Let's Be Brave

Upcoming, we have two of Jonathan's surgeries written down for the books. The first surgery is scheduled to take place on May 9th. This will be the first lip surgery repair. The second surgery is scheduled for September 12th. This one will be for his palate. In all honesty, I have mixed feelings about the whole thing. Why? Because I've fallen in love with this baby who has a bigger grin than I've ever seen. And let's face it! He is constantly smiling. His smile doesn't just start with his mouth but also fills his cheeks and widens his eyes. However, I am also nervous about the whole surgery procedures of handing such a little guy off to people while having him put under and also experiencing pain.

On the other hand, I know his quality of life will improve with the surgeries. His eating will improve as he'll have a better suction with his lips put together. Even more, he won't be swallowing so much air along with having constant drainage going straight from his nose into his mouth. I am super paranoid about him getting sick at this point as I know that would be a nightmare for us both. Having the surgeries will take some of that worry away and I will be more likely to get out in the public with him. For now, we are in a season of staying home and away from germs as much as we can.

After having the NAM in for a total of 33 days, we went in to see Dr. Granger this last Monday. He went ahead and added the nose stents. This has changed things a bit for him. I wish I could say everything is peachy-keen. But this past week, it has not been that way at all. He is fussier and more irritated. And why wouldn't he be? He has something tightly set into his nose that not only feels like fingers in his nose constantly, but it also creates lots of friction leading to sores and nose bleeds. I am finding that I have to take it out when it gets too painful to give him many breaks as he adjusts to the new addition to the NAM.

So he's angrier right now with it and sometimes I just wish I could throw in the towel. It's hard to be a mama of a baby who is so uncomfortable. Yet, I know this procedure is going to be best for the long run. And not using it, I will always look back and think that things could have been better for him if I had used it.

But God is good and I try to focus on being thankful for things. I am thankful for the medical insurance, healthcare, and modern medicine that allows for Jonathan to thrive. I am thankful for older siblings who constantly pour out love to him. I am thankful for extended family and friends who have shown tremendous encouragement to us. Also, I am thankful for being this little guy's mom and getting to be apart of something special, even though it's hard.

I once read a quote that said, "Do not pray for the hard thing to go away. Pray for the bravery to overcome the hard thing." It really resonates with me during life moments like this one. I can't pray for the cleft lip/palate to go away. But I can pray that God gives me a bravery to overcome the hard thing. And with His help, He will. He has helped me so many times already. Often, I feel like having a pity party. There have been many times that I've cried. But all of the hard things about this process have given me perseverance and hope for greater things to come.

Romans 5:3-5 Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God's love has been poured out into our hearts through the Holy Spirit, who has been given to us.

We all have hard things to go through in life. We can pretend everything is fine and life is good on the outside. But we are all torn human beings on the inside. We may not reveal it, but we all have our battles. I don't know if it's partly because of the social media era where we put our best of everything out there. We only tend to show the happiness of life. Even I like spreading that unspeakable joy with others. Smiles often lead to more smiles and that's been proven. Still, we must also remember that we are all trying to be brave on the inside so we can carry on for the outside.

Nonetheless, please allow me to be an encouragement to you to keep on persevering through those days where it's hard. Allow it to build your character and bring more hope in the One who loves you unconditionally. Look forward to what lies ahead and remember that throwing in the towel only leads to defeat. That's what the enemy wants from you. He wants you to feel defeated. But God wants you to put on that full armor for Him so you can stand firm. Most importantly, be sure you keep looking to Him so He can make you brave.

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So far, we have raised $580 for the Mia Moo Fund through out t-shirt sales. The proceeds for the sales goes to help those needing financial assistance for cleft repairs. We have been blessed to have such great insurance that covers most of Jonathan's appointments and procedures. However, many families are left falling into deep debt.

This t-shirt fundraiser was created so I could help raise funds for this organization that gives back. So far, 18 families have been helped in 14 states because of people like you who have donated and bought shirts. Thank you so much!

