The slow unraveling of faith...

The slow unraveling of faith…

            I am going to press a spiritual hot button because I think it needs to be done and because I’ve been there. Read on if you’ve got the stomach and heart for it.

            “In this world you will have trouble. But take heart! I have overcome the world.” John 16:33

           

        This is what Jesus has told us of this life we live… It sounds to be a bit of an understatement when you pan over the struggles of your life, doesn’t it?  On Earth; in our lifetime, maybe on a daily basis, we experience; loss, sorrow, pain, frustration, hunger, anger, fear, confusion, brutal attack…. The list could go on forever. And I can only speak on behalf of myself here.

           

         Let me set this up by saying that today, when you woke up, you awoke amidst a world- wide battle.( I'm not talking about the horror you see and hear on the news)  The moment you were conceived in your mother’s womb, you entered into enemy territory. Now I know you didn’t ask to be born. None of us did but now that we have options we can make the best decisions possible to thrive and survive. You can choose to either be tossed about by every wave of difficulty or you can be aware of it and fight back!  

           

          You may be reading this thinking I’m crazy but quite frankly, I don’t care if you think I’m nuts… I know that this, is the truth. There is more going on around you than you’re aware of. There is more going on around you than you can see. 

          

         “Put on the full armor of God, so that you can stand against the devil’s schemes. For our struggle isn’t against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms.” Ephesians 6:11-12

            This is a serious warning. Read it again…

When something is bad you warn your family and friends, right? Or if you go to a restaurant and every time you go, you get food poisoning? You would warn those you love, wouldn’t you? Or if someone you knew was going to buy something that was a piece of junk. Or do something that would bring harm to them? You would have the heart to tell them, wouldn’t you? I hope you get my point… I’m not trying to be all doom’s day here. I’m not trying to scare you. But I want to re-direct you back to this warning in the bible.

          

          Jesus warns that we will have trouble in this world. There seems to be no way to avoid it. Things are going to happen, it’s inevitable. But… We can turn to Him in our time of need because He already has overcome the world. What does “overcoming the world mean?”

How many people do you know that died and rose back to life three days later? How many people do you know raised others back to life? How many people do you know that made the blind see again or the paralyzed and crippled walk again?  If we are on enemy lands, and Jesus who once walked this earth, repeatedly healed and made whole the sick and even the dead- in enemy territory, who won the battle? Who won the overall battle?  

“And having disarmed the powers and authorities, he made a public spectacle of them, triumphing over them by the cross.” Colossians 2:15

He accomplished the one thing none of us were capable of doing. Triumphing over the evil forces of this world. The battle has been won. The devil has been defeated. Jesus died for you and for me!

But why don’t we see a victory? Why are all these things still so far from perfect? From peaceful? Far from love? We are still in enemy territory. We’ll get our plane ticket out of here when Jesus returns or when you reach your final destination, hopefully it will be the destination with Christ in heaven.

Two scriptures I read in James I think are best suited for this entry today.

“Religion that God our Father accepts as pure and faultless is this; to look after orphans and widows in their distress and to keep oneself from being polluted by the world.” James 1:27 (emphasis mine)

“Submit yourselves, then, to God. Resist the devil and he will flee from you. Come near to God and he will come near to you.” James 4:7-8

I felt led to both of these scriptures to share here because they are a key, I believe. If we are in enemy territory, our earth and we allow ourselves to get so wrapped up in the things around us it does become a poison to us. Also, when tempted to turn to worldly things, we are encouraged to resist them and turn toward God.

I’ve wanted to cave in. I can’t tell you how many times over the last year, especially, that I have wanted to throw in the towel and just check out. I’m not talking about suicide. But if you’ve gone through recovery of any kind, you know what I’m talking about here. It has been tempting to just neglect responsibilities; be wreck less, have a break down or ten, not get out of bed, or give into whatever the devil is pushing you towards. But there has always been a very quiet voice, a gentle push back into the right direction. Encouragement in my spirit that re-directs me back to where I need to be. That re-direction…? Hit the floor. Get down on my knees and pray. That’s always been a good place for me to start when my flesh is feeling anxious and I can’t take the weight of it all anymore. Jesus often went off to secluded places to pray to the Father all the time. He stayed connected to the source. Why do you think we get so distracted? How connected to the source are we?

