One of my favorite things about the weeks leading up to Christmas is going to the mailbox. I love the anticipation of seeing which beautiful family photo awaits my eyes. I feel blessed by these Christmas cards filled with love and peace. But my family Christmas greeting has a bit of a secret to it…and the secret lies behind the camera. This is not a revelation to my husband and most family members, but I am an absolute crazy, mad woman when it comes to taking the photos featured on those beautiful matte finished cards. I’m talking Mommy Dearest wire hanger scene, CRAZY!

This past Saturday was D Day…time to take the picture, you could see the dread in Andy’s eyes. We were a little late this year so it HAD TO BE DONE THIS WEEKEND, that was the first element of pressure. The second was the sun, it was too bright in the area I had previously scouted, so I was then on a mission to find a shady spot that fit my vision. Luckily, there was still shade across the street, so we headed to my neighbors backyard. Here comes my family…three kids in outfits they hate, a special chair for Katie, bag of tricks and all. “Get out of my way, I have to beat the sun!”

Lexi, my 7 year old, is a true professional she knows to just sit and smile or mommy will start yelling, she doesn’t want to be the instigator of that, but no worries Drew, in his 4^th year of life, fills that role. He isn’t old enough to understand that photo sessions are all about capturing the best shot of Katie. Bless her soul, she has no idea what I want from her, it’s as if she is saying, “Mommy I am trying, I don’t know what you want me to do.” She is just being herself, chewing on the new texture of her sweater, rocking back in forth creating a blurr on my camera screen or her eyes are rolled up. ”Andy, those eyes have to be down for the photo, put a light up toy in front of her, but pull it out quick so I can snap the shot.” And the orders are barked. “Pull her legs down, I can’t see her face, wipe the drool and it will be perfect.” But it’s not, her mouth is hanging open. “Andy, make her smile! Drew, look at the camera, Lexi, sit up straight!!!” Oh my poor family, this goes on and on for at least 30 minutes.

Throughout the photo shoot I experience so many emotions.

Katie, 1 year old, our second attempt went much better.

I think back to Katie’s first Portrait Innovations visit. It would be our first Christmas card and I wanted it to be adorable, but she didn’t get the memo. The experience was awful, we left with no photo and I sat in the car bawling afterwards. Thankfully my awesome husband encouraged me to go back and we got this gem. Now that Katie is 12 years old I think, if she were typical she would be the one getting the other two to sit still, why does it have to be so difficult?
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It’s difficult because I make it that way. What is my goal? A photo that captures my children looking the exact opposite of how they do on most days? What am I trying to hide? This year’s card doesn’t show Katie’s G-tube button, her wheelchair or her communication device. It features my ego trying to live up to the, “You’ve got it all together!” comments I get because people don’t see me behind the scenes. I’m trying to cover all that up and portray my June Clever side.

WHY??? Because I want more than what God gave me. I’m too busy trying to keep up with the Jones’, my card has to be fancy, my outdoor light display must stop traffic, and my gifts need to be the best ever given. And I must RSVP yes to every holiday event, it’s all just too much. Who am I trying to impress? It’s certainly not my family because they see the wrath of all this yearning for perfection. The wrath that is the complete opposite of what God wants for me right now.

Advent is a time to reflect on Jesus’ coming again at the end of times, it’s a period of preparing so we can be ready when He comes. “Be on alert, stand firm in the faith, act like men, be strong.” 1 Corinthians 16:13

If He comes tomorrow will He be impressed with my beautiful lighted garland lining my stair railing? Probably not! He would likely ask me if I felt good about the way I acted during the photo shoot, was I acting like He would act? NO!! I so often put the wrong type of pressure on myself. The pressure should be focused on following God’s will not achieving some level of perfect Christmas mom status.

A friend told me the other day, that instead of going to several holiday events on Saturday she said no and her family just stayed home to decorate the tree, and it was so amazing. We all need a little more of this. Time to just be with the ones we love, time to focus on all the gifts we already have. In this slowing down we lessen the pressure for more and more and more. We accept that what is around us in enough…that my children are beautiful no matter what the photo shows. So maybe one day I’ll get up the nerve to send the Christmas card with the real picture, the one that shows my family how we truly are, perfectly imperfect.

She was still so frail at 20 days old. She weighed only 3 pounds, wires lined her face and she slept most of the time. I had my concerns, but I still had so much hope for a normal life. When the neonatologist made his rounds I said, “Katie is not taking a bottle like the other babies, I’m beginning to worry”. I fully expected him to say, “Don’t worry, your baby is perfectly healthy.” But the words that fell from his mouth shattered my world.