When I set out to create these t-shirts to help raise money, I figured that if anything, our own family here would buy them as our contribution. I figured we'd buy up about 10 shirts to have and wear for Jonathan's surgeries to show our support. And that money from those shirts would be the money that ends up being donated. I've been blown away by your support. Not only have we sold 46 shirts, several of you have made extra donations as well. You have brought tears of happiness to my eyes. All of that money will be such a blessing to someone else. And when I see you wear your shirts during Jonathan's surgeries, I know he will feel so loved as well. Thank you all so much!

There is just a little time left to order if you would still like to participate. The fundraiser ends on February 8th. After that, the t-shirts go to print and will arrive to you around February 25th. Please don't miss out! Let's raise the bar high and see what we can do to give hope and a smile to someone else. Go here to purchase a shirt: https://www.booster.com/mia-moo-fundraiser

Milestones

Yesterday was the two month mark for when we first met Jon Luke face-to-face. He has accomplished those milestones like other two month old babies. But instead of listing those, I'd rather list those milestones that are new to us as parents.

I've mothered six other babies through this stage and yet have learned new things this time around. I would love to share what I've learned this time with you.

1. I have a new set of eyes for the world around me. I can spot those with birth defects a bit more. In addition, I carry with it a new compassion for those having been through similar situations. It's sort of like that in many areas of life. If you've been through cancer, you understand those going through it more. If you've been a military spouse, you understand deployments and running a household on your own more. You can easily connect with those who've faced similar situations and take a walk in their shoes. That is what I see and feel for those mothers who've cared for someone born with a defect or disability. 

2. I've learned a whole new meaning on the word patience. Patience is more than just waiting your turn but putting yourself along with your desires aside. You realize a lot of things aren't very important. What is important is the opportunity to help another, carrying with it a new perspective on time. There is more time required for feedings as well as cleaning the necessary supplies for the NAM. I set aside time for many doctors appointments and patience for the wait for Jon Luke to be cared for by them. But I am okay with it and the wait is worth it.

3. I've learned that even though he will have surgeries to repair his lip and palate, God formed him this way. And the way he is now is perfect not only to God but to me too. I love the way he smiles with his cleft smile. Yet, I know I will miss it once it's changed. I love every part of the way God formed our son and I will be sad when they change it, even though it'll be for the best.

4. Often times, we fear the unknown and worry our hearts about it all. The reason we are so anxious about things in general is that we create a fear on what will happen or how things will go. But that doesn't stop us from going through something. It's still going to happen. It's typically out of our control. So that fear we developed over whatever it is that is worrying us is not worth the fret. Before Jon Luke was born, I was anxious about how I would be able to help him not knowing exactly how it all would be. Basically, I worried myself over nothing. I was wrong. Everything is just how it is supposed to be. It's all part of God's plan and future for my life. And I wouldn't trade any of it for anything different. I love being a cleftie mom.

5. I have joined cleft forums and I've seen daily many littles having their surgeries and appointments. I am able to be more prayerful for others. I see the worry in those mother's hearts when their wee ones are taken back to be sedated. I watch them come through and I've heard those mother's words for prayers when there are close calls during the surgeries. We will be in that place soon. Until then, I watch the encouragement and prayers being lifted for them on a daily basis. The power of prayer is amazing. How neat that so may can come together all over the world to pray for one another. These are people they don't know beyond a picture posted and the mother's words asking for prayers. It's amazing the community that is formed.  

There will be more new milestones for me along the way. However, this is it for now. As far as updates go, Jon Luke went on to see Dr. Granger last week. He re-adjusted his NAM and sees lots of improvements already. We go in again next Thursday and he will soon be adding nose stints to help shape the nose. Our little guy is doing well with the NAM and is able to eat a bit easier with the more closed-off artificial palate in place.

As for the rest of our crew, we are having fun enjoying life. We play with powdered sugar, run around outside as much as possible, play pirates, dance to music, and anything else we can find to have fun. God is good, y'all!

The Movement of Unspeakable Joy

I have two favorite sayings that I try to apply to my life on a daily basis. The first one is, "Today is a good day to have a good day." The second one is, "If you smile at the world, the world smiles back." My favorite Bible verse is from 1 Thessalonians 5:16-18 which says, "Be joyful always, pray continuously, and give thanks in all circumstances; for this is God's will for you in Christ Jesus." This is my life verse and the one I strive to do each day.

