Monthly Archives: January 2015

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

Unanswered Prayers

Oh God, give Katie the ability to walk independently! Please God, if you let her talk I’ll do anything! image1 (4)God please, not a feeding tube, just allow her to eat enough this one time! God if you heal her completely I will share your miracle with the world, she would be the perfect proof of your existence to those who don’t believe.

This is how my conversations with God went in the early years of Katie’s life. What I was really saying was, “God please do things according to MY will because this life is way too difficult and I am not strong enough.” But God proved me wrong with His “unanswered prayers”. Back in the 90’s I loved that song by Garth Brooks.

“Sometimes I thank God for unanswered prayers, remember when you’re talking to the man upstairs that just because he doesn’t answer, doesn’t mean he don’t care.” Garth wasn’t an expert at English, but he sure could sing a tune.

Way back then I thought I got it, but that was before I really had something to pray for, something that I wanted more than anything I could have ever imagined. When I would pray for MY will and I didn’t get the answer I wanted, I got angry. The Bible says…

“Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks, receives; and the one who seeks, finds; and to the one who knocks; the door will be opened.” Matthew 7:7-8

I was banging on the door as hard as I possibly could and felt nothing. I couldn’t understand why God wouldn’t do this one thing for me, just this one tiny thing…heal my daughter. I had so much to learn and God was using this painful situation to teach me. When I read Matthew 7, I clung to that and just kept begging, but the Bible says so much more than just that.

“When Jesus came down from the mountain, large crowds followed him. A man with leprosy came and knelt before him and said, “Lord, if you are willing, you can make me clean”. Jesus reached out his hand and touched the man. “I am willing,” he said.” Matthew 8: 1-2

The man didn’t say, please God, I want you to heal me. He said, heal me if it is your will. He also said You can make me clean, he believed with all his might that God could do this. When we pray we must believe. But we also have to be open to His will in our life, I was not. But finally, I was beginning to see the prayers were never unanswered, they were answered according to His will.

“For I know well the plans I have in mind for you, says the Lord, plans for your welfare, not for woe! Plans to give you a future full of hope. When you call me, when you go to pray to me, I will listen to you. When you look for me, you will find me. Yes, when you seek me with all your heart, you will find me with you, says the Lord, and I will change your lot…” Jeremiah 29:11-14

He knows what is best for us, but He gave us free will. I can continue to beg for what I want, for the perfect life I had planned, I can be angry for the way things turned out or I can listen to what My Lord wants. This verse has always been strong in my heart. But I never understood it the way I do today.image2 (4)  It’s about me following God with all my heart and letting Him show me a way that is so much greater than I ever imagined. I know this because today I have greatness in my life and Katie was never healed.

So how do I pray? When I pray now I always say, “God please help Katie learn to use this communication device, if it is your will and give me the strength to bear it, if it is not”. And He always does. Here on earth we don’t have all the answers, but I believe if we pray knowing that God knows what is best, our lives will make sense. I believe this because Katie’s life makes so much sense to me now. She is not her disabilities, she is a powerful person who changes lives every day. I would still love for Katie to walk independently, talk and be completely healed, but if it is not His will I am not angry. I am grateful that He dwells in my heart and shows me my strength threw my trials.

Reaching Higher

When Katie gets home from school she is communicating so much more lately. I’ll say, “Katie did you have a good day today?” image4 (1) and she will smile ear to ear and nod “yes”. I’ll then ask, “Did you see Jerimiah?” she will nod “yes”, “did you see Brandon?” (I know he was absent) and she shakes her head “no”. And then the other day Drew asked, “How was your day Katie?” and as plain as day she said “GGG” not the word good, but she made the sound of a G, that is so huge. These glimpses of communication with Katie give me a feeling I could never describe in words. But they only occur about 20% of the time, I’ll ask again 5 minutes later and get a blank stare.

I am so very grateful for these glimpses, but they give me hope for more and lately I feel that hope dwindling away. That hope is that if she understands those questions then we can find a communication system that will help her tell us more.  Just yesterday I was trying to help her walk, but she just kept collapsing and then got a little fussy. I took off her braces and there was huge red spot that looked really bad on her foot. I felt horrible, she had been wearing them all day and that must have really hurt. Then during her evening tube feeding she was fussy again which is not unusual, but towards the end of the feeding she hurled massive amounts of oatmeal from early (sorry, I hope you are not as you read). And then just smiled because of the relief. So badly I want to give her a way to say, “My foot hurts, mommy”, “My tummy is not settled please don’t feed me more”.

