I needed a place to go today.

I needed a place to go today, not a place to air all my grievances but a place where I could just feel safe to share what is on my heart and on my mind today. Somewhere, someone would understand... So, naturally I turn to the Holy Spirit, who can decipher even my deep signs and groans.

I know I have not written here in a very long time but it has actually been a really difficult year, plagued with many lengthy hospital visits for Cookiepants. She is home, we got home again this past Saturday. We had such high hopes for this last visit, a surgery that in theory would have alleviatedI some of her digestive discomfort. But here we are staring into the face of the same beast that has troubled her since birth, manifesting itself as uncontrollable screaming and punching and being generally inconsolable.

I cry out to the Holy Spirit for His help and His guidance every single day. Whom else should I cry out to but my Father? He is filled with all knowledge and wisdom and is the only one who has what I need. Whether it be comfort or wisdom, He has it. And honestly, I just like spending time with Him. He gets me.

Being a special needs parent has not gotten easier. You just get to a place where you are pushed beyond your, "never will I ever's" and you fix your messy bun, refill your tea mug with the strongest tea you can import and you deal. You stare into the face of all the things you never wanted to do, all of the things no parent ever dreams about doing. In our case, many days have been an especially tailored nightmare. We do our best every single day but some days it just isn't enough.

While we were in the hospital, I prayed and asked God what He wanted me to do. The Holy Spirit whispered, "Sara, you have the ability to bring a bit of heaven with you where ever you go." So I took Him at His word and viewed the hospital as not just somewhere people go to get better (hopefully) but as a Holy Spirit playground. I saw opportunities all over the place to pray for others and lay hands on people in prayer. Back in July when there was the chance that we could have lost Lily, I wasn't going to let her very poor condition stop me from being hopeful for her and for others. I cheered when I saw children going home, knowing my child was going to be there for at least another 10 days. I celebrated the work I saw God doing all over that place. I celebrated when Lily broke through her poor diagnosis and began getting better again. I celebrated when her partial blockage was discovered in her stomach because at least we knew about one more missing piece to the puzzle.

There continues to be so much that we just don't know. This week, in spite of being fed into her intestines, she is still cranky and angry. It would be so easy for me to feel sorry for us and feel defeated but I am just not going to. We have come too far and God has given us too many promises in His Word to neglect even a single one, though things look quite grim today. I don't know what is wrong, I do not know how to fix it but I know that He does.

We are tired. This has been an epic-ally long battle where the fires continue to rage on. I am only one woman but fortunately, I have an entire army standing behind me, because my Father tells me so. No matter how this all shakes out, we will not be defeated, we will not have lost and I will not stop serving my God.

For now, we will hold tight to His promises because they are quite literally all that we have. We have done everything medically that there has been offered to do. Special needs parenting often translates to waiting, a lot. And so we wait. We wait for God to carry out His promises, for the things decreed over our lives to come to fruition, for the prophesies to be made manifest. We await the move of God, because nothing and no one can stop the will of God for our lives, not even the enemy of our souls. God's will is ALWAYS; wholeness, wellness and peace for our body, mind and soul. Nothing less. What I see before me is irrelevant. What God says is what is the truth. That is all I need to know. And that is where I will stay. 

Waiting..........

   

  Waiting... When I think of waiting I picture myself in a line that isn't moving. My legs are getting tired; I'm getting restless, I'm hungry and I'm beginning to lose my patience. I'm ready to turn around and walk out the door and come back another time. But you know what, we wait— all the time in our lives. We're standing still while our lives are passing us by. And you know what else, God called us to a life filled with action, not a life filled with impatient passivity. Watching the days pass by, as we wait for something that we really want.

    For anyone who knows me, you know that I struggle with winter's, a lot. It isn't just the snow or the cold, it wreaks havoc on my body. I'm in a great deal of pain, every single day. It's tempting for me to just muddle through the winter months that pass, holding onto the hope of spring- with no care of the time in between. I've done it before and I've found that I missed out on my life. There was an entire block of time I wasn't actually present in, I wasn't engaged, I was too busy waiting.