Put these three all together and you've got what I call the "Unspeakable Joy Movement." This is where we take the hard, everyday things thrown our way and push through it with a joy that can only be made possible by knowing Jesus. It's a hope for things to come. It's a simple smile we give to that stranger we passed by in the store. It's the giggles heard from children over the simplest thing. It's the warm cup of coffee on a rainy day.

Joy can be found all around us. It's in the attitude we have despite the hard circumstances we face in life: debt, marriage issues, relationship problems, grief, health problems, etc. If we change our attitude, we can change our point-of-view. God doesn't tell us to be joyful sometimes, but always. Sure, it's not easy to do. There are days I am dead tired and just don't feel like smiling. That is the case for all of us. But I don't want to give the devil that satisfaction of being a grump because of this or that going on. Of course, I will fail along the way. We all do! But my hope is to encourage you today to give it all you've got to live life with unspeakable joy.

The more you do it, the better you feel. It's true! Don't believe me? Start out by smiling at the next person that you see. Then do something nice for someone. How did that make you feel? Great, right? So keep on at it and let's do this together.

(I am smiling right at you to get it started! Smiling is my favorite way to start the day!)

Here's something you can do today. Take a picture of something that brings you unspeakable joy and share it on social media. Use the hashtag #unspeakablejoymovement and let me see those things that make you happy.

Here's what brought me unspeakable joy today. It was a handwritten letter in the mail from one of my dearest friends. Anyone who knows me knows I love handwritten letters.

Do you need some encouragement today or can I pray for you? Email me at unspeakablejoymccoy@gmail.com. Send me your prayers requests and mailing addresses and I will send a note your way. Want to play Mail Tag? What is that, you ask? Go here to learn more: http://unspeakablejoymovement.blogspot.com/2015/07/tag-youre-it.html
 And here: http://unspeakablejoymovement.blogspot.com/2015/04/snail-mail-challenge.html

Don't forget to share your pictures today or any day of things that bring you Unspeakable Joy!

Also, don't forget to check out my fundraiser to help kids with cleft lip afford a great smile. Go here to see how you can help out and to learn more: http://unspeakablejoymovement.blogspot.com/2016/01/cleft-lip-and-palette-fundraiser.html

Cleft Lip and Palette Fundraiser

The past few weeks I have been picking my brain as I think of a way I can help others going through this experience of having a child born with a cleft lip and palette. I had heard of the Mia Moo Fund through Mia Robertson on Duck Dynasty. Mia Robertson was born with a bilateral cleft lip and palette just like our little Jonathan. Their stories are very similar, although; Mia's story is farther down the road than our own.

Her parents started a charity where people can donate money and the profits go to help those who can't afford the costs of the repairs of cleft lips and palettes. The money also goes to help spread awareness and research as little is known about the cause of it.

I decided to start this t-shirt fundraiser for this cause. I've designed two shirts available for youth through adult sizes. Both are for sale through February 8th and you can receive your shirts two weeks after that date around February 25th. The shirts ship directly to you from www.booster.com, which is a fundraising website. All the proceeds from the shirts will go directly towards the Mia Moo Fund.

In addition, if you would like, you can wear your shirts on the days Jonathan has his surgeries to show your support. If you are on Facebook or Instagram, you can use the hashtag #jonlukessmile while posting a picture of you or your family wearing it when Jonathan goes in to have his surgeries. Or you can email/text me a photo and I will be adding your pictures to an album I am making just for him. What love he will feel seeing all of you wearing those shirts in support of him. I will update you on when he has his first lip surgery, which will be around April 2016.

The t-shirts are $20 + shipping and are available at these two fundraiser links. Both designs can be purchased in adult and youth sizes. This is a great opportunity to teach your children about cleft lip and palette as well as letting them share about it with others. You may also make an extra donation towards this fundraiser when purchasing your shirt.