“Very early in the morning, while it was still dark, Jesus got up, left the house and went off to a solitary place, where he prayed.” Mark 1:35

Jesus has been the only one in history to have been victorious when He walked this earth. He is the only one who figured out and did navigate His way through this life, the right way. That is the man I want to follow. Those are the footsteps I want to walk in. I know I am greatly opposed because I am in this world. By faith I will walk behind Him because there is no one else who died and three days later arose from the dead and was able to share His story, no one.

A bit more hope and peace of mind:

“Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.” Galatians 6:9

I pray that this entry has served to reignite that fire for recognizing and standing against the dark forces of this world and reminded you to turn back to the only one who knows how to fight against it, our savior, Jesus.

The pursuit of playdom

                                                            The pursuit of playdom.

                I remember when I was a little girl, playing was incorporated into everything that I did, naturally. As a child that was naturally where my thoughts went- how I could play with this and that of my surroundings. Remember how easy it was to play and quickly get whisked off into a different world comprised of make believe and wonder? In my early twenties, I think I still knew how to play. They were just more adult games, like darts or pool or poker. I still knew how to kick back and relax back then too.

                Now that I’m in my early 30’s, when I wake up in the morning, my mind is flooded with the tasks that need to be carried out for the day. All of the needs of others that need to be fulfilled. There are some days that when my head hits the pillow at night, that even though everything got done that day, I still feel as though nothing got done. I’ve begun to think it’s because there was no play time. There was no fun involved. Maybe a few moments on the phone, playing some time waster game- just to take the edge off the day, momentarily. Other than that, where did all the fun go?

                

          There is a pulse to our nation that can be heard in nearly every commercial; media outlet, schools and just about anywhere else. Strive. Succeed. Don’t stop. Keep pushing. Keep planning. Keep working. Don’t rest. This is where all the play has gone. The idea has been knocked off the drawing board of the adult life and replaced with endless striving. There is a book in the Bible that speaks about all the things of life, Ecclesiastes. The first time I read it, I thought it was really depressing. But then the next time I read it, I felt the Lord open my eyes to the real point behind it all. That life is meaningless without God.

               

          God is the author of all things, whether it is work or it is play. You can see the nature of our Creator in all things. Although we are the only ones made in His image.

                “I have seen all the things that are done under the sun; all of them are meaningless, a chasing after the wind.” Ecc 1:14

“Naked a man comes from his mother’s womb, and as he comes, so he departs. He takes nothing from his labor that he can carry in his hand.” Ecc 5:15

I am not suggesting lazy-ness either, I am suggesting not so much busyness. Busyness keeps our sight off of what is most important; God and our families. Growing in love and in relationship with both. Having fun together. Playing. Living rather than just surviving and striving.

We can’t achieve our way into approval from God. There are days where we are going to fall miserably short of God’s glory, that is every day but that is what we have Jesus Christ for. We will all stand before the judgment seat of God, whether you believe that or not. I will not stand there and explain away all the things that I did in this life and all the things that I had. All the money I had in the bank, all the awards I won and how respected or feared I may have been. I want to stand there and tell Him that I loved my family with every ounce of love He filled my heart with. And on the days I felt myself slipping, I turned to His Son for my strength to go on. That is what I hope to take with me when I depart.

If you sit and look out your window on a fall or spring day and watch the squirrels you will see a wonderful example of work and play. Squirrels are usually hard at work; collecting, gathering, building. But in the midst of it all, they play. You see them chasing one another up and down trees, from limb to limb. Or what about dogs? Who do you think it is that gave your dog a mind to play fetch? Or what causes the birds to rejoice after a warm spring rain? I can see outside my window, even though it is bitter cold, squirrels playing. And when the wind picks up, I can see them cuddling together for warmth in their tree top nests.