“I think your daughter has a neurological condition, she will likely go home on a feeding tube and oxygen. But you are a smart lady, YOU WILL BE FINE.” He was so matter of fact, as if his words weren’t cutting through me like a knife. I couldn’t speak, I could barley breathe, I was in complete shock. During the following weeks it was my mission to prove him wrong, as if his words determined the future. I would interrogate every nurse wanting to know their opinion, some agreed with the doctor others did not, but they all said SHE IS GOING TO BE FINE.

Those words again. What did FINE mean? Back then it meant playing hide and seek, the pitter patter of tiny feet running through my house, cheerios thrown by the handful to the floor…it meant things would be the way I had always imagined they would be. His words destroyed that because I was not FINE with oxygen or a feeding tube or whatever else came with the neurological condition he so willingly threw our way.

The unknown nearly drove me crazy. All the genetic testing results were FINE. For at least 8 months we lived that FINE roller coaster. The words “She is going to be FINE” came at me like bullets from a gun…EVERYONE said it because truly they didn’t know what else to say. But guess what? Katie is FINE, I am FINE, and my perfect little family is FINE.
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So to the Neonatologist I would say, “Thank you! Thank you for your honesty and for respecting me enough to tell me I was going to be FINE. You didn’t know her prognosis for sure, you could have beat around he bush and ordered more tests or told me to wait and see, but you simply said what had to be said.” And to the “brand-spanking-new-first-time-mommy-me” I would define the word FINE.

Today FINE means loving my daughter for exactly who she is.  FINE means really bad seizures, tube feedings, IEP’s, and fear. But it also means success with a new communication device, bright smiles and happy days. You see, FINE is knowing that no matter what happens in life God has you in the palm of His hand. FINE means Katie is exactly who God wanted her to be, a pure and sinless soul who brings people closer to Him. In this world our plan is not always the plan God has for us. His FINE is so much better, so much richer…His FINE is perfect.

I find it very ironic, I prayed for so many years for Katie to be healed, but now I find myself praying to be more like her.  Her smile says it all, I long for that simple, pure joy. Happiness that comes from just being alive, a mind that it not clouded with the things of this world. She teaches me every day about true happiness.

My favorite moments in life come from the smile on my children’s faces. At a young age, Lexi and Drew have lost a bit of that innocence, smiles don’t come as easily from simple actions. But for Katie all it takes sometimes is my face. When she gets off the bus after school I kiss her and look closely into her eyes, then the corners of her mouth shoot straight up to her ears. So simple!

My mind is filled with too many things of this world…all the ways I could be better, the activities that would be more fun than what I’m doing right now, the vacation spot that would be perfectly relaxing, or just the fear I get from watching a newscast. Katie doesn’t know about all of that, and while I try to protect my other two children, there is no sheltering them from wanting more. Since moving my family to a remote island with no TV or outside influence isn’t an option, how do I get more of that innocence and better yet, how do I instill it in my two youngest children?

“Joy is a consistent attitude of peace, confidence, and satisfaction within you because you know a loving God is at work, we don’t produce it, GOD does.” The Power of a Positive Mom by Karol Ladd
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Katie is so lucky because her heart remains so pure and under Gods complete control. I have to remind myself every day, hand it over to God…let Him lead the way. It is a constant battle for each and every one of us to keep our eyes on God and to turn away from the things of this world. I think it has to start with simple things, like what we fill our free time with, the more we inundate our minds with God the more control He has over our hearts. It’s so easy to look around and see all the things we don’t have, all the material things that we think will make us happy. But God says it so plain and simple.

“Do not lay up for yourselves treasures on earth, where moth and rust destroy and where thieves break in and steal, but lay up for yourselves treasures in heaven, where neither moth nor rust destroys and where thieve do not break in and steal. For where treasure is, there your heart will be also.” Matthew 6:19-21

When we die the stuff we have will not be coming with us, none of it will matter at all. The things of this world can only bring us temporary happiness because at any moment it can all be gone. Even the people in our lives cannot be the source of our happiness, because we all die. But when our joy is rooted in just being a child of God, happiness is automatic because that cannot be taken away. That is what is so special about Katie…she brings joy, she brings peace, she brings love because worldly things don’t filter God, He shines through so brightly.

These words of advice have been calling out to me for days now. Last week, they came from my priest when I finally went to talk to him.  I grumbled, “I just don’t get it, my youngest went to five day a week preschool this year, there is no one home but me for several hours every day. I thought I would have so much time, but instead I am just running in circles trying to accomplish a million tasks never giving anything the full attention it needs. I can’t even write my blog! When I try to string thoughts together too many things flood my mind… I type, delete and then just stare at a blank screen.”

He looked me square in the eye and said, “Girl, you need to sit down! Take time for yourself, take time to listen to God! You’re role as a mommy has been redefined a bit, you need time to figure it out.” But how? There is too much to do to sit down. The dishwasher has to be unloaded, and reloaded from the morning disaster, Katie’s prescriptions need to be renewed, doctor’s appointments have to be scheduled, research needs to be done for several issues Katie is having, and then there is that daily trip to the grocery store…the next thing you know it is 12:30, time to shove lunch in my mouth and head to carpool.

