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The Fire inside

I could feel the warmth of God filling my soul and an overwhelming reassurance that God was so proud for Katie to receive His body. This moment occurred on a recent Sunday as I pushed Katie in her wheelchair to receive Holy Communion. The feeling was surreal and truly difficult to put into words. As we went back to our seats the feeling became even stronger, I could see it in the eyes of my friends and people I don’t even know. After mass a dear friend came up to me and said she was so moved as she watched Katie receive communion, she felt it too, the presence of the Holy Spirit.

I haven’t always been so open with sharing Katie. When she was younger I truly just didn’t know how to handle public outings, pushing her wheelchair to the altar wasn’t something I would have even considered. At that point in my life the constant stares cut right through me and I just didn’t know how to handle that pain. But today the Holy Spirit gives me courage.

I remember the day I first received that strength. When Katie was 8 years old she started preparing for her First Holy Communion sacrament in Sunday School. This is when children learn about the true meaning of Jesus’s body being present in the Eucharist, after 9 months of preparation they receive His body for the first time.photo (3) It was a very special day, but it was the first times we pushed Katie to the altar in front of our entire church. It seems so silly now after doing it a million times, but then I wasn’t where I am now. At that moment I had to get passed some real fears, I had to stop worrying about what other people thought. I did and that day the Holy Spirit paid me a very special visit, giving me the courage and strength I needed to start sharing Katie more with others.

“When the time for Pentecost was fulfilled, they were all in one place together. And suddenly there came from the sky a noise like a strong driving wind, and it filled the entire house in which they were. Then there appeared to them tongues as of fire, which parted and came to rest on each one of them. And they were all filled with the Holy Spirit and began to speak in different tongues, as the Spirit enabled them to proclaim.” Acts 2:1-4

After Jesus’ crucifixion the disciples were hiding in the upper room fearing for their lives until The Holy Spirit came upon them. They needed this gift of courage to go out and spread Gods word to the world. We also receive the Holy Spirit at Baptism for the same exact reason. It stays with us forever, but I sometimes forget. Before this moment I was like the disciples hiding Katie in the upper room fearing what would happen when we went out. But God was ready for me to image1 (8)start spreading His name through her life and as He always does, at just the right moment, He gave me what I needed.

I know it is no coincidence that these moments of beauty and strength have occurred during communion because Jesus is present and when we consume His body amazing things happen.

“Amen, Amen I say to you unless you eat the flesh of the Son of Man and drink his blood, you do not have life within you. Whoever eats my flesh and drinks my blood has eternal life, and I will raise him on the last day.” John 6:53-54

I have to admit as a cradle Catholic I didn’t always see the Eucharist with the clarity that I do today. It is not something that is easy to understand. I remember learning in my own First Communion preparation class that in the middle of mass when the priest holds the large round piece of bread up over his head and repeats the words that Jesus spoke at The Last Supper, that at that moment God transformed that bread into Jesus’ body. But it wasn’t until I truly became mature in my faith that I understood this magnificent gift that God offers me every day of the year.

“For my flesh is true food, and my blood is true drink. Whoever eats my flesh and drinks my blood remains in me and I in him” John 6:56

Many of Jesus’ followers left when they heard these words because it was just not something they could conceive in their minds. Some things are black and white and easy to understand. But the deeper truths that God wants us to see are not as easily believed. That is why God gives image3 (6)us faith, somethings I just have to trust.

The source of that trust comes from precious moments where I feel the Holy Spirit in a very tangible way, like this recent Sunday and the one on Katie’s First Communion. I hate to think of the times I missed the Holy Spirit earlier in life before I was paying attention. I believe God touches us all the time in ways like these, we just have to be present in the moment to recognize that it is God.  I feel so incredibly blessed to have those moments where I feel God wrapping his loving arms around us and confirming that we are on His path.

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 Roller Coaster Ride of Life

God blessed us with another pregnancy. We were excited, but nervous. Then after just a few weeks I had a miscarriage. The on call doctor said there was likely something wrong with the baby and it would not have developed properly. She did not know about Katie. I was beyond devastated! The only thing I could think was, this baby had the same thing Katie has, but so severe it didn’t make it. To me that meant NO MORE KIDS.