               

  Some would argue that animals are almost “programmed” to be this way or that it’s just their nature. That may be true but maybe they are the smarter ones for not replacing the original program. Do you think we were always supposed to strive unto death? Until we are thread bare and white knuckled? Why do you suppose more and more people need sleeping pills just to sleep? Or depression medication? There is something going on here that we are all ignoring- this life we are leading, the one we are pushed to lead due to our environments and our newly programmed mindsets, is taking away from what matters most. The thing that gives us peace. God. Family. And some good old fashioned fun.

                “By the seventh day God had finished the work he had been doing; so on the seventh day he rested from all his work. And God blessed the seventh day and made it holy, because on it he rested from all the work of creating that he had done.” Genesis 2:2-3.

I don’t think God rested because He was tired… He rested because He knows how important resting is. It’s an example and outline set forth for us to follow. We need to rest too. We also need to play. It is in our nature, remember, you played as a child. You ARE still the person you were as a child, you’re just older now and your playdom has been stolen by all of your tasks and endless striving. Find that person again. He or she is still in there. Don’t think about how silly you will look, playing. Just go where your heart leads you. Play in a way that of course wouldn’t be harmful to others or displeasing to God. Or if that’s too big of a step, then just be still…

Good luck finding your way back to playdom, your inner child will be there waiting for you…  

Where I end and where you begin...

                                                Where I end and where you begin

            Marriage… For some that’s almost a loaded word. Unfortunately, marriages have been left open for a lack of respect; infidelity, abuse, or just not realizing and respecting the magnitude with which marriage is to be taken seriously. I can fully understand why the word marriage would be a hit below the belt for some.

           

        Marriage can truly be a beautiful thing. It can be an amazing thing. But no one ever said it was going to be easy. Even Paul warned: “But those who marry will face many troubles in this life, and I want to spare you this.”(1 Corinthians 7:28)  Stern warning, right? Absolutely, even more so if you don’t intend on doing marriage God’s way. Read all of 1 Corinthians 7:28-34. Which leads us to 1 Corinthians 7:35, this is where I want to go with this. “I am saying this for your own good, not to restrict you, but that you live in a right way in undivided devotion to the Lord.”

            

        I will write from the view point of a woman, as it is easiest for me. Ha… Let me set this all up by saying I am not a model citizen (you chuckled if you know me). Our marriage is not perfect but I do believe that my husband and I have something of a rare quality. We recognize that we (ourselves) are not number one. First and foremost, is God, secondly, each other. This is the relationship we are called to pour ourselves into. This is the earthly relationship that is to be sacred. There is no man other than my husband. Nor is that concept even a possibility. There are too many options couples unfortunately leave on the table when entering into a marriage. The possibility of leaving or divorce. The twisted ideology that a man is to rule over a woman (in a brute, harmful way). The idea of living completely separate lives. A marriage of convenience. None of this is marriage. Not as it was intended at least. There is a mutual dance that was set afire when God created marriage. It was meant to be beautiful; deep, personal and lifelong.

           

          I have grown very passionate about the subject matter of marriage. It means something completely different to me than it had. I once had a worldly view of marriage too. I am grateful that the Lord opened my eyes to the truth.

            

         Alright, let’s crack open an often twisted and misunderstood scripture about marriage and a wife’s role. I think I’m ready for this…

            “Wives, submit to your husbands as to the Lord. For the husband is the head of the wife as Christ is the head of the church, his body, of which he is the Savior. Now as the church submits to Christ, so also wives should submit to their husbands in everything.”

Let’s read on: “Husbands, love your wives, just as Christ loved the church and gave himself up for her to make her holy, cleansing her by the washing with water through the word, and to present her to himself as a radiant church, without stain or wrinkle or any other blemish, but holy and blameless. In this same way, husbands ought to love their wives as their own bodies. He who loves his wife loves himself.” Ephesians 5:22-28 (emphasis mine)

            Alright, let’s look at this in context. This is not sexist, as some may think. I have no problem “submitting” to my husband because he regards me as a part of himself. And-because he follows the Lord’s leading in his life, his intentions aren’t impure nor displeasing. My husband isn’t reckless with our life. Once we said our wedding vows, my life and his life were merged, we became one- just as we are called to in the bible. That a man would leave his parents and join with his wife to become one. We are also called to take care of our bodies because they are God’s temple. (1 cor 3:16, 6:19) Therefore, if we are treating each other as we should and treating our bodies as we should where is the fear coming from? Here is another scripture to set things into place too. “Do nothing out of selfish ambition or vain conceit, but in humility consider others better than yourselves. Each of you should look not only to your own interests, but also to the interest of others.” Philippians 2:3-4