   Waiting can keep you busy, even as some part of you is standing still- you're still busy. You're fixated on your chosen focal point and not paying much mind to what is going on around you. The days blur and run one right into the next. You wake up and do things and you go to bed, unfulfilled, waiting for the next day to come because hopefully, it will be better. I think it's easy to get into this frame of mind when you do suffer from chronic pain, whether it be physical or emotional. We're always holding out hope in the mean time.

   I came to the realization that while waiting for the better days to come, I wasn't living my life. I was accomplishing tasks but not living. I was getting the things I needed to get done for the day but not actually living my life. It wasn't fulfilling. It wasn't satisfying. It wasn't godly.

    "Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we boast in the hope of the glory of God. 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' love has been poured out into our hearts through the Holy Spirit, who has been given to us." Romans 5:1-5

    "Do you not know that in a race all the runners run, but only one gets the prize? Run in such a way as to get the prize." 1 Corinthians 9:24

    "Not that I have already obtained all this, or have already arrived at my goal, but I press on to take hold of that for which Christ Jesus took hold of me." Philippians 3:12

    We can't run this race, standing still... Life is a race. The life we have been called to, is a race. There is an element of peace and rest that is always available to us through Christ Jesus our Lord, it can only be accomplished through Him. But the life we are called to isn't accomplished through our indignant complacency. When we're impatiently waiting for "the next best thing" we are essentially saying— I don't care about all this other stuff, I just want to get to the thing I have my eyes on. And that my friends, isn't living.

    God is in the small stuff. He's in the ordinary stuff. He's in the everyday stuff and we'll be remiss to see Him if we're focusing on something far off in the future. I know there are souls out there who feel as though God doesn't speak to them but my question is, are you listening or are you somewhere else?

   Pain sucks, we want to escape it. Uncomfortable situations are miserable. Heart break is awful. Winter (for me) is absolute misery. Dealing with difficult circumstances really begins to wear on you. I get it. I truly do. But as another birthday comes and goes and you look in the mirror and see that you've more wrinkles or see a new gray hair, realize that your life is passing by as you wait. Stop waiting! Your life is right now! It is here, in this place, doing the things you're doing, with the people you're with. Don't go to bed with the to-do list checked off anymore, live through it. Don't merely survive the days, live through them. As difficult as some days may be but be encouraged that the Lord is always with you. He truly is. We can't see Him if we're looking forward to a day somewhere off in the future because He is here now.

    "This is the day the Lord has made; we will rejoice and be glad in it." Psalm 118:24

     Live your life now, stop waiting. Even if this life that you currently have isn't what you wanted, there is always a hope for the future. But to take hold of that future life, we must persevere through the life at hand, and do it with a joy filled heart. God is in today, He is all around us— just look for Him. We can't afford to take up a position of standing still within the recesses of our hearts when we're called to a race. Envision the finish line but enjoy and participate in the race as you travel along, it will be well worth the journey, to one day arrive before the Father and hear- "Well done, good and faithful servant." Oh those words are enough, to know I made my Father proud, living my life in full capacity. He is the only one I want to please, He is the only one whose opinion matters.

    Be blessed today friends.

Super-Mom!!!

     I wouldn't dare name myself super-mom, on a "I really mean it" kind of level but some days, super-mom is what the day requires. I was a mom before Cookiepants came into the world but I was a mom of a typical child. One who met developmental milestones at a typical time. One who was able to eat without struggle. One who responded typically with smiles and began to speak. But it wasn't until 3 years ago that I came to grips with what it meant to become an above and beyond mom, almost like a super-mom.

    They say over the span of the first 2 years of a child's life, a parents lose 6 months worth of sleep. Yeah, you read that right, 6 months. I am convinced, it was more with Cookiepants, in fact I know it was more. For the first several month of her life, my husband and I slept in shifts. We were often awoken by an alarm or a raspy terrified cry. It was difficult to reach a place mentally to shut it down and sleep for the night. I woke up every morning and grabbed the largest can of caffeine I could find in the house just so I could begin to think about functioning.

