. I’m drawing her close these 9 days, because that is exactly what SHE needs right now.

 

 

 

 

And we know that in all things God works for the good of those who love Him, who have been called according to His purpose. Romans 8:28

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11

 

Beautifully Crooked

One day- no, one moment- can change your life forever. Our family had a moment like this on November 30, 2015. It was supposed to be a routine MRI. I told her we would go get ice cream when it was done. I wasn’t able to follow through on that promise. What followed was the most terrifying day of my life since the day she was born (that’s a whole other story!).

My 10 year old daughter, Jada,

The moment we realized her smile had changed dramatically.

had what we were told was Bell’s Palsey. Her left side of her face had been paralyzed for a month. I took a picture of her one day during a family bowling trip. “Smile!” I told her. She replied “I am smiling!” But no, she was not. It was only half of a smile. We ended up being referred to a pediatric neurologist who diagnosed Bell’s Palsey after a very thorough examination and put her on steroids and antivirals. But it didn’t help. That is what led us to the day that changed everything. We didn’t expect to find anything abnormal. She seemed pretty normal other than being a bit clumsy sometimes. So I didn’t know what to think when they got her a wheelchair and sent us straight to the neurologist’s office. I thought it strange, “My daughter doesn’t need a wheelchair, she’s fine. It’s her face not her legs that are paralyzed.” I texted my husband to let him know what was happening. He of course was wishing he had come and began to panic. He was an hour away.

Meanwhile, I tried to remain calm and collected for Jada. I had to be strong and not show how nervous I was. Then the Dr. Asked me to step into another room. With my husband on speaker phone, we heard the words we were dreading. “Your daughter’s MRI came back abnormal. We found a growth.” I went numb. My husband began to panic over the phone and made arrangements to come right away. I didn’t let it get to me yet, I couldn’t fall apart in front of her. I just couldn’t. It was a long afternoon of waiting. Waiting to be admitted, waiting for my husband, for the neurosurgeon, and waiting to fall apart. Then came the moment I had to tell my sister over the phone. It was the first time I had to speak it out loud myself. I stepped into the hallway where I could still see my sweet Jada playing on her phone through the windows in the doors. I began to talk but the word ‘growth’ could not come out. I couldn’t breathe, it hit me. This isn’t just going to go away by itself. I shuttered to think of what she was about to endure. Feelings of helplessness flooded over me once more. I had felt that before going to see my newborn baby in the NICU almost exactly 11 years before. We have called her our little miracle. She was such a strong little preemie, born at only 1 lb 10 oz.  We thought all the hospital stuff was behind us. I was always so thankful she didn’t remember any of it, she knows just what we’ve told her. But this, now, she will never forget. She’s reminded every time she looks in the mirror, or has to find a straw to drink with. Or when the itches underneath her skin come and she can’t scratch them away. And I can’t take it away. The days of kissing boo boos to make them better is long gone. 

When things are out of our control, we have to trust in our God. We don’t know why our daughter has been chosen for this journey, but we know He will never leave us nor forsake us. We also know God’s word says we must count it all joy when we go through trials. In my fear and trembling, He speaks peace. Though I desperately want to hear it, if I let the fear cripple me, I will not hear it.

Yes, we have a long journey ahead of us. But we trust in our God and we will not be shaken. My Jada smiles her new, beautifully crooked smile. And she is my hero as we walk this journey together.

Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.                                    James 1:2-4

The Lord himself goes before you and will be with you;  He will never leave you nor forsake you. Do not be afraid; do not be discouraged.                                                     Deuteronomy 31:8

I keep my eyes always on the Lord. With Him at my right hand, I will not be shaken.          Psalm 16:8

First blog post

My first blog post. Well, actually this is my third time writing it. I keep having to stop writing to do something else and when I come back it is gone. But I’m determined to get this first one posted, and I will.

I never thought I would start to blog. I guess this is more of a journal for me to put “pen to paper” what all has been on my heart. The only reason I’m journaling here instead of privately is because God told me to, lol. I’m not the only parent that has had to watch their child suffer. In the moment everything happened and the weeks to follow, I had few words to share. My husband did most of the public updates on Facebook because I just couldn’t. My energy was fully focused on Jada and caring for her and making sure my youngest daughter Sydney knew that she was still loved and was still important.

I am finally finding my voice about all we have experienced and continue to go through. My prayer is that it can resonate with someone else as well. 

So, if you have followed our journey so far, praying and supporting us, Thank you! Maybe you’ll enjoy finding out more of our journey on a deeper level. If you are a parent of a child diagnosed with a brain tumor, it is scary, I know. But you are not alone, and will find strength you never knew you had.