            Some women would contend that they would have no power or say over anything in their life. I know I used to think that way until I understood the scriptures right. What do you want the power to do anyhow? Ask yourself that if you’re struggling with these scriptures. The only thing you truly have control over is your attitude. If the plans you make for your life as a married couple aren’t a part of God’s plan or will, those plans will be thwarted. “In his heart a man plans his course, but the Lord determines his steps.” Proverbs 16:9

            A husband has a tall order and a wife has no small feat either. In this world our natural inclination is to just take care of ourselves and look out for our own interests. It’s like a default setting. A man must love his wife like Christ loved the church (all the people, not the building) Christ died for all His people, the church. That was the ultimate sacrifice. Husbands are being called to love their wives with the same kind of intense resolve. The kind of – I will stop at nothing and do whatever it takes to love my wife. A wife that is dearly loved, adored and cherished is a beautiful thing. That is a means for motivation as well. It motivates a woman to hold up her end of her responsibilities in a marriage.

            Wives are also called to respect their husbands and submit to them. Respect your man for what he does for you. Respect your husband for going to work each day. Respect your husband for all of the little things he does that either you are incapable of doing or just don’t like to do, you know, the manly type stuff. There isn’t much else in this world that makes a man feel like a man when it is evident that he is respected by his wife. Now that, is something to go home to each night! Also, trust in the Lord that the direction your husband wants to take for your home has been well thought out and taken to the Lord in prayer. Both of you should take it to the Lord in prayer. With that as a baseline, both what husband and wife are supposed to be doing, what they are supposed to be to each other and how they are to act- that’s a pretty good start. 

          All too often we take each other for granted, as though they are always going to be there. Now we are called to always be there but that doesn’t mean you should take a person for granted. Love is the staying power. Jesus replied: “Love the Lord your God with all your heart and with all your soul and with all you mind. This is the first and greatest commandment. And the second is like it; love your neighbor as yourself.” Matthew 22:37-39

How much more do you suppose we are called to love our spouse if we are asked to also love our neighbor as ourselves? Loving God and doing what is pleasing in His eyes is number one. There is NOTHING that escapes His view. That in itself is a good remedy to keep a clear conscience. We get our love for one another from God. It is because He loved us first that we are capable of loving one another. This is why it is important to maintain an open, devoted and loving relationship with our Father.

            If each of us is doing what we’re supposed to be doing in a marriage we should be good, right? As in, everything is hunky dorey, right? Heck no… not in this world. It’s hard work. But the best work you will ever do! It is a masterpiece worth fighting for. I think that was one of the supporting factors to Paul’s warning. Here is a major factor in why, “A cord of three strands is not quickly broken” (Ecclesiastes 4:12). “For where two or three come together in my name, there I am with them” (Matthew 18:20). The reason why I led us here is because this is where the trouble comes in. These scriptures in regard to marriage are fighting words for the evil one. These two scriptures are the definition of unity, oneness, closeness. Our enemy doesn’t want anything of the sort for us. If it were solely up to him, married couples would just be feuding all the time. Here’s a couple scriptures to get a good idea of his nature.

 I know I’m jumping around a little bit but stay with me, this is so rich… “Be self-controlled and alert. Your enemy the devil prowls around like a roaring lion looking for someone to devour. Resist him…..” 1 Peter 5:8-9

“The thief comes only to steal and kill and destroy.” John 10:10

            

        What can we gather from all of this? First of all, the devil is real. He’s not the red guy with horns and a pitch fork but he is indeed real, the scriptures say so. (Isaiah 14) Second, the greatest lie the devil ever told was that he isn’t real. (some variation of that was in the usual suspects, origin unknown otherwise) So, if there is no enemy to defeat or stand guard against, what threat is there on your life; marriage, or even the well-being of your children? That’s a pretty twisted and cunning lie then, isn’t it? But, if you know the truth you have more than a fighting chance. Without it, you will fall into the worldly thrum of life.

