To My Cleft Baby

Dear Jonathan,

God knew what I needed before I knew you existed. We'd make great companions through this journey called life. He knew I needed you during the tough times of life when I feel like I am failing. He knew I needed you during everyday battles when a smile goes a long way. Because as you know, when you smile at the world, the world smiles back.

God knew I needed your smile. He knew your smile would be a reminder of His love for me. When the days are the hardest, I can look over at you. Your smile is wider and happier than any I've ever seen in this world. He knew it'd be perfect for me.

And it is perfect.

He made you with a bilateral cleft lip and palate. It only occurs in 1 in 700 babies. You are one of those rare wide smileys that brings the perfect uniqueness to this world. Not everyone can be blessed with your smile. Only 1 in 700 babies are chosen by God to be gifted with this marvelous treasure.

And I know I'm not the only one who enjoys it.

When we pass people in public, they remark on the smile you carry around. When your siblings are in the heat of a moment, they see you smile and can't help, but turn happy. When daddy arrives home from a long time at work, you remind him of why it was worth the hard, long day. When life hands me lemons, your smile turns it to lemonade.

I didn't always know it'd be this marvelous.

When I first talked to the doctor after the 20-week ultrasound, I had so many questions. I didn't know what it'd be like or how hard it would make life for you. I didn't know much about it at all. I wondered why God would give this to you. Little did I know, it was for us all to enjoy.

Then you arrived and were placed in my arms.

I looked down at you and instantly felt love in my heart. You were a quiet, calm newborn. You hardly ever fussed at all. The worry of how feedings would go and the care of your cleft were quickly overshadowed by your soft head pressed against me. Instantly, I knew this gift that had been entrusted to me was a precious one. I knew your very being here would change the world.

Soon after, you gave me your first smile.

Not only did you smile with your sweet mouth, but your face also lit up the room. Your eyes smiled with it. And so did my heart. It was just what I needed as I faced a brief season of winter. Life was crazy hard at that time. Yet, your smile helped keep us together. It reminded each of us of God's amazing grace.

Your brothers and sisters fell in love with it too. They marveled over how fun it was to have you in the family. They took turns holding you, reading books, and playing peek-a-boo games. You smiled brightly which showed your interest in them. So they continued to entertain you some more. You have enchanted us all with this beautiful, amazing gift.

And now we head soon into surgery.

I realize your smile will change. Although it's for the best, I know that the way God created you is better. It has changed me in many ways. I look around at the world and notice the things that make us unique even more. It reminds me of the different ways God makes us all according to His image.

I don't want to change it. Now that we have you here, I know that wide smiles are the best kind of smiles. I feel like we are apart of a cool "smiles" club and being a bilateral cleft means the even cooler kind. It's all going to change as they close it all up soon. Your smile will still be amazing. But I will miss the original one you were given.

Now I leave you with this one last thought.

I want to remind you that if you ever look back to read and wonder how you were born, you will know that you were given one of God's exclusive designs. And even after the surgeries you have to repair it, I hope you know that this is part of a purpose He has for you. Find what it is that He is leading you to do in your life and remember He chose you to be apart of the 1 in 700. He chose you to be cleft strong.

Love forever,

Mom

When Life Doesn't Make Sense

Job 6:11 (NLT) But I don't have the strength to endure. I have nothing to live for. (spoken by Job while longing for death to end his misery)

Ever come to a point in your life where you wonder where the punch line is at? The events are part-laughable and part-misery.  Suddenly, there are moments where you cry out wondering if your life story is starting to run parallel to Job? You ask yourself, "Why is all of this suffering necessary? I would just LOVE for things to calm down. Where is my break? This doesn't make sense. How can things turn out so wrong?"

The very things we dream for our life become the uncertain plan. We think our dreams are unquestionably, honest to God going to be the path we will take only to find out it wasn't meant to be. It becomes this mental, wrap-around explosion of confusion. It doesn't make sense and it starts to become a disappointment. For some, health issues change things. For others, relationship issues can do it. Whatever the case may be, it's disappointing, difficult, and deeply distressing at times.

Sometimes dreams become a distant cloud floating away across the sky. Other times, dreams shatter like a piece of glass and cannot be put back together. Dreams of great adventure turn to everyday, monotonous activities. Dreams of exciting ideas don't even get the chance to happen because of change. Dreams of hope feel out of reach and leave you almost breathless. Dreams of pure happiness are broken by some relationship's bad aroma. And dreams of peace are disrupted by annoying anger. 

It happens. It happens to you and me. Our dreams can change in an instant. Or they could be stretched out over time with long periods of uninterrupted U-turns. But we must be prepared for when it comes. 

Job 23:13-14 NIV "But he stands alone, and who can oppose him? He does whatever he pleases. He carries out his decree against me, and many such plans he still has in store." 

Job 42:2 "I know that you can do all things; no purpose of yours can be thwarted."

God has his reasons beyond our understanding for things to happen in our life. He is Sovereign over all of His creation. When we give our life to Christ, we give Him full reigns over us. We say, "Ok, God! I trust you and you alone. Take my hand and lead me where you want me to go." And He wants to do that very thing.

We have to set our dreams aside and turn to what God has planned. In retrospect, Ruth never imagined her first husband would die. If he hadn't, she wouldn't have met Boaz and under that line came Jesus. Jonah's plan to run from God was interrupted when he was cast overboard to be swallowed by a fish. If he didn't take that boat ride, he wouldn't have made it to Nineveh to turn hearts back to God. John Newton, a wealthy slave trader, turned to God after a scare across the waters in which he wrote one of the greatest hymns of all times, Amazing Grace. It wasn't until many years after that time that he actually began to publicly speak up on the horrific environment of slavery. 

The thing to remember is that God uses our sufferings, stories, and change to do something. We may never know the true reason for His plans while on Earth. It doesn't mean it's going to be easy. We aren't always going to accept these plans with grace. Likewise, Jonah didn't want to accept God's plans. He would rather run away on a ship. I imagine Ruth wasn't always sure about the idea of traveling with her mother-in-law to a new land. Remember how bitter Naomi was about everything that had happened. Traveling with a bitter person couldn't have been easy. And even John Newton had to be hesitant on sharing what he really knew about slave trade as he didn't publish his forthright pamphlet on it until years later after coming to Christ. 

But they each had a purpose. The same goes for you and your life. Your dreams may change but the dreams planned for you are greater. God wants the best for you.

One of my favorite songs by the Cranberries has similar lines. When I hum the song in my head, I almost relate it more to my relationship with Christ. Life changes every day and so do my dreams. However, as much as we want our dreams to exist, when we give full reigns to what God has planned for us, we are better for it. 

Listen to the lyrics and try to apply them differently as in reference to God. Feel free to play the video here. This newer version is sung by a different artist:

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!