    Any iota of selfishness has been dashed away... If it rears it's ugly head, something that happens throughout the day with expose it and slaughter it. I used to be a selfish person, who wasn't when it was just them and lived alone etc. It was hard not to be selfish. I didn't share my space with anyone. I had a schedule that wasn't rigorous, a schedule I enjoyed. I lavished myself in sleep whenever I wanted and I ate whatever the heck I wanted. I saw no problem with my selfishness, in fact, I embraced it.

    Selfishness can't be found here. Here you are poured out until you have nothing more to give and then you're asked for more. It's become easier though, I must admit. We're not walking zombies anymore. I've actually been able to eat more hot meals in the last few months that I probably did in the first year or so of Cookiepants' life. And we're working on staying on a good sleep schedule. We're challenged on it from time to time but we fight to get it back.

    Because we have one extraordinary child in the house, we're called to be extraordinary parents and people. Which often means- different. We're different. We're not typical people, at least not anymore, whereas we may have been before. But something changed in a deep and immovable way, deep within us. We can't panic in the face of medical emergencies. Worry as we've discovered causes us to lose even more of the sleep that we're missing out on. We have to be flexible. We can't carve out precise schedules anymore. And arrival times have turned into a "suggested arrival time." We can't make solid plans or it's rather difficult to, at least. -Especially during the long-lasting winter around here. We have to arrive anywhere prepared or know where to buy specific things where we're going. We have to be open-minded. Did I mention a wealth of patience? We have to continually choose patience because if we were people with short fuses, we wouldn't survive a day in this house.

   It isn't madness really, it's just different. It's a different way to view life, it's a different way to approach the day, each day. Caring for a medically sensitive child is so different that I almost felt ill-equipped to care for our son when he was born after Cookiepants. But much like riding a bike, I knew what to do.

    I've discovered through this journey that seeking happiness isn't the aim here, it's developing holiness. Becoming more Christ-like. And maybe this was the thing that needed to happen to me in order for me to become more Christ-like. I have peace now, in knowing this was carefully considered for my life, as a person and as a mother. This wasn't some random occurrence. It was determined. I can see, with my limited human eyes the wealth of benefits that I've reaped from this experience and the effect it's had on me. The positives far outweigh the negatives. Even with all the extra "work" and planning. I wouldn't change this. It wasn't a matter of what I gave up to have this life but what I've gained.

    I've gained an amazing perspective on life itself. How fragile it is and how beautiful it is. How fleeting it is. Death still is, as it has always been, strange to me. I live with someone who by most medical standards, shouldn't be here. She is a miracle. I feel especially blessed to have a tiny miracle living under the same roof as me. This life has shaken me out of my need to plan everything single detail. Cookiepants took care of that. No two days are the same, nor will they ever be. It has trained me to trust in the Lord each moment of the day for everything I need so I can care for/do whatever I need to do that day. I've learned to pray and praise often. There is no such thing as praying or praising too often. In fact, there's always room for improvement here.

    Most of all, I've learned to lean heavily on God each day. I don't have a view of what the day will be ahead. I truly don't. I have a picture in my mind how a typical day looks or how it will go. Picture if you will, driving down a road with dense fog. You have your headlights on, you can see possibly 2 feet in front of your car and that is all. You keep driving because you need to get to your destination. I keep going each day because I have to. God has a view of the entire road. God has a view of your entire life. So you keep driving and nearly blindly trusting even though you can't see whats ahead. God has me on this road for a reason, He can see what I cannot. I will trust Him through the fog. I will trust that He will supply my every need. He will continue to equip me to do the things I have to do.

     Any bit of super-mom that I am, I owe all the praise and glory to my Heavenly Father. A God who has carefully equipped me to be the woman and mother than I am. Everyday I learn something new, this is a process that has a set time, a time which I do not know the end. I will keep trusting in Him who does know.

    When you see a super-mom, pray for her... She's walking in a pair of shoes no one can understand unless you've worn those shoes. This road compares to no other, make no assumptions nor judgments. We're doing the best we can.

 Be blessed friends!