            

       We have to be careful not to fall into the devil’s traps and fall for his disguises. He is the master of deception. It is what he has prided himself upon. The world is filled with temptation. If you seek God and seek godly council you will know the difference between what is pleasing to God and what isn’t. There is a very thick line between right and wrong here.  Keeping God at the center, living right and honoring your marriage vows you will have more hope than most. Not letting go of that first and foremost strand, this is a huge key to it all. Praying together for your lives; marriage and family, the Lord will be present. Recognizing the devil’s ploys to get you both fighting against each other rather than standing in arms together. A marriage united is power! That is one of the reasons why it was meant to be so sacred. Unfortunately, it has been made cheap and disposable by the world. It has been taken too lightly and it has been abused and damaged. I know all too personally, I fell into that worldly trap myself when I was in my mid-twenties. I made my amends to God for my ignorance and disregard for what He had intended. I am very blessed that I was allowed a second chance and have been blessed with a wonderful husband now and a marriage we both take to heart and both fight for.  

             

            In conclusion, if within our marriage, we come to God together- a cord of 3 strands is not easily broken. Your marriage will be stronger with God as the center point. He has the power to change, heal and restore. He has the power to keep you on track in your marriage and keep your intentions pure. Your marriage is greatly opposed by the enemy because it holds a power he doesn’t have. Even with all of your struggles and trials, if at the end of the day both of you can take a quiet few moments and pray together, the Lord will be there with you. And that, is quite the threat to our enemy. Because as you know, the overall battle is won but the daily battles still rage on. One way to knock down those daily battles is to stay united. Stay on the right side of the fence. Know your roll in your marriage, know your boundaries. Your marriage isn’t a place to push on boundary lines. Your marriage is the most important asset you have, next to your relationship with God.  Take the scriptures for what they are, in proper context. Marriage isn’t about power. It’s about unity if you’re living it right together. It is two minds working as one. Two bodies being one. What more a beautiful thing can there be? Go back and read the first pages in genesis about Adam and Eve. Marriage should make more sense. If you’re approaching marriage with the right mind set, there should be no sense of where your husband ends and where you begin.

           

The idyllic winter- a sound off.

                                                            The idyllic winter

Let me set this one up by saying, this is a rather serious topic matter to me and yet also funny as well.

The ideal winter for me is no winter at all. I am commonly referred to as Mama bear around the house and my husband, Papa bear. We are bears in a more literal sense than just a cute pet name. Once the outdoor thermostat gets set for below 45 degrees I just want to take a big fat nap……. Until spring.

            I am the classic- let’s open the windows, open the curtains, go to the beach and get some color, ooooh ice cream, salad eating, bikini wearing, the less clothing the better, why isn’t the fan on!?- person.

            

         Have you ever been stuck somewhere by your own doing? Yeah that’s me… I made some life decisions that have kept me here all these years even though the weather here torments me to the inner most corners of my soul. I am a slug when it comes to getting up and getting ready to head outdoors early in the morning to go somewhere. Between 3-4 layers of clothing just isn’t quite enough. Letting the car warm up so the ice will melt off rather than wasting precious energy on scraping it. It is my goal once again this year to get an automatic start for the old green tank that I drive, in fact, just had the discussion again with my husband yesterday. It will at least eliminate some of the torment. Anything to make surviving winter easier, I say…

           

        In regard to winter, there are many scriptures that come to mind. One that seems to relate to me personally the most is that Jesus came to give us life, life to the full. (John 10:10, paraphrased) Now there are many days where I turn to the Lord to give me the strength to get through a winter day. It is bleak and dismal outside, the sky is grey and it is frigid out there. What reason would a person like me have to want to do anything other than stay in bed all day? I have kids, right? They need me. I have a husband, he needs me. I have a house to care for. So where does my strength come from? Jesus. The first part of that scripture that I didn’t quote- “The thief comes only to steal and kill and destroy…” John 10:10 NIV. If I allowed it, winter is like a thief in my life. It does in fact suck the life right out of me. Thief, being the devil. If I allowed myself to get carried away with my feelings, giving into depression, pessimism, crabbiness, etc, who then would I be benefiting? Better question yet, who then would I be serving? The thief.