But he was right, I had to find time to refocus myself, what is my new role in the quietness of my home. I was so used to the constant movement of three kids this summer that I got lost in silence. Not what I was expecting! But unfortunately my mind doesn’t know how to stop, it constantly races with all that needs to be done. That’s it!! An Ah Ha moment…what really needs to be done? Does the house really need to be perfect, does my to-do list have to be filled with check marks or is life much simpler?  I sometimes miss the beautiful moments, the moments of interacting with others. I’m in too big of a rush to actually listen to what my child needs, “Sorry honey we will talk later, we can’t be late for school.” Or I just look right through the nice lady in the grocery store who may have needed my help, I’m too focused on my list…always the list, that darn list!!

When I stop, take time to “sit down” and clear my mind I can hear God and He often says, “Just Love!” Everyday life presents opportunities to either show God’s love or not.  To stop and listen to Lexi or rush her along as if her words don’t matter. I can hook Katie up to her tube feeding with a thankful heart because she gets the nutrition she needs or I can gripe because it’s just not fair. I can yell at Drew to stop jumping on the couch or I can sit him down, patiently explain the dangers of his actions and thank God for his ability to jump. When I make my choices based on God’s will my life is way more peaceful.

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So as my role as mommy changes a bit I have a choice…I can strive for an earthy perfection that will never be enough or I can “sit down” and listen to what God has planned for me. It’s a daily struggle, but on more days I am making the right choices. The choices that lead to more love, more beauty and more peace.

“For God alone, O my soul, wait in silence, for my hope is from him.” Psalm 37:7

Some memories are fuzzy like, “What did I have for breakfast today?”, while others are etched in my brain as if they happened yesterday. One of the latter occurred just days after a doctor told us Katie had neurological impairment and would go home on a feeding tube and oxygen. I was on the phone with my sister and I said, “I can handle a lot of things, but I don’t think I can do this if she can’t talk.”

The thought of Katie never talking was more than I could handle because I couldn’t imagine a real relationship with someone who couldn’t talk…how would I know what she needed?, how would we “get” each other?, how would I know her favorite color or what she liked to do? And what about all the dreams I had for her?, how would she make her mark on this earth? I think the reason this memory is so etched in my brain is because I now know how very wrong I was to second guess God’s perfect plan for Katie’s life.

Katie has said so much in her silent 11 years. She changes lives every day and two of the most beautiful examples are developing before my eyes. Our precious nieces Allie and Jodie are both examples of Katie’s “mark”. At a very young age both Allie and Jodie saw the value in Katie’s life, they didn’t see her as disabled, Katie was just their awesome cousin.

Jodie started volunteering in the Special Education classroom in elementary school and continued through middle school. She says she wants to be a Special Ed teacher. On Jodie’s 11^th birthday instead of receiving gifts from her friends she asked for donations to an Early Intervention center Katie attended. And this summer I was brought to tears when she spent two weeks volunteering at a Special Needs camp. Instead of lying by the pool at home, she was tube feeding kids, taking them on inner tube rides and giving them an amazing experience. Focusing on other people and putting your own needs second is one of the most valuable lessons in life, I think Jodie learned this from Katie.

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These two precious examples are just a few I get to witness being Katie’s mom. So when I look back on that day 11 ½ years ago I smile and actually giggle a bit at how naive I was. How could I have been so blind, so blind to the fact that God has got this?

“For I know the plans I have for you declares the Lord plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11

His plan is so much greater than anything we can imagine. I am reminded daily that when life just doesn’t make sense and we can’t imagine something good coming from such tragedy, we have to trust in the Lord. What may appear broken to our human eyes is actually God’s silent messenger bringing lessons that words just can’t teach.

The sky turns a shade of dark grey, the wind begins to blow. I can hear the deep sounds of thunder rolling in the distance. The large drops of rain start slowly and a bolt of lightning flashes in the sky. Boom…the thunder is now on top of me and by now the rain is pouring, dime size hail is pounding while leaves and debris swirl in the air.

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After a short time, the rain stops and the clouds open to a beautiful sun which leads to a perfect rainbow.

We often refer to Katie’s “tough” days as mini storms. One minute all is well with the world and the next, not so much. Days when she cries uncontrollably all day and we have no idea why, or when she absolutely refuses to take one step, when her stomach is just too unsettled to keep anything down, or when she goes weeks without eating a bite of food by mouth. You see, the problem is she can’t tell me what is wrong, it is a complete guessing game. These days overwhelm me, because she is enduring pain and I don’t know how to fix it, it is my job to fix it…these days make me want to crawl into a storm shelter. But the thought that gets me through is…This Too Shall Pass.

