Tag Archives: love

Changing My Desire

IMG_6555Over the last 12 years of parenting a child with severe special needs one might think I had mastered the art of prayer, but that would be false. In fact, it is an area in my life that I experience great struggle. When I pray I often second guess what I ask of God, if He knows the plans He has for me then who am I to ask for something different. But His plan can be tough and I have a long list of requests. So what words should form my daily prayers?

Way too often I ask God for changes that would make my life easier here on earth. “God, please help Katie learn to communicate!”, “Dear Lord, if you could stop Drew’s temper tantrum, right now, that would be great!” or “Please, make that annoying person in my life a little more bearable!” and my favorite, “I need help with this crazy chocolate addiction, make it go away.” The problem with these prayers are the desires behind them. I’m too focused on what God can change in the world around me, when I should concentrate on my own heart.

Brody-War-Room-690Andy and I recently watched the movie War Room (which I highly recommend)! In the movie Elizabeth’s marriage is on the brink of divorce, but when Miss Clara teaches her how to pray, her change of heart transforms their family. We can fight our battles every second of every day, and we can waste our time trying to change things that are out of our control or we can hit the floor and use the only weapon that really works.

“To win the fight, you’ve got to have the right strategy and the right resources, because victories don’t come by accident.” Miss Clara in War Room

We have to have the desires of Jesus. When my ego is at the center of my prayer I want others to change, I’m too proud to admit that I may need some fine tuning. But if our goal in prayer is asking for help to emulate Jesus’ qualities, then God is happy to oblige. God wants us to look beyond ourselves and love like Jesus does.

“But to you who are listening I say: LOVE your enemies, do good to those who hate you, bless those who curse you, pray for those who mistreat you.” Luke 6:27-28

And that my friend takes the right kind of prayer, because our earthly egos default to the exact opposite of these words. We all need a War Room like Miss Clara’s, a place where we can adjust the desires of our heart, a place where we can talk to God and listen to His precious guidance for our daily lives.

image2 (9)But what about all those BIG miracles I ask of God? The ones for Katie to be physically spared from the disorder that takes so much from her, or those prayer requests I encounter every week asking for miraculous healings for a one year old with cancer or for God’s saving grace for a dying mother of three. I do believe in modern day miracles. Like saints who have died, but their bodies stay incorrupt. Or the two miracles in which communion hosts physically turned into bloody flesh and when they were analyzed they were scientifically linked to the heart tissue of a man from the Middle East who had been beaten in the chest…Jesus. These miracles like the ones occurring in Biblical times serve a purpose, they are gifts from God to say, “I am here even though you can’t physically see me.” So when we pray for miracles our intention has to be focused only on God’s glory, not the easing of suffering in our own life here on earth.

“It happened that there was a man full of leprosy in one of the towns where he was; and when he saw Jesus, he fell prostrate, pleaded with him, and said, ‘Lord, if you wish, you can make me clean.’ Jesus stretched out his hand, touched him, and said, ‘I do will it. Be made clean.’” Luke 5:12-13

The words “Lord, if you wish” are key. My Regnum Christi devotional says those words portray the lepers true desire…he wants God more than he wants his cure. When I pray for a miracle for Katie, no matter how hard I try, my primary desire is for her to have a normal life, to eliminate her suffering and to ease the extra workload that our family experiences. I have promised God that I would claim His miracle every day for the rest of my life if He healed Katie, but God knows in my selfish flesh that I want it for us more than I want it for Him. My prayer now is that my spiritual life will mature in a way that all I want is His glory, not my own escape.

“Being self-absorbed and not accepting problems and defects is, in itself, an obstacle to being cured of them. Some lose patients in the fight because they want the cure more than they want the one who cures. … Openness to God’s time, detachment from an easy life, and total abandonment into Our Lords hands permits illness to cure the soul.” Regnum Christi

IMG_0113I believe the pain can sometimes be our miracle, it can be our healing. Katie’s suffering has changed my soul, as well as the souls of many others. It may not be the miracle I was asking for, but it’s pretty amazing. I think miracles like the healing of the leper happen to people who have soaked up every ounce of good that comes with the bad, those who seek Him above ALL else, those who want only what God wants, those willing to suffer for His glory. So as I enter my War Room and alter my desires, I pray… “Dear Lord, may my desires be your desires, may I want what you want, and may I accept what you give me with strength and dignity. Please humble me to love others the way you love me always forgiving and always looking for the good!”

The Plan

IMG_9710Both Katie and I celebrated birthdays this past week, I turned 42 and Katie 12. These ages make me feel old and bring questions about my purpose in life. Can we say midlife crisis? I’m not currently working outside the home contributing to society or to our household piggy bank, so there are days that I wonder if God wants more from me. Surely He has bigger plans than grocery lists and family meal planning.