            

           I will say, winter causes our household to stay closer together. We watch movies together, stay in jammies all day, communicate how we are feeling more because we all understand how the cold weather grieves us so. I also know it causes us to look to the Lord for strength for daily tasks as well. Where there is no motivation, there is no energy.

           

        I had debated ripping into the subject of all the sicknesses going around this time of year too but I would imagine my opinions would be miserably offensive on this subject matter. I guess given the person I am, I have learned over the years to better prioritize what is more important. I do at least have a few words, sending your children off to school with snot running down their sweet little faces, with no hats or gloves or snow pants, not cool… Or just sending them to school sick, period… Hasn’t anyone figured out that’s how this garbage continues to get recycled unto every child? And some parents might bock at my words but I see you too- I see parents not wearing gloves, or scarves or hats and just wearing a light coat. What kind of example is that?

           

        I also do know that there are some unkindly bosses out there who don’t understand that you may need to stay home here and there to take care of your family- which is indeed priority number one. Come on man… where have people’s hearts gone!? I’m pretty passionate about this stuff you see. Every time my oldest daughter gets sick, her little heart is grieved, much like mine is during the entire winter. She can’t run and laugh and play because she is now sick. And with her little sister in the house who has a questionable immune system, she has to stay away from her. Do you see the chain of events that unfold? How often do we consider the needs and work load of others?  

           

        I could certainly write pages upon pages on subject matter regarding the health of children and a parent’s responsibility for it. There is some inevitability to it all though. We are locked indoors with all the windows closed with dry air.

           

       Oh but how much sweeter is spring when it does come? God faithfully folds back the blankets of snow and begins to call forth the lush greenery that is eager and rested from a winters nap. And how lively the trees begin to look, with their green beginning to fill in all the space in between. We can’t forget the birds that sing a sweet song every day, rejoicing over the warm weather and the plethora of food available. When it is warm outside everything rejoices. Every living creature has a song of its own in praise to God. Including in our household.

            

The truth

                                                                        The truth

            Allow me to preface this blog entry, this is in no way a log of complaints nor a plea for sympathy. Today, it is merely an insight into what life is like with Lily, as accurate of an insight as possible without actually inviting perfect strangers into our home.

            Today, Lily is celebrating 11 months of life! That is quite the achievement considering we weren’t sure she was ever going to make it out of the hospital 11 months ago. Today Lily is not quite sitting on her own and she eats small amounts of yogurt and applesauce being spoon fed. Today Lily has two teeth, one on the top and one on the bottom. She has at least two more that are about to poke through. Amazingly, keeping in stride with the way she has been, she is taking it rather well. A bit more cranky than usual but no more than we have already dealt with.

Over the course of the last 11 months, beginning at about three weeks of life Lily had in home weekly nurse visits for several months. She has seen her regular doctor at least 10 times. Lily has seen “specialty” doctors about 15 times, ranging from; genetics, cardiology, ENT, a swallow specialist, GI, orthopedics and oxygen specialists. She has had by my estimation, 16 occupational therapy appointments, 10 physical therapy appointments, a handful of visits with the birth-3 program coordinators and staff. Lily has also seen chiropractors a handful of times as well.

Also over the course of the last 11 months, we have tried 13 different formulas, including goats milk. Lily suffers from extreme acid reflux which landed her in the hospital in September of 2014. She choked so hard that it broke most of the blood vessels in her adorable little face. My husband and I have tried various “cures” for the acid reflux, including, Omeprazole and ranitidine. Neither of which worked. We have tried coconut oil, chamomile tea, ginger root, aloe vera and gripe water. Finally we got sick and tired of Lily being treated like a case rather than a person and went alternative/natropathic. As it turns out, Lily’s reflux is a direct result of not producing enough stomach acid and needing to be on a pancreatic enzyme. It is due to her blood type. Honestly, looking back, we should have just gone this route in the first place… But given the special case that Lily is, I think we allowed her special needs and many unknown factors to determine our decision more than we should have. Since Lily has been on the enzyme, her reflux has been greatly reduced. Not gone but not as uncomfortable and I believe much more tolerable for her.

