I wrote the post below quite a while ago and spent time on and off tweaking it. When Dare To Hope had their blogging contest I decided to finish this post up and use it for the contest and today it hit me that I'd never actually posted it HERE.
Without further ado, here's a letter I wish I could send to myself seven years ago.
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To say that my life is dramatically different than it was seven years ago is the understatement of the year. If I could get a time machine, go back seven years, and impart some wisdom to my younger self, here is what I would say.
Dear Kate,
Life as you know it is about to change in ways you can't even imagine. That baby you are carrying is a little boy who will turn your entire world upside down. You'll name him Noah which means "rest, comfort." There will come a time when you will wonder why on earth the Lord put that name on your heart, but don't worry - you'll figure it out.
I won't sugar-coat things. The life you will live with Noah will be heartbreaking, terrifying, exhausting, and just plain agonizing. There are few things that hurt as much as seeing our children suffer, and the thought of losing him one day will often be more than you can bear.
Having said that, eventually you will come to see the impossible: that the scales are tipped far more heavily toward joy than toward sorrow. There is more love than loss, more hope than horror, and the beauty of this life will take your breath away at times.
You've often told Jeff that if you ever even thought you would lose a child you would turn into dust and blow away . . . but one day you will sit exhausted in the hospital praying for Noah and you will realize that against your wishes you have been forced to face your greatest fears. You will find to your amazement you are surviving. You won't turn to dust and you won't blow away.
You will learn to do things you never wanted to do. More than once you will cry all of the way home from the hospital because you are sure that you will mess up and harm this fragile little son of yours, but I promise you will learn to give him the best care possible. Before you know it you will be adept at reading labs, checking vitals, mixing and administering IV meds, managing drains, caring for a central line, and more.
I know that all of that must sound overwhelming right now, but the funny thing is that the hours you spent taking care of Noah's medical needs will just become second nature. When you look at him you won't see lines and drains and scars and pumps. You will see a treasure beyond compare who just happens to be incredibly funny and loving and who is crazy about octopuses, dragons, Legos, and Angry Birds. He is a complex patient to most people but to you he's just your little boy. Even though he has a hole in his heart, gut organ abnormalities, and a bit of broken DNA called mitochondrial disease, it will be pretty obvious to you every part of his spirit and soul was put together just right.
The pain he feels will shatter you at times and you will rage against God and the world and the unfairness of it all, but one day you will realize that the struggles you've railed against as unjust have made him who he is - a boy that you adore with every cell of your being and who adores you back just as much. You'll be terrified that his suffering will shatter him the way it shatters you, but somehow, miraculously, it won't. You will be humbled by the grace, love, generosity, and wisdom of this tiny child. Just wait until you see how much you will learn about living from your own small son.
The pain of this journey will also shape your other children. Their lives will be far from conventional, but they will learn to see God's hand and to trust His love for them. They will become children who are filled with compassion, stay calm in a crisis, and are never afraid of people who are "different." You can rest assured that because they will each choose to allow God to work through them, their trials will refine them and prepare them for God's calling instead of breaking them.
You will meet the most amazing people. Some of the doctors and nurses who care for Noah will become like family to you. Other moms who are dealing with similar struggles will become some of your most cherished friends. You will get to know people who are brilliant and compassionate and selfless, but your won't meet most of them in person.
To your amazement you will realize that Noah and his story will touch countless lives around the world. One night not too long from now you will sit in your room holding your phone and crying. It will seem that every day you need to call multiple relatives to update them on the latest news about Noah, and since the news is never good, all of those phone calls will be more than you can bear. In desperation you decide to write one single update a day on a blog so that friends and family can get the news without your having to repeat it over and over. You only did this to spare yourself but one day you will realize you've got thousands of readers and millions of hits. You never will know exactly how or why this happened except to imagine perhaps it was an answer to your prayers that God would be glorified through this journey.
You will almost never cry during the worst of the really bad stuff. People will think it is because you are so strong, but they are wrong. It's because you'll be afraid that if you start crying, you may never ever stop. On the other hand, sometimes the tiniest things - a spilled cup of water, an unkind word, or or a small disappointment - will make you cry almost inconsolably. The best you can figure is that you can cry at something small or cry after the crisis because it's safe to cry then. Even though you will learn a lot about crying, somehow you will never forget how to laugh.