Last year, when I started my blog I finally felt I was doing something meaningful, after all these years I was listening to what God wanted for my life. Writing has been an absolute life changer for me, I have opened old wounds and worked to reheal them in a more God centered way. But lately I just feel lost when I try to write. I worry that my words have no direction and that my posts are more like groundhog day simply repeating the same thing over and over. I criticize what I type and think if it were better I would have a million subscribers by now. Then yesterday I was reading my daily devotional Regnum Christi.

“Christ singles out each one of us for a particular mission in life. We might think of many people around us- educated, wise, learned people- who would surely be better suited for the calling at hand, who could do a far better job than we could. However, Christ isn’t looking for the cleverest person, the one with the quickest wit, or the one with the best education. Many times He scrutinizes the corners of the globe for the soul that is innocent, open to His plan,, and willing to carry it out.”                   Regnum Christi 12/1/15

Ok, I hear you God, loud and clear! I so often get confused about God’s plan for me, I think it should be big…huge…some cure cancer mission, but that’s just my ego. I want something outrageous so I can pat myself on the back, with my million subscribers cheering me on.

“Simplicity and humility are the key words when it comes to being chosen by God to participate more actively in his plan of redemption.” Regnum Christi 12/1/15

While I’m worrying about saving the world God says simplify…work locally for now. But so often it’s difficult to know if we are on the right track. I know He knows the plans He has for me, but I haven’t received the nicely typed letter outlining my instructions.

“True Knowledge of Christ and of God is revealed to those who learn to quiet their souls in prayer.” Regnum Christi 12/1/15

So my big fat mouth gets in the way? Who knew? I talk to God alot about my plan and how I want Him to help me, but I don’t listen enough. When I look past myself and stop questioning the words God gives me to type, when I forget about me and listen to God, He always shows me a better plan.IMG_9759 (1) Just like in my struggles to be the best mommy to Katie. Acceptance of her disabilities was not easy because it wasn’t a part of MY plan. But once I stepped out of my small mindedness I saw her for who she was, God’s precious messenger.

“God asks us to be like the Old Testament Prophets, planting seeds of redemption that may not sprout for years. We, like the prophets, aren’t always given the grace to see the entire picture.”             Regnum Christi 12/1/15

Less is more, simple is better. I think God is telling me to keep doing what I’m doing because if just one person is touched by Katie’s story, it matters. He doesn’t call each of us to fame and noterity for our contributions, but He does call each of to do our part and to me that means using my gifts and my struggles to share His great love.

Mommy Guilt

Is it seriously almost July?? On some days summer seems to be flying by,IMG_8624 but on others…you know those “I’m SO Bored” days, it is as if the second hand on my watch is taking 60 hours to circle. At the beginning of June I challenged myself to a New Summer Attitude. One filled with appreciating each moment and being truly present to my children, rather than my normal, “When are these kids going back to school?” attitude. But in this quest for a new attitude I have discovered one issue that is sucking the life out of me…Mommy Guilt.

As I’m cleaning the kitchen after breakfast the inner voice starts, “Clean up later, play with your kids now!” So I do, then the voice says, “This playing is great, but Katie needs to be working on communication!” So I switch gears, then the voice responds to my son complaining that I never play with him, “You don’t, bless his heart, that poor 3rd child! Oh and by the way, your house is a wreck, there are still breakfast dishes in the sink!” Then the cycle starts back at the beginning and continues all day long with me never accomplishing anything. Nothing I do is ever enough for ME!

IMG_8646I have an image of what a “good” mom is supposed to be, she’s featured in those Mother’s Day Hallmark commercials. She is patient 24/7 and NEVER yells at her kids, her home always looks as if her entire extended family is coming over, she always has healthy meals and would never think about using spray sunscreen. And guess what? On most days I feel the polar opposite of this mom, because my life is not “normal”.

Instead my oldest daughter is tube fed manufactured formula and many of our summer days are spent at the doctor’s office or therapy rather than licking popsicles in a hammock. I often think, I’d be a better mom if my life was “normal”. The guilt is intensified by Katie’s impairments. I know in my heart there is a neurological reason she can’t talk or walk independently, but I often wonder why I can’t fix it all by pushing harder. I ask myself, if she had a different mother would she be doing more in life. That inner voice is exhausting!!

So I pray, and recall a conversation I had with my priest a few years back (because yes, my mommy guilt is an ongoing issue). I asked him if guilt is from God or if it is just made up in my head. He said you truly have to look at the cause, guilt can actually be a grace from God when we are doing something wrong. But feeling guilty because you don’t live up to an image you set for yourself (hello, Hallmark commercial) comes from your ego…WHAT? He said when you are focusing on an image of perfection you are too focused on what you appear to be and that leads to false guilt.