 A few days after birth Lily was put on oxygen, she finally decided it was time to retire the tubes in August of 2014. She had ear tube surgery earlier in the month of August as well. Lily was on oxygen for almost the first 6 months of her life. Everywhere she went she had tubes with her. At night she was hooked up to a pulse ox meter. She regularly had a rash on her foot from where the tape had been. The first two months of her life she was hooked up to the pulse ox 24 hours a day. The rash was much worse then, even with changing the location on her foot multiple times a day. She also had tape on her face, either on her nose to hold the tube in place or on her temples. We had to change up where we taped her on her face also because of skin irritation. Lily didn’t seem bothered by her tubes until the last month and a half or so. Her oxygen saturation levels were beginning to stay pretty consistent during the day when off oxygen. She was beginning to test her new limits as to what her little body could do. We eventually were able to keep her off the oxygen all day long with no problems what so ever. At night she would go back on and her saturation level would stay in the normal range. After about a month of only oxygen at night, Lily began pulling the oxygen out while sleeping. The alarms would never go off on her meter because she stayed within the normal range. It was as though she was telling us that it was time to come off.

We continued to keep the pulse ox on her at night with no oxygen just to be assured that this was really going to work. It sure has. It has been 5 months without oxygen and Lily has been doing great without it. A HUGE praise to God, the oxygen thing, while in the midst of it, seemed to be something that we were never going to make it out of. I can’t even begin to describe the odd looks we got from people when we would actually go places. Woman would approach the infant seat, not seeing the tank or the tubes with delight, then once seeing our little bundle their face would turn sour and ask what was wrong. We both became so well rehearsed in our response, we had been asked too many times to count. “Well, when she was born her lungs were under-developed, so she needs a little extra oxygen until her body catches up.” The response came automatically. It was usually followed by a nod, pushing out a smile and the person quietly walking away. At first it hurt my feelings and made me not want to go anywhere with her. I didn’t want anyone to just sit there and stare or ask questions. I didn’t want to have to explain away the huge truth of our life. God healed Lily in His perfect timing. It may have taken longer than we had hoped but no less, He healed her.

As time has ticked along there have been some strong character traits that have come forth in Lily’s little personality. We weren’t certain if they were a trisomy thing (see blog about trisomy 9) or if it was something else. So, one night I googled: why is my baby so crabby all the time. I found an article by a Dr. Sears. If you’re curious, google it for yourself. 12 features of a high needs baby. I read through the article, then skimmed through it again because I was in utter disbelief. This was our little baby. This was Lily to a T. While the article didn’t necessarily give solutions to caring for a high needs baby, it lead me to other blogs and resources and it also filled my husband and I will some relief that there was an explanation to what it was we were dealing with. I personally can’t offer any solutions either. In this 5-step to a solution sort of world that we live in, there is no easy fix of solution to coping with a high needs baby. And as difficult and as painful as this has been, in combination with all of Lily’s other special needs, we still have hope. We have faith that every day that we have Lily, God will provide just as He has for the last 11 months. God has provided resources. God has provided money. God has provided relief. Moreover, God has provided hope. There are days when we feel like we have no hope. I won’t lie. There are days where we are utterly exhausted and worn down to the nub because her reflux has been so bad and she is refusing to sleep again and wants to eat around the clock. Yes, this does happen.

It’s the middle of the night again. She’s been screaming with no hope of consolation (we’ve tried everything at this point) It’s 3 am and I’ve managed to get 15 minutes of sleep. This may be all I get until she finally decides to throw in the towel at 10 am. Yes there have been nights like this. This is the truth. These are the things most people don’t know anything about. Her reflux is out of control. She hasn’t pooped in 3 days. She getting a tooth. She was around someone who had a cold. We can’t lay her down. She doesn’t want to drink her bottle. She doesn’t want to be held. The Dave Matthews dvd isn’t even coming to the rescue this time. Nothing is working. She’s in tears. I’m in tears. What is left for me to do? So I utter a prayer. Many prayers actually. “Lord, please help me, I can’t do this anymore tonight. This child has to go to sleep. I have to go to sleep. There are so many things I need strength for tomorrow. Another unpredictable day is ahead. That is the only thing I am certain of, tomorrow is completely unpredictable. Please Lord, help us.” Lily’s cries turn to whimpers on her belly, on her tummy time blanket. The tears that have run down my face begin to dry and my shoulders drop a few more inches, the storm has passed. I pick her up as gently as possible and tuck her into bed.