 Please share about this fundraiser on your Facebook and social media sites. Invite your friends and family to support this cause. I would love to sell 50 shirts at least of each design so we can bless another family needing help through this fund. You are welcome to email others this blog page as well. Thank you for your support and God bless!

To purchase the first shirt, go here: 
https://www.booster.com/mia-moo-fund

To purchase the second shirt, go here:

https://www.booster.com/raising-funds-for-cleft-awareness

To learn more about the Mia Moo Fund, go to http://www.miamoo.org/.

Exist

Yesterday I heard a fascinating story on an elevator ride down from a doctor's appointment. A man probably in his late forties was smiling very happily and said, "Coming from the maternity floor, huh?" I only said, "Yes." I was in a hurry to get back to the car as my appointment ended up being way late past the time it was scheduled at the gynecologist’s office. With a newborn being cared for by my mom, I knew I needed to get back with feedings and what-not. Besides, I had a million things to get home and take care of before the end of the day. These are all important excuses for keeping to myself, right?

But before I could casually face the front of the elevator signaling that I didn’t have time to talk with the stranger, he began. What he was about to share that morning was exactly what God intended for me to hear. He started with his story:

Oh, I remember those days of being on that floor with my wife giving birth and attending appointments. I am past that now. I was given a 3% chance to live until Christmas. I went in 7 weeks ago for a headache and ended up being rushed into emergency surgery on my brain in Atlanta. They found I had cancer all over my entire body. I am not supposed to be alive still. These are my final days and I just wait.

By now, my tender heart turned towards the man and said, “Well, God is not done with you yet. He is still writing your story.”

He continued, “Yeah, now I go to my appointments and do what I need to do. I never know if today will be my last.”

At that point, the elevator opened and out he flew quickly with a final goodbye. I was left shocked, speechless, and with lots of reflection on the whole incident as I made my way to the car. The attentive girl in me went back to that situation all afternoon over and over in my head. Why didn’t I stop to pray for him? He did have a cross around his neck that I noticed as he left the elevator. But does he know Jesus? Why didn’t I bring it up? Was I so much in a rush, a hurry that I couldn’t even spend more time being a listening ear? Why did the foolish girl in me not think about being more caring as I got on the elevator that day?

I couldn’t stop thinking about this situation and I still haven’t stopped. I wonder if he is alive now or if those were his final moments. I wonder at how he kept his happiness when things seemed so grim other than that he had hope for the things to come. I wonder a lot of things and then it hit me. Maybe that meeting in the elevator was meant more for me than for him. Perhaps, God arranged that meeting to help me grow. He must have meant it for me to realize that I cannot always rush through life. I need to stop and listen to those around me. I need to make it a point to greet others and reach out more to hear their stories.I need to exist in the present time.

Today may be it for us, you and me. We might be in our final days here on earth. We might never live to see tomorrow. We could walk outside and a car could run us over. Or we could pass away in our sleep from a heart attack. We don’t know. God has our days numbered in his book. He knows just how long we have here.

Shouldn’t we be spending it as if it’s our last? Or are we so much in a hurry waiting for tomorrow that we are wishing the day away? Maybe we are waiting for that paycheck to arrive or that vacation to start. Maybe we are waiting for that pregnancy to end or the baby years to get easier. Maybe we are waiting for that day we can take a nap. Whatever it is, stop! We don’t need to wait but to let time exist. Let’s let it exist so we can enjoy the present moments making them our best moments.

The next time we get on an elevator, greet someone passing through the entrance of a store, or exchange eye contact with the person passing us on our walk, let’s take the time to ask them how they are really doing in their life. Let’s stop and listen, even if that means we get back to what we were doing a little late. Let’s pray for that person and with them.

And even more, let’s stop wishing time to pass. It will not be better tomorrow. Whatever we are going through that is difficult or tiring is where we need to be at the moment. Even when our coffee cups run dry and our energy levels are depleted, it’s still good. Even when our heart aches for something or someone, it’s still good. Even when our money is tight, it’s still good. Even when we’ve been hurt by others with their words or we are experiencing real pain, it’s still good. There is no better time than now. Embrace it for what it is and make the most of our current surroundings. It’ll be okay. Just breathe and exist. 