We were each made in the likeness of God so when we set unreasonable goals and then beat ourselves up for not obtaining them it is like a slap in Gods face. It is the same as saying God you messed up, I’m no good. But He never messes up! The false guilt stills my joy, it constantly distracts me from living in the moment and enjoying my perfectly not so normal life. I’m too busy thinking about what I SHOULD be doing.

I don’t think I’m alone in my mommy guilt, I recently saw a video of moms watching their kids on camera talk about why they loved them. Each mom sobbed in disbelief, they couldn’t believe the special moments and attributes the kids were describing. If I could only see myself through my children’s eyes. Every day is dedicated to them, I am the only mommy they will ever have and in their tiny world I am the center.IMG_8589 If Katie could speak I know she would say you are doing enough Mommy, you love me and that is more than enough.

As I strive for this New Summer Attitude I have to also look through Gods forgiving eyes. He does not have unreasonable expectations, He simply wants me to get up every day and LOVE. It is that plain and simple! It is okay if Legos line my stairs and my kids eat an occasional Oreo, as long as live for Him. As long as I never take one moment for granted and stop “guilting” my life away.

The Old Me

Andy and I celebrated 13 years of marriage this week. IMG_7819 I was so excited to sit down with the kids to watch the VHS wedding video that hadn’t been played in years. But what I felt at the end was completely opposite of what I expected. I thought I would look back to that day and feel envious of the carefree, young person I once was, the young lady with my whole life lying ahead. But I wasn’t, instead I felt grateful for the battle wounds that have me in the here and now.

As I watched my friends and family speak beautiful words from their hearts and the sweet things Andy and I said to each on camera, I felt warm inside remembering such a special day. But as I watched myself I saw right through the old me. I couldn’t help but cringe a bit when my memory flashed back to where my mind was as I sat on the altar. I remember being way more worried about how I looked in my beautiful wedding dress and who was sitting in the pews in front of me, than the fact that an actual sacrament was taking place. IMG_7820 (1) I regret that I don’t even remember what the priest said to us that day. Don’t get me wrong, the day was perfect and the love between Andy and I was so very special. But I wish I fully understood then, that we were making a covenant with God and how very important that was.

After thinking about all of this for a little while I realized it is okay, and that life is about accepting each stage in life and learning from it. So if I could go back to that day I would do it the same because it was who I was at the time and that played a role in who I am today. God has a special way of loving us even when we don’t show Him the love and attention He deserves.

Andy and I joked this week saying, if our lives had flashed before our eyes the minute we first met, we probably both would have run far away from each other. But thankfully that is not how God works. We don’t get to see what the future holds because God saves each obstacle until we are ready, all the while preparing us.

I have a perfect example of this in my life. Before Katie was born God led me from a career in TV journalism to a public relations position at United Cerebral Palsy. When Andy and I got engaged my contract was ending so we decided it was best for me to move closer to him since we had been dating long distance. I considered a career change at that time and almost interviewed for a position that was available at UCP, but I ultimately decided to take another TV job instead. After only a few months I realized that it was indeed time for a change and by God’s planning that same position at UCP was still open, I interviewed and changed careers. I remember thinking this job was just meant for me, little did I know how that would play out in my life.

I had never been so exposed to the world of special needs. At this job I learned all about the different therapies we provided children with special needs. I wrote press releases, did interviews and helped plan fundraising events for these new precious people in my life. But I never even thought for one second that I would soon be one of them. When Katie was born I was exactly where I needed to be thanks to God putting me where He did.

So if God has prepared me and equipped me why have my last few blog posts been focused on how I am struggling so much? Haven’t I made it yet? With all we have been through shouldn’t I be sitting on easy street popping my troubles away like tennis balls with my very experienced racket? I wish it were that easy, but we never truly finish struggling until the day we die.

IMG_6489Katie’s impairments are truly my biggest struggle in life, but at the same time they are my greatest gifts from God. I get to experience a relationship with God that the “young wedding dress me” may have never found. Katie’s life has been my pathway to a richer and deeper existence. The “today me” still struggles, but I handle it differently. I have not mastered it, but with God as my guide my GPS is set in the right direction.

Fear Not

On a recent Sunday afternoon Andy and I were preparing dinner while Katie tube fed in the next room, Drew and Lexi were in Huntsville enjoying spring break with their Nana and Papa. I noticed Katie was unusually quiet so I went to check on her. When I entered the room I saw her limp body slumped over and her head lying in a pool of vomit. Her eyes stared straight through me, instantly I knew it was happening again. But this seizure was different, she was not convulsing, but she was breathing and not responding so we could only assume she was having a seizure, we went into action to administer a new “rescue” drug and call 911. The very familiar paramedics quickly arrived and we were off to the hospital. As I sat in the front seat unable to even see her, my fears ran wild. Once at the hospital it took 2 hours and several IV medications to finally bring life back into Katie’s eyes. But my thankfulness quickly turned into extreme anxiety.