This is our life. This is what every night used to look like. Sometimes the rocking and bouncing and music and crying and drinking milk would go on for hours. As I said before, seemingly with no end in sight. What else is a parent supposed to do? Pray. God hears me. He hears us. He hears Lily’s cries and knows her ailments better than we can and do. So we pray.

It’s been no coincidence that we have been led to various places and to various people for help and guidance. The times we followed the status quo, it seemed to return to result of more questions.  It was once we began to think outside of the box and follow our “gut” or God’s leading as I would prefer to call it, I think we have had more answers. My understanding thus far as to why God has given us such a special gift is because we refuse to just label her as something. Rather than treating her like someone. Someone very dear and special to us. We have set forth to go the extra mile for Lily. To continue to search. To keep looking for answers and solutions. And I’m hoping that in the meantime I can share it with whomever decides to read these blog entries.

I labeled this the truth because on the outside, if you see us out and about we may appear to be a normal family of 4. (whatever normal is anyway, haha…) Lily’s older sister tagging along side of the stroller. My husband or myself pushing the stroller and the other one of us not far from it. But there is so much that goes on within these walls, as there is in any other household, I would presume. But our life I can speak of, it’s the only life I know now.

There is little time for my husband and I together alone. There is little time or energy for leisure activities. Our days are filled with a lot of Lily face time, no I’m not talking about the app for your I phone, although it is similar. Lily isn’t interested in toys or books and any other “normal” baby things. She prefers to watch what you do. And she just wants us, all to herself, all the time. She studies. She watches and she sighs at times, furrows her brow and when she is bored with that, she will surely let you know. She will get a burst of energy out of nowhere and laugh a hearty laugh or make a howling sound. I often refer to her as the quiet spider because she often is content just watching the world around her. She is also commonly known around here as the cutest waker-upper ever. She really is. She will lay in bed making nearly inaudible sounds, just looking at her little bears that are printed on her bumper. I am grateful to say that most of our days get off to a good start, with smiles and quiet studying and laughter but that unfortunately changes quickly.

 My husband and I have coined a few new terms and phrases that only we would truly understand. Such as when describing our day- it was brain-melting. Or one-baby-circus. We can text these things to each other or say them in passing and know exactly what we’re talking about. If anything these new set of circumstances have helped us up our game in the communication department.  

 With the winter spewing it’s wrath all over Wisconsin, we certainly don’t go out much. We don’t have a regular baby sitter. We don’t have regular visitors. In fact we talk to less people now (not really by our choosing) than we did before we had Lily. The reason for that I think, is because I don’t think people know what to say. Because they know that with the events that have unfolded over the course of the last 11 months, we got rocked. There is no other way to describe that happened to our family. We did, we got rocked. We never saw this coming, nor would we have asked for it. Having said that though, having Lily in our life, we wouldn’t change a thing. If we did, we wouldn’t have her. And we wouldn’t give her back for anything.

She is beautiful. She is captivating. She is the strongest little person I know. She is a miracle in every sense of the word. There aren’t enough descriptive words in the English language to describe how truly amazing she really is.

Today Lily is 11 months old. God willing we are looking forward to more of this story unfolding. We haven’t made it this far without God’s help, I can’t say that enough. Thank you Lord for every day you have given us with Lily. Thank you for entrusting her to us.

**disclaimer**

These are my opinions. My account of our life and our experiences. Everything I have written here is not meant to be advice or a directive of any sort. Regard the information here as you wish. I am merely sharing our life experiences in the hope that there is someone else out there who needed to read this, just at the right moment, to know that they’re not alone. Much like we felt like we were alone at points too, until we found someone else who was going through what we are going through. I wish you Godspeed in your personal endeavors to finding a solution that WORKS for you, whatever it may be. Everyone is different and different things work for different people. God bless.