It's All About that NAM

We began the process using the NAM (nasal alveolar molding) today with Jonathan. As we woke up and got ready to drive up to north Atlanta, there was a bit of excitement for him. Knowing that this process would improve his feedings, improve scarring after surgery, and start the beginning of the recovery of his cleft left us a bit anxious to get there. I was also nervous for how it would all go down as any mother would be for their child.

My parents came over to watch the other children at our home. We are so thankful they moved here close to us in Georgia for the purpose of being helping hands and involved grandparents in their lives. My mom snapped a photo of us on our way so we could get one last glimpse of the "before" of how Jonathan looked as God created him when he was formed. And in the car we went with our sweet wonder.

As we arrived at CHOA, we checked in and slumped down into the brightly-colored orange chairs in the big waiting room. The craniofacial clinic also shares the floor with an area for children with spina bifida, cerebral palsy, and epilepsy among other things. We see parents with their young ones waiting, entering, and leaving the room. The waiting room is quite a surreal thing as we all exchange knowing looks, kind smiles, with hearts pouring out for one another. I see a mother talking sweetly to her son of about 9 years old with cerebral palsy. I see two other mothers with cleft babies and a set of concerned grandparents. We all love our children and there is so much pulling of heart strings in the room. I get a bit teary-eyed as I think about how amazing each of these precious gifts are to the world and how even more amazing many of these mothers are for not deserting them.

When I prayed to the Lord last year, I asked him to break my heart for what breaks His. And you know what? He did! It did not break when I had a baby born with a cleft palate and lip. It broke when I thought about all the innocent children who are born and abandoned around the world. There are so many children who didn't ask for this but because they were born this way, mothers and fathers deserted them. Orphanages are filled with them and some of them are older children who have never had any treatment. This is what breaks my heart.

I hear God. I hear Him telling me that this is only the beginning. I've always wanted to adopt someday after having my own. Is this what He is calling me to in the future? When I looked around the internet at cleft lips and palettes before Jonathan was born so I could learn more, I saw many sites with babies and children waiting to be adopted with this very thing. I know it's not possible right now to adopt. But maybe, just maybe it will be someday.

Even so, my heart is broken for those left alone. My heart is broken for those without loving families there to support them as they go through the process of treatment. And I hope that we can all think about it and do something. Even if we can't adopt, we can do something and we should.

Now back to Jonathan's NAM insertion and fitting we will go. We were called back and met with Dr. Granger who will be Jonathan's orthodontist. He will see him all the way through to adulthood insuring Jonathan gets what he needs as treatment for his mouth. He was the one who created the mold for him at the last appointment and he is who we will see on about a weekly basis until his first surgery making necessary adjustments to the NAM.

Dr. Granger showed us the process of the different tapes. One set of tape is cut to the size of a nickel and placed in front of the ears. The other set of tape is wrapped around the rubber bands which holds the NAM in place and keeps it tight. He tested the NAM inside Jonathan. It needed some filing down to fit just right. He left the room to return several times until it fit just right. The part of the tape with the rubber bands slips over it. He calls it "baby headgear" and looks about like that sort of thing too.

Once it has a good fit, we leave it in and are free to go. The NAM, which is sort of like a retainer basically, has to be removed to be cleaned about 4 times a day. The white tape needs to be changed 2-3 times a day. The nickel sized tape comes off about once a week and we leave it off to allow his skin to breathe for about 3 hours. We were warned Jonathan would fuss a lot the next few days. His tongue which is used to going up into the roof of his mouth now has to learn to go forward. But we were also warned that at the end of this process, once we remove it, he will hate it because he will be so used to it.

So far, he cries as he learns to eat from his bottle differently with something new in the way. He has been fussier and fights it a bit. I have been holding him for about 5 hours now and he refuses to allow me to put him down, even to type this blog. But that is okay as I know babies don't keep. I don't mind it one bit. And this is where I will leave you for now. We watch and wait to see how his mouth transforms with this device before he starts the surgeries in the coming months.

(loving on their brother)

(not happy with this thing!)