Over the last 10 months our precious Katie’s seizures went from short and mild to intense and severe. Now they last hours, she has been hospitalized 5 times and put on a ventilator twice.image (19) - Copy But this time was different for me, I left the hospital with more than just a new seizure medication for Katie, I left with a fear I’ve never felt before. Once home I couldn’t sleep, I would lie awake for hours struggling to catch my breath because anxiety was taking over. The “what if’s?” are just too much for me to handle sometimes. We purchased a new video monitor which I thought would help, but instead I just stared at it watching her every breath. I continued to pray, but when you are consumed by fear it literally takes over. But after about a week I have finally calmed down and let God show me the way. IMG_7697 (1)

“Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you or forsake you.” Deuteronomy 31:6

God wants me to rely on Him for everything, so isn’t having fear the same as telling God, “I don’t trust you!”? Fear results from me thinking I am in control. “What if we miss a seizure and don’t get her to the hospital in time? What if I administer her emergency medication wrong? What if I forget one of her 7 daily medications or get the dosage wrong?” Those are real fears, but I have to let go and trust that God is in control. When I live in fear, led by anxiety, I can’t really live at all.

“Therefore I tell you, do not worry about your life, what you will eat, or about your body, what you will wear. Is not life more than food and the body more than clothing? Look at the birds in the sky; they do not sow or reap, they gather nothing into barns, yet your heavenly father feeds them. Are not you more important than they? Can any of you by worrying add a single moment to your life-span?” Matthew 6: 25-27

No, fear and worrying actually shorten our lives. I have to do all I can to make sure I take care of Katie. I need to always watch her, hence the 3 monitors that are now in her bedroom, make sure her medications are administered properly and I have to sleep with one eye open so I don’t miss a thing. But I don’t have to live in fear, there is a difference. Prayer and trust in the Lord will get me through this stage of life.

“Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” Philippians 4:6-7

I am a walking example of this verse. A week ago I was in a deep dark hole, walking around like a zombie, just going through the motions because my thoughts could not stray away from what our lives had now become. Depressed about the fact that things somehow changed with this seizure, reality had set in and our way of life had to become much more seizure centered. My thoughts focused on when the next seizure would come and would it be worse than the last one. But then I felt God’s peace.

“Peace I leave you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.” John 14:27

It is difficult to put it into words, but I know God has got this. He is the one in control and when I rely on Him the feeling that comes over me can’t be described. It’s the exact polar opposite of anxiety, it is God’s love holding me when I can’t hold myself.20141019-DSC_0416 - Copy (2) Katie is the most perfect child of God and I know no matter what happens on this earth God holds her too. So my fears of the worse are really pointless because while God’s plan may include a few bumps along the way, He is her ultimate destiny and that is all that really matters.

Her Purpose

When Katie smiles ear to ear it is like a piece of heaven on earth. Her eyes lock with mine and she beams, she reaches up to grab me and the world literally stops. I become truly present in that moment because I know it won’t last long. image1 (1)

In these moments Katie’s eyes say so much. She is saying, “I love you mommy! I am happy! You are doing enough for me! I know you love me!” She is saying all the things I have longed to hear for 11 years. I always say, “I love you, Katie!” over and over because in that moment, when she is more present, that is all I want her to hear. These moments can only be described as God entering my world.

I was reading a Lenten devotional last week about the Transfiguration, it reminded me of these moments with Katie.

“After six days Jesus took Peter, James, and John his brother, and led them up a high mountain by themselves. And he was transfigured before them; his face shone like the sun and his clothes became white as light.” Matthew 17:1-2

Father Robert Barron says the bright white signifies a divine beauty that is only seen on occasion in this world.  To me the moments with Katie are divine beauty. photo (7) I am trying to describe these “moments” but the feeling that overcomes me is indescribable. It is one moment in time where everything just feels perfect, I feel consumed with love like I have never felt before. That is her purpose on this earth, to show us that greater things are to come, much greater than this world could ever provide. I know that is God’s love shining through my precious Katie.

Like Peter I want the moment to last forever, I  don’t want to go back to ordinary life where Katie is distant.

“Master, it is good that we are here; let us make three tents, one for you, one for Moses, and one for Elijah.” Luke 9:33

Peter didn’t want that divine moment to pass, but the passage continues with “But he did not know what he was saying.” Father Barron says it is not the point to stay in these mystical moments, instead…“It is to become radiant with divine light so as to share it with the world.”