I spent some time mourning, grieving the loss of this child. I later heard a story on EWTN radio, a priest said that when we go to heaven any child we loose to miscarriage will be waiting for us. Since I never met this child I had never thought of that, but since conception that baby had a soul. That brought me great comfort, I can’t wait to meet her or him someday.

I also grieved the loss of hope for the typical child I wanted so badly.  My desire for a typical child was not to fill a void, Katie filled my heart. image (12)I loved her so deeply, I can remember worrying that I couldn’t love another child as much as her. But I just knew our family was not complete.

After seeing my regular OBGYN, she reassured me that early miscarriages were so common and it was more likely a progesterone issue rather than developmental problems. After waiting the required 3 months we quickly got pregnant again. I look back in amazement, how did we have that courage. God is the only source of that peace because everything on earth said no.

“Trust in the Lord with all your heart, and do not lean on your own understanding. In all your ways acknowledge him, and he will make straight your paths.” Proverbs 3:5-6

If we rely solely on this world we will never make it, because in our worldly minds we have no idea what is possible. Our minds are so closed off to only what we see, what we know. But with God there is so much more, so much hope and so many beautiful opportunities.

During my entire pregnancy God gave me comfort and peace. I felt in my heart, “Whatever God has planned for this baby I will accept.” The first part of the pregnancy was smooth other than gestational diabetes which restricted all the yummy foods and required daily insulin shots. A small price to pay for a healthy baby. But when week 33 arrived, the same week Katie was born, I was admitted to the hospital for low amniotic fluid. Walking from the doctors office to the hospital was so surreal. My mind was racing, but since the issue was different from my pregnancy with Katie I felt okay. I ended up on bed rest for the rest of the pregnancy.

Thankfully we had so much help with Katie from our parents. I don’t know what we would do without their constant love and support.

image (10)In May of 2008, we were blessed with the arrival of Alexis Drew Crook one early Sunday morning. She was perfect in every way. I quickly realized I was wrong, instantly my heart grew bigger as I fell in love with my new baby girl. Lexi must have thought she was a rock star as we marveled at all the things she could do. Katie loved her too, I can’t explain it, but I knew from the beginning these sisters had a different love, a deeper love, one that would go beyond words spoken or hugs given, one founded by God for a special purpose.

A sister is a gift to the heart, a friend to the spirit, a golden thread to the meaning of life.

Isadora Jamesimage (9)

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We grew into our not so normal life. We learned how to use a wheelchair, Lexi learned what seizures looked like way too early in life and Katie just couldn’t gain weight. At 5 years old she only weighed 25 pounds. After years of struggling with the idea of a feeding tube it finally became a necessity.

So we did it, that’s when I really felt like a nurse. Syringes, feeding pumps, extension tubes, a button in her stomach, it was all quite an adjustment. Not to mention the doctor read an x-ray wrong and did not do a procedure she needed, so at first she literally threw up everything we put into her belly.  I have never been hurled on so many times! Cleaning up vomit was as ordinary as cleaning toilets in our house. It actually became a dark time for us.

The part that no one told me, because I really didn’t have a special needs mommy mentor, was that just because you recover from one stage does not mean you’ll never hit the bottom again. I feel like this life is a roller coaster ride, just when you think you’ve made it, your seat goes flying down hill with no end in sight.

The feeding tube required a whole new way of life, since she vomited so much we could only feed her small amounts every 2-3 hours, which is basically what we still do. It makes leaving the house a challenge and for a long time we just didn’t leave. My anger grew again as I became bitter and jealous of everyone else’s life. We now had a typical child and I wanted a typical life. That was an emotion I didn’t expect. Before Lexi, I didn’t know what normalcy was so I didn’t miss it as much. But now I wanted to go and have fun outside of four walls that seemed to be closing in on us.

Just because you have a close relationship with God does not mean you avoid pain. With my stronger faith the depth of this pain just didn’t seem as bad. I knew I had gotten myself out before, I knew I could do it again.

“But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gadly of my weaknesses, so that the power of Christ may rest upon me.” 2 Corinthians 12:9

Next post the Roller Coaster continues.