I feel like we have tried a million different communication systems with very little progress. We started out holding up picture boards for her to touch her choice, she did okay with a group of 2, but since she loves to put everything in her mouth she would grab the picture and chew. image1This method was also very limiting in what she could say. So we tried a partner assisted scanning book, but that was way too complex. We then purchased an ipad with a program that allowed us to customize screens for her to make choices. But since she also loves the feeling of clicking the button to select her choice we realized that her answers were not always accurate, she was just enjoying clicking and that took precedence over communicating. So now we are trying a Tobii eye gaze device. A child uses their eyes to make a selection so the only feedback is whatever they are communicating for. We are in the VERY early stages of this and it could take her years to learn how to use it.

Last week after speech therapy I sat in the car and wondered, “Am I grasping at straws here? Am I expecting too much from her? Should I just be thankful for the yes and no answers I get 20% of time?” These questions drive me crazy. But I know that God wants every single one of us to work as hard as we possibly can while on this earth to reach our fullest potential. And it’s my job to help her do that. So as long as there is a path we will continue down it.

Then I thought, “If I am expecting Katie to give it all she’s got, what am I doing to reach my potential?” Am I where God wants me to be? Do I work every day to do His will? Do I work hard to stop the repetitive sins in my life?

“Even now the ax lies at the root of the trees. Therefore every tree that does not bear good fruit will be cut down and thrown into the fire.” Matthew 3:10

Father Robert Barron says God wants a daily renovation of our lives. He wants us to get to the root of what causes us to fail. We are human so we will fail, but we still have to work hard to turn away from our sins. I’ve said this before, but confession helps me because it is a regular sin check. My priest helps me get to the root of that sin. Barron suggests looking into our past to help discover why we continue to do the same thing over and over again. Because we must move past the root of this evil in our lives.

I receive a daily email from Regnum Christi, it is a fabulous devotional, but all too often I have 10 waiting to be read. A recent one was talking about Matthew 21:28-32, the parable of the two sons. A man tells one son, “Son, go out in my vineyard and work today” and the son says no, but later changes his mind and goes to work. He tells his other son, “go out in my vineyard and work today” that son says yes, but then never goes. In the discussion of this parable the question was asked, “When are you saying yes, but acting no” when it comes to God. What if we had annual reviews on our faith life like the ones at work? Would I score high enough to keep my job or would I be fired because doing the bare minimum is not enough.

It is not easy to follow what God wants us to do. If I feel like my faith life is simple and I’m just cruising along, then my standards are not high enough. I am not living up to this full potential that I am pushing Katie towards. I often catch myself using my time for me rather than for God. When we are Baptized we are called to put God first in our lives, even before our husbands and children. And definitely before TV, smutty books, and Facebook.

We are called to be prophets and that means speaking for God. Doesn’t that also mean that God should be on our lips regularly in every conversation? Father Barron asks, “Do the people you work with, your friends outside of church or even the store clerk at the gas station know you are a Christian?” If not, then we are not doing our job. “Preach with the beauty of your life so people will understand Christ through you” Barron says.

image5As I watch Katie work so hard every day of her life to do the most simple things, things that I do without even a thought I will use this as my example. I will follow her and do the things that don’t come easy to me. I will set my standards higher because I don’t want to just do enough to get by, I want to do all that God has in store for me. When I meet Him at the pearly gates I want Him to say, “Wow, you must be exhausted for working so hard for me, thank you” not, “You look well rested, your must have had a very comfortable life on earth”.

The 12 Days of Christmas

As I sent the kids back to school this week, after what seemed to be an extra-long break with a lot of rain, I had mixed emotions. Extended time with my 3 will do that. I felt sad that all the excitement of the holiday was over. Happy that the kids got to see their friends and teachers and get back to a normal routine. Thankful to get a little time alone. Relieved that I could actually sit down for more than 5 seconds. But guilty for feeling good about being away from my kids, guilty that stress led me to yell more than I should have over the past 2 weeks, guilty that I didn’t spend enough quality time with each kid, guilty that I didn’t do as much work with Katie. And sad that our break from school looked the way it did. Then I went there…

untitledSchool breaks can be a bit stressful for the most professional mommies out there, but when you have child with special needs it can be overwhelming. Katie either eats or tube feeds every 2 hours making outings difficult. Not impossible, we definitely do our fair share of feeding on the go. But we tend to stay home a lot and the walls start to close in.