So often children like Katie are discounted, overlooked and undervalued. God gives the world  image (18)special children for very specific reasons.  I would not have chosen this life 11 years ago, but today knowing what I know, I would. Yes, it is difficult, and sometimes at night I cry because of the extreme challenges we face. But way more often than that I go to bed with a grateful heart, thanking God for choosing me to be a part of His beautiful plan. Katie’s simple smile has a purpose, if we stop to notice her we soak up the message that God is great and eternity with Him is more than we can imagine, then we spread this divine love.

True Beauty

Andy and I recently took a much needed beach getaway. On this trip, I rediscovered something I so often lose sight of, the true meaning of beauty. One thing I learned a long time ago is that in this world of special needs parenting time away is crucial, time to refuel, time to reconnect, and time to notice the things we miss in the daily grind.

image1 (6)As we sat on the beach bundled in coats in the chilly January temperature, I looked out at the ocean, the calm serenity of the water meeting the sand and thought, this is absolutely beautiful. God gave us so much beauty in this world and I’m usually too busy to notice it.

“Hearken to this, O Job! Stand and consider the wondrous works of God! Do you know how God lays his commands upon them, and makes the light shine forth from his clouds? Do you know how the clouds are banked the wondrous work of him who is perfect in knowledge?” Job 37: 14-16

Then I looked to my left to see the beautiful man that God gave me specifically for this journey. image2 (6)So often I take my frustrations out on this man and he loves me anyway. I also overlook his inner beauty as I rush to get a million things done in a day. But as we sit side by side on the beach I am reminded of his precious soul, his constant smile, his sense of humor, his strong voice that always calms me when the world is crashing in around us. In this world I am most thankful that God is very much alive in my husband.

“You are all-beautiful, my beloved, and there is no blemish in you.” Songs 4:7

As I continued to relax I was also reminded of the beauty in my family and friends. My sister and brother in law graciously gave us their beach condo for the weekend. My friends pitched in to get Lexi to her school open house, cheerleading practice and girl scouts. image3 (5) And my adorable dad was so excited to take her to the daddy daughter dance in Andy’s absence. My in-laws drove a total of 8 hours to and from Huntsville to take care of Drew and somehow kept the wild man in one piece. And our family there pitched in to entertain him. So many people gave of themselves so we could get away.

But the beauty that brings me to tears is my mom and her love and devotion to our precious Katie. This job was not meant for someone of her age (sorry mom, but at least I didn’t give a number). My mom was very nervous as I explained medication dosages, feeding tube schedules and how to strap her wheelchair. She’s done these things a million times, but to be the sole caregiver is a big task. All weekend she lifted her, changed her diaper and did absolutely everything for her just so we could get a break. She is so very beautiful to me.

I so often forget that beauty is not found in those 5 pounds I need to lose, the perfect skincare regimen, or the cute pair of “skinny” jeans found on sale at Belk. No, beauty is so much deeper, but in this fast pace life true beauty gets overlooked.

“Your adornment should not be an external one: braiding the hair, wearing gold jewelry, or dressing in fine clothes, but rather the hidden character of the heart, expressed in the imperishable beauty of a gentle and calm disposition, which is precious in the sight of God.” 1 Peter 3:3-4

smileWhen people look at Katie I see them recognize this beauty. They always smile ear to ear not because her hair is perfect or her clothes are adorable (quiet frankly, sometimes she looks like a hot mess) but because beauty shines from her soul. We see this so perfectly when we take her to communion, as we push her wheelchair back to our pew after she has consumed the body of Jesus Christ, people’s eyes just light up as if she is the most magnificent sight.

As I said earlier we all need breaks, we need time to stop and take in all the beauty this world has to offer. It is easy to feel guilty for getting away, for asking others to do your job for you. But in this, you share beauty with them. The beauty of giving and helping.

“Give and gifts will be given to you; a good measure, packed together, shaken down, and overflowing, will be poured into your lap.” Luke 6:38

When we stop the crazy rat race of life and take time to recognize what is beautiful in our lives we realize what beauty really is. I believe true beauty is God, and it is seen most perfectly when we allow Him to shine through us.

The Advocate

I have always been a bit timid when it comes to asking for what I want. I am a major people pleaser and hate to inconvenience others. Asking for something usually goes kind of like this, “could you maybe, possibly, if it’s not too much trouble, please…” And that is only if I get the nerve to ask. This really doesn’t come from a place of kindness, more from a fear of what others will think about me. I don’t want someone to think I am too demanding or unreasonable. Then Katie was born.

image2 (5)When you become a parent you quickly learn that it is your job to demand what’s best for your child. And when you have an 11 year old who can’t talk you better be good at it. My husband and I are her voices. We have to advocate for her. But what does that mean? It means A LOT!