You will never again say that God only gives us as much as you can handle. Trust me - He is going to give all of you WAY more than you can handle, then He will work through your weakness. You will reach the point where you never have to wonder if the Lord is mighty enough to save because you will know He is! He will never fail to be enough in the darkest nights, the most terrifying moments, and the times when you'll think that despair will overcome you. You'll be a bit of a slow learner, but I promise you'll reach the point where you'll no longer wonder if He will continue to be enough for the hard times to come. People will assume that this, too, is because you are strong, but in reality you have only the strength of a dying man reaching for a life raft. You won't let go of your faith because you can't - you know that without it you'd never survive.
Sometimes people will tell you that they are impressed that you seem to stay so calm. You'll know the truth - that first of all you're often too tired to be anything BUT calm, and second of all that you've learned a lot of valuable lessons in perspective. When you come across blood and commotion by Noah's bedside but your older children tell you not to worry because "it's just because Sarah snipped off the end of her finger," you will catch a glimpse of just how much you have all changed. When you realize that you were actually relieved that it was "just" the tip of a finger, you will wonder if maybe you've learned to be TOO calm!
You will be the recipient of many kindnesses large and small. When someone says, "Let me know if I can do anything," you won't know how to answer, but you'll be overcome with gratitude when someone takes action by putting gas in your car, bringing a meal, taking the other children for an outing or bringing them a treat, slipping you a gift card, coming over to tackle a household project, or taking the time just to sit and talk.
You will spend literally thousands of hours in the hospital rocking Noah as he's draped over your pregnant belly with his head on your shoulder. (Sorry for the spoiler, but you're going to have another little girl eventually. You will name her Mary Faith and she will be an unspeakable delight to the entire family!). As you sit there willing his fever to go down or his eyes to open, you will wonder why on earth you ever got irritated at one of your other little ones for unrolling the toilet paper, coloring on the wall, or making some massive mess. Because you now realize you'd give anything to have Noah doing those things instead of lying limp in your arms, you will become more gentle and patient with all of your children. It's a brutal way to learn perspective but it will make you a better mother.
In the same way, as you stand crying at a hospital window watching Jeff and the children walking through the parking lot to get in the car and drive home without you, you'll wonder why you ever said, "no" to an extra story, batch of cookies, or trip to the park. You'll vow to be grateful for Every. Single. Second. you get with your children and you will start living in the moment like never before. You will receive the gift of seeing little miracles every day - miracles of the ordinary that you never even noticed before. The sight of a sleeping toddler, the sound of one of your children laughing, the presentation of a childish hand drawn picture, and the exhaustion of staying up too late with goofy teenagers will become priceless opportunities to be treasured.
You will always find joy, even if you have to look hard. Sometimes you will have to make the deliberate decision to choose joy despite all of the conflicting emotions swirling in your heart. Other times it will come upon you suddenly with a brilliance that is as unexpected as it is blinding. I know there will be days when it seems like to much work to choose to walk in joy, but it is worth it. When you learn that he will never eat again, it is better to celebrate his ability to drink sips of juice than it is to regret not making his favorite meal one last time. When you learn that he will never walk again, you will choose to focus on what he can do and you will celebrate when he learns to zoom around in his power chair or scoot out of bed on little wooden steps so he can play on the floor. Choices like this may seem hard at times but most days you will be so proud of him and so delighted by him that you won't even think about his limitations.
You will be amazed at Noah's capacity for love. If he had a superpower, it would be the ability to shoot some sort of laser-love-beams at everyone he meets. Every time he chokes back tears to thank a doctor for performing a painful and scary procedure, or tells a nurse he loves her after she spends an hour trying to start an I.V., or gets up in front of church to tell everyone that he knows that God is good, or tells you that you are "the best of his heart," you will wonder why God ever chose YOU to be so incredibly blessed.
Hold on to that last thought - to the knowledge of how greatly you've been blessed. Never lose sight of the goodness of God, even when you can only see it with the eyes of faith. Invest in each one of your children, in your marriage, and in service to the Lord even when you feel too tired to put one foot in front of the other. In God's economy, you will be filled by pouring yourself out. Never regret the hours you spend just watching Noah sleep instead of "getting something done." Hold him and rock him every chance you can. Cheer him on and be as strong as you can for him, but remember in the end that his greatest peace and joy will come from the Lord just like yours does. Know that not one of your tears or his will go uncounted by your Father in heaven, and not one of them will go to waste.
Blessings,
Kate