Another item on the agenda at my pity party was the realization that Katie is getting bigger and harder to care for.  IMG_6745 She is now 11 years old and no longer a little girl. Recently her legs seem to be growing like weeds, and the extra inches make walking more difficult for her. Around the house Katie is not in her wheelchair, she crawls, we walk her or carry her. She needs her braces and shoes on to walk, but needs them off to crawl. I don’t always take the time to put them on and take them off, so I will carry her more than I should. And that, my friends, takes a toll on this 41 year old body. School breaks bring complete exhaustion, a sore back and aching everything. Lifting her out of the tub, up onto the extended changing table, and even helping her out of bed is getting difficult.  Just going outside to play breaks a sweat on even the coldest days.  One trip to put a blanket in the yard, another to get some toys, then back again to put on Katie’s shoes and braces so we can walk (I’m pooped just typing that).  By the time we sit, for what seems to be 2 seconds, it’s time to go feed again.

One day last week I got lost in a thought. What would our day look like if Katie were a typical 11 year old? She would be the big sister, the ring leader calling out, “Drew and Lexi, let’s go jump on the trampoline” and out the door the 3 would run. She and her cousins would have a blast since they are closer to her age. I wouldn’t feel torn between these two worlds. The world of carless fun seizing every second and the world of tube feedings, medication, responsibility and challenges. But then God said, “You have the best of both worlds.” So I snapped out of it and decided it was time to count my blessings. I didn’t write all of that to make you feel sorry for me, but to show that it is normal and okay to “go there” every once and while. I believe it is healthier to “go there” with whatever your challenge in life is in small spurts rather than bottling it up and exploding all at once.

I had to get my mind right. It is a conscious effort to refocus my train of thoughts. And then at a weekly mass Father helped me do just that. He said even though all the hoopla of Christmas is over in the world around us, Christmas had really just begun. Have you ever thought about the song “The 12 Days of Christmas”? In the Catholic church the weeks leading up to Christmas are advent, the season of Christmas doesn’t really begin until Dec. 25th and lasts for 12 days ending on January 6th, the Epiphany. That’s the day the wise men finally made it to Jesus. In our church we don’t even light the Christmas tree until Jesus’ actual birthday. So as we rush to put all the decorations away and storeowners fill their shelves with Valentine goodies we are taking away from the spiritual side of the holiday. I needed this to lift my spirits out of my gloom and doom.

Father also said something during this homily that made me think about my New Year’s Resolutions, that long daunting list of things I stick to for about 3 weeks. I decided this year my list is going to be very short. If I pick the right one then won’t all those others fall into place? Father had said something interesting about the song, “The 12 Days of Christmas” so I researched it’s true meaning. It was written at a time when Catholics in England were put to death for practicing their religion. The song is coded and each word represents a tenet of faith. Its purpose was to help children remember their faith in secret so they wouldn’t be persecuted. “On the first day of Christmas my true love gave to me…”  The true love referred to in this song is Jesus’ love, because true Love was born on Christmas Day.

My 1 New Year’s Resolution for 2015 is to Love like God loves, that love He sent us on Christmas day. If I put my focus on Him I don’t need to write exercise 4 times a week on a list, because I will realize God gave me this one body and I need to take care of it. I won’t have to add go to church every Sunday because my love for Christ will draw me there. I won’t have to put all this pressure on myself if I can just get my priorities straight. If God is first everything else falls into place.

If I love Katie with God’s love then caring for her is not so daunting. IMG_6914 Jesus never thought of His own needs, He always put others first. Remember at the last supper, He actually washed the feet of His disciples. So God’s love is a love of serving others. Putting others wants and needs above our own. During the break I got caught up in putting my wants and needs first. I wanted Katie to be normal so life wasn’t so difficult. But that is not love, it is being human, but it’s not love.

My 1 New Year’s Resolution does have bullet points, since being concise is not my strong point. To focus more on God’s love I will remember…

-God’s love brings gratitude. If I always see the great gifts in my life my heart will overflow.

-that love can only grow if I spend quality time with My Lord.

-God’s love is always found in others. It is a true blessing to give myself to others through being attentive to their needs.

-simplicity is always best. God’s love is not found in possessions or my iphone, it is right here in the things closest to my heart.

photo courtesy Emily Kuhn

photo courtesy Emily Kuhn

So when the next school break rolls around hopefully my attitude will be different. My focus will be on sharing God’s love with others not centered on my exhaustion or all the things I would rather be doing. It will be focused on the family that God so graciously gave me in all it’s perfection.