It means we have to know everything about IEP’s and how to make sure her goals and benchmarks challenge her while also allowing for success. We have to research medical procedures and know every possible risk and benefit to make sure what the doctor recommends is best. We have to know about AFO’s and hamstring lengthening surgeries to ensure she keeps walking with assistance. We have to know the latest and greatest assistive technology on the market. We have to know all about wheelchairs and walkers and so much more. And when we know it “all”, we have to demand that Katie gets the very best of it.

We are so tremendously blessed with a team that loves and cares for Katie. A teacher who goes above and beyond to help her achieve her goals. A classroom nurse who takes the time to do everything exactly the way mommy does. Aides who love her like she is their own. A team of therapists like no other, the kind that stay up late at night when they can’t figure out the puzzle of Katie.image3 (4) A family that researches as much as we do so they know how to care for her and make sure she has the best. And friends who are always there with an ear to listen, a shoulder to cry on and a night out when we need to escape.

It really wasn’t until recent years that I truly learned how to stand up for Katie’s needs. God gave me a precious friend who was born fighting for what is right. She knows what her special needs daughter needs and will not stop until she gets it. I truly think she is changing the world of special needs. She changed my life by encouraging me to do the same. It’s not just about being assertive, it is about educating myself so I can confidently say, “this is what Katie needs and this is why.”

In this growth of learning how to speak up for Katie I have also learned to speak up for my Lord. A few years ago, I was all too comfortable just leaving my faith out of most conversations. And if someone questioned my religion I was quick to change the subject. That was because I didn’t know the answers. Now after several years of immersing myself in the Bible and my Catholic faith I am quick to shout it from the mountain top.

“Go therefore, and make disciples of all nations, baptizing them in the name of the Father, and of the Son, and of the Holy Spirit, teaching them to observe all that I have commanded you. And behold, I am with you always, until the end of the age.” Matthew 28:19-20

That’s a demand from God. He doesn’t say talk about me only in front of your church friends, be careful not to offend anyone who doesn’t believe in me. No, he says be ready to die for me.

“Then they will hand you over to persecution, and they will kill you. You will be hated by all nations because of my name.” Matthew 24:9

Every apostle, except John was martyred for their love for God. Would I die for Jesus like He died for me? I truly hope so. But thankfully in America right now I don’t have to worry about that, but so many people around the world do, right now. Here at home the very least I can do is learn much and share.

It’s easy to sit back and cruise through life never making waves, but we were meant to get out of the boat and stir the water. I believe this can be done peacefully if we ask for God’s guidance. It’s not about being right or making judgments when our beliefs differ. It’s about opening up those lines of communication and sharing something new, while being open to learning from others.

There is so much division in our world today when it comes to God. There are a million different religions with a million different interpretations of the Bible. And when we talk about God sometimes our egos get in the way. We want our beliefs to be right and we want to make sure others see it our way. Being Catholic I sometimes encounter those who think I am wrong for what I believe and that’s ok. But now that I know more I will kindly explain why I believe what I do. image1 (5)Why I pray the rosary, why I go to confession, why I Baptized my babies, and why I believe that the Eucharist is the true body and blood of Jesus Christ. That does not mean that everyone has to believe it, but I should be able to engage in a discussion about God without being defensive. I think these discussions lead to so much growth.

Our voices are powerful. I can silence mine and allow things to just be, or I can use it for God’s glory. I want to challenge you as well as myself to go deeper in our faith to learn why we believe every single thing we believe. God uses us to spread His word and in order to do that we must learn.  Just as Katie needs an advocate so does the Lord. Someone to be His voice and spread His word to the world.

“Therefore, my beloved brothers, be firm, steadfast, always fully devoted to the work of the Lord, knowing that in the Lord your labor is not in vain.” 1 Corinthians 15:58

The Greatest of these is LOVE

How do you connect with someone who can’t talk, who can’t say I love you, who can’t even look you in the eye? And how do you love someone you can’t connect with? Before I had Katie I often asked those questions when I would meet a person who had severe disabilities. I couldn’t understand how you could build a relationship with someone who couldn’t talk. I also remember a phone conversation with my sister when Katie was a newborn, before we knew the extent of her disabilities. I said, “I can handle a lot, but I don’t think I can deal with this if she can’t talk. She has to be able to talk!!” Fast forward 11 years and Katie has never spoken a single word, but she communicates love like no one else.photo (7)

To answer these questions we have to understand what it means to truly love. On Valentine’s Day a few years ago I was listening to a homily by Father Robert Barron. He was talking about 1st Corinthians 13. You know, the one about love that you’ve heard at most every wedding you have ever been to. It was read at our wedding, but I had never taken the time to study what each verse meant.

“If I speak in human and angelic tongues but do not have love, I am a resounding gong or a clashing cymbal. And if I have the gift of prophecy and comprehend all mysteries and all knowledge; if I have all faith so as to move mountains but do not have love, I am nothing. If I give away everything that I own, and if I hand my body over so that I may boast but do not have love, I gain nothing.” 1 Corinthians 13:1-3

Love is the center of everything. We can have all the things this world has to offer and all the things God has to offer, but if we don’t know how to love, none of it matters. Love is to will the good of other people. When I heard that statement I instantly thought of my parents.photo (6) They love me so intensely just like that, and never expect anything in return. They taught me how to love Katie with an unconditional love. If we are kind to others just so they will like us, or bring someone dinner in hopes they will return the favor or give a gift knowing they will give us one back, we are thinking about ourselves. We have ulterior motives, not love. When we put other’s happiness in front of our own we are showing pure love.

“Love is patient, love is kind.”

I lose my patience with Katie just like with my typical kids and it’s always because I am putting myself ahead of her. I want things done on my own time frame and according to my will. This is a tough one with a special needs child because very few things happen the way I want them to. Milestones are not met, outings are cancelled because she is sick, therapy sessions are cut short because she isn’t cooperating. If I were loving as God wants, my emotions wouldn’t be a factor. If we take ourselves out of the equation and look at what the other person needs, patience comes flowing out of our love for them. And kindness is the expression of this patient love.

“It is not jealous, is not pompous, it is not inflated, it is not rude, it does not seek its own interests…”

Jealousy isn’t a factor in my relationship with Katie or my other kids, but it does rear its ugly head in other relationships and it always comes from my ego. When someone else has more, does something better or just seems happier than us, we automatically feel less than. When in actuality their accomplishment has nothing to do with us at all. If you are a parent think about how good it feels to find out your child has succeeded at something. Then think about the same scenario with someone you are not as fond of, the accomplishment stings a bit. But we are called to love everyone, even those who don’t always make us smile. Jealousy usually leads to gossip, because if we can find someone to agree with us we inflate our own ego…the opposite of love.

“… it is not quick-tempered, it does not brood over injury, it does not rejoice over wrong doing but rejoices with the truth.”

Being Katie’s mommy requires a lot of one on one work teaching her very basic things, sometimes she does great and others not so much. At times when she has more difficulty learning I get frustrated, quick tempered…why? Because I feel like I am failing, I’m not doing enough to help her. What is that? You guessed it, my ego. It’s not about me, it’s about her and doing all things for her with love and not focusing on the results. Think about a time when someone really ticked you off. Then think about the root of that anger, it likely had something to do with your ego. But if we love properly we are not focused on our own feelings and we let insults roll off our back, because it’s not about us.

“It bears all things, believes all things, hopes all things, endures all things.”

It is hard to bear other peoples struggles, sometimes I just want to leave the room when Katie is sobbing inconsolably. Sometimes I do walk out for a breather, but I try to stay by her side, bearing her pain, enduring her suffering because I love her. photo (8)When we love others we are ready to bear anything for them. When they are in pain, we endure that pain too because we are focused on helping them not on our own self-interest. I have great hope for Katie, I have no idea if she will ever speak or walk independently, but I have hope, there is always hope. We have hope for those we love, hope that they will realize that life is about growing in their love for Christ, hope that they realize staying stagnant in their faith walk is never enough for God.

“Love never fails.”

God is love and God is eternal. If we love the way we are called to by God, there is nothing in this world that will end it. That’s a bold statement because people hurt us all the time. But again love is not concerned with our hurt, it’s focused on others. God calls us to love everyone even our enemies, it is His greatest commandment.

“If there are prophecies, they will be brought to nothing; if tongues, they will cease; if knowledge, it will be brought to nothing. For we know partially and we prophesy partially, but when the perfect comes, the partial will pass away. When I was a child, I used to talk as a child, think as a child, reason as a child; when I became a man, I put aside childish things. At present we see indistinctly, as in a mirror, but then face to face. At present I know partially; then I shall know fully, as I am fully known.”

Father Barron explains this passage as a comparison to our spiritual immaturity. When I was a child, obsessed with myself, with wealth and worldly pleasures I spoke only of that and did not have God as my priority. When I became a man, I put God first, I realized He is the only thing that matters. He also says this passage compares earth to heaven. We only know partially here in our flesh, but in heaven we will know fully and it will be more beautiful than we can even imagine.

“So faith, hope, love remain, these three; but the greatest of these is love.”

cropped-lA2.jpgSo how do I love Katie when she can’t say it back? Because I LOVE her, I bear her pain, I want what’s best for her, I know it is not about me and what she can do for me. It is the essence of unconditional love. That is the beautiful gift Katie has given me, teaching me that love can be so perfect when we humble ourselves and put our own ego aside for the good and benefit of someone else.

I Hope You Dance!!

My entire body filled with heat, my heart opened and the only thing that could fill it was God. It was October 2012, I was doing two faith based book studies. Both books changed me forever. It wasn’t so much the books, they were both really good, but it was simply the Holy Spirit using this moment to take over my life.

After this moment all I wanted to do was learn as much about God as I could. In my spare time I read, researched, prayed, wrote and simply learned how to give myself to the Lord. I no longer wanted to watch TV, or scroll down Facebook…I wanted more and more and more God. I really cannot explain the feeling, it was amazing and all consuming.

I was then blessed by a group of ladies that started meeting for a Bible study once a week, we still meet today. Before this study my knowledge of the Bible consisted of two phrases, Old Testament & New Testament. Our leader was sent to us by God, she goes through the books of the Bible sentence by sentence and explains what the Fathers of the Church say about that passage. If you’re not familiar with that term. The Fathers of the Church are the early Christians, like St. Augustine and St. John Chrysostom, who were taught by the apostles. What better source? Jesus taught the apostles, the apostles taught the Church Fathers and they wrote it all down. If you have a question about what a certain passage or verse means, the Fathers of the Church hold the answers. We have finished the books of  John, Acts of the Apostles and are now studying Matthew. I finally feel like I know the stories of Jesus and what He wants from us.

“When you look for me, you will find me. Yes, when you seek me with all your hearth, you will find me with you, says the Lord, and I will change your lot…” Jeremiah 29:13-14

I can truly say this is when I began to feel true joy, joy that I had never known before. I finally knew my purpose on this earth was to do Gods will. Everything else was falling into place. Being a mommy to Katie, Lexi and Drew made more sense. photo shoot 2013 052My role as a wife took on new meaning. One struggle I’ve had writing this post is making sure that I don’t sound self righteous, I’m so far from perfect it’s not even funny, and I certainly don’t know it all, not even a quarter. I screw up every single day, but I’m just writing about what God has shown me and what I TRY to aspire to everyday.

image (17)God has revealed a beautiful message through Katie’s life. Katie was not blessed with legs that function, a brain that forms words to speak, hands that write or even eyes to see. But I got all that and more, so how dare I waste one single minute. A song that portrays my feelings is by Lee Ann Womack, I Hope You Dance.

I hope you never fear those mountains in the distance, Never settle for the path of least resistance, Living might mean taking chances but they’re worth taking, Loving might be a mistake but it’s worth making, Don’t let some hell bent heart leave you bitter, When you come close to selling out reconsider, Give the heavens above more than just a passing glance, And when you get the choice to sit it out or dance. I HOPE YOU DANCE!!!! 

To me these lyrics mean to do everything you do with your whole heart and with all your effort. And since God is supposed to be the center of our lives. That means our relationship with God should have every ounce of our being. I am not going to even begin to say that I do this always. I struggle everyday because this world we live in has so much to take us away from God. Actually, I often feel this world is telling me God is not important. The world right now is so far from what God wants. I don’t think He wants us to modernize our values. He wants the single most important thing in our life, more important than our spouse, children, job, wardrobe, car and home; to be Him.

“Do not conform yourself to this age but be transformed by the renewal of your mind, that you may discern what is the will of God, what is good and pleasing and perfect.” Romans 12:2

The special needs journey or any struggle for that matter can be long, lonely and isolating. It doesn’t always lead us down the right path. I’ve taken many a wrong turns. But what I know for sure is the wrong road, the one in which we try to escape our struggles, will only lead us in circles. It only leads to more disappointment. As I’ve re-routed my GPS many times I found the only path is the one God wants us on, doing His will everyday, following His commands as diligently as we can. To keep myself in check, I try to reflect on the 10 Commandments and ask, “am I doing what God wants?”.

image (16)Another lesson Katie has taught me is that nothing on this earth will fulfill the longing we have. Katie has true joy and does not know anything about the materialism of this world. Again, I’m no model Christian woman, but I know God is my only source of true joy. I love listening to Father Robert Barron, he gives weekly homilies on http://wordonfire.org/. He often talks about this and once he had a fabulous example. Think about some of the worlds greatest sports figures. Barry Bonds, Mark McGwire, and Alex Rodriguez, to name a few, were all the best of the best, they had home run records, world fame and all the money you can imagine, yet they chose to take steroids in hopes of getting more. When it comes to worldly things nothing is ever enough. Why?

photo (3)That longing that we try to fill, that yearning for more was given to us by God for one purpose, to bring us closer to Him. We try and try to fill it with success, money, friends, and so much more. I don’t know where you are on your faith walk, but if God is not on the tip of my tongue always, I ask, why am I not giving Him every single bit of me, making Him the leader in my life. Do I want to sit it out or DANCE??

In my next post I will talk about why I think we have to struggle while on this earth.