“The Lord is my rock and my fortress and my deliverer, my God, my rock in whom I take refuge, my shield, and the horn of my salvation, my stronghold.” Psalm 18:2

If you hide your problems, viagra shop usa that can affect your confidence and make you feel stressed. It also repairs the damaged nerves and tissues purchase generic levitra http://www.unica-web.com/result2007.pdf in the reproductive organs. If you feel you are overdose with the medicine of erectile dysfunction which is buy viagra without . However, in some men, what cheap viagra browse around description now appears to an underlying health trouble. Just as those summer storms come and go her bad days always end. I know they are only temporary because for 11 ½ years we have endured every storm and on the other side is always a rainbow. When the problem she has been enduring ends I literally feel the weight lifted off my shoulders. The relief is so intense and the thanksgiving to God is abundant.

This past weekend we decided to take the kids to a nearby waterpark. I instantly started worrying about how Katie would do for an entire day out in the sun. Would she get too hot? Would she be able to go down a waterslide? How will her tube feedings go? I decided it would all work out just fine, but then my precious mother offered to watch Katie and after thinking it through we decided to leave her with Nonna. Then I felt guilty going on a fun family day without her. I felt sad that she has to miss so many fun things in life. But then I realized…This Life Too Shall Pass.

This life is only temporary and it pales in comparison to the next. The most amazing, most incredible day we can imagine here on earth is nothing like the Glory of God in heaven. So what if she misses a day at the waterpark! One day she will have so much more than all the waterparks in the world. I was brought to tears picturing the day I will see her in heaven. She will be dancing with two perfect legs to her favorite song Tooty Ta, using her beautiful voice to sing at the top of her lungs and when she sees me she will stop, smile ear to ear and run to me with open arms and she will say “I love you Mommy”. I absolutely cannot wait for that moment.

“Blessed is the man who remains steadfast under trial, for when he has stood the test he will receive the crown of life, which God has promised to those who love him.” James 1:12

In the storms of life we have to stay focused on the light at the end of the tunnel, the light that is God. If we rely on Him and Him alone He will be our storm shelter.

A long time ago someone very wise told me that if I sat in a huge circle with all the people I knew and put everyone’s problems in the middle I would gladly take my own from the pile. Very early in Katie’s life that theory rang loud and clear. She was only 4 days old and I was released from the hospital, we had to leave our tiny baby hooked to a million wires and go home. I couldn’t think of anything worse. How can I leave my baby here, I’m supposed to be rocking her in her bedroom tonight. And then as we went to visit Katie before leaving, the NICU was closed…one of the precious babies, half Katie’s size, had died. In comparison to what this poor family had to endure my troubles were nothing.

This has become a coping mechanism of mine. When life seems to be knocking me down before I can even stand up, it helps to know I am not alone. Everyone has problems and it may seem cruel to cling to the thought that someone else has got it worse, but I think this is how God helps me put my life into perspective. When we stay focused on our own situation we can drown in self-pity, but when we look outside, our sympathy can be put to better use.

“Bear one another’s burdens, and so you will fulfill the law of Christ.” Galatians 6:2

Another example occurred just last week, I was upset because Katie has just not been feeling great this summer. We were in the middle of a mini storm…she was sleeping a lot more than usual, very agitated all the time, refusing to eat anything by mouth and that day she had hurled buckets in the car. There was vomit in every crevasse of her car seat. Yes, so gross! I was in a very ill mood, to say the least. Then Andy told me his story of the day, he had called 911! What? As he was leaving a hospital for work an older couple was trying to walk to their car, the man fell and hit his head really hard, and the wife was so upset because he had just had hip surgery. In that moment, it hit me, that poor couple was probably feeling 10 times the hopelessness that I was. It snapped me out of my pity party and I asked God to bless them. My problems were not so bad anymore.

God equips each of us for our own trials not our neighbor’s trial. When you think about someone else’s problems they can seem impossible, “That poor older lady, I can’t imagine not being able to take care of my husband, and after the months it probably took for him to heal from surgery and he may be right back in the hospital, she must feel hopeless!”. But God has given her what she needs to deal with this trial in her life, and it is so for each and every one of us.
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“Three times I begged the Lord about this, that it might leave me, but he said to me, ‘My grace is sufficient for you, for power is made perfect in weakness.’” 2 Corinthians 12:8-10

His love is ALWAYS enough. The trials in life are not fair, so we think. But when we look at it from God’s perspective maybe they are blessings. God wants us to turn to Him during our trials, not to rely on the things of this earth. He doesn’t want us to take the easy way out just to escape our pain, instead He wants us to bring that pain to Him and rely on His love to get us through. And when we do this our relationship becomes stronger and He pours grace over us. There is no doubt that my life with Katie has brought me closer to God, I could not take care of her without His constant power.

We often see people who go through tragedies turn their pain into a way to help others. John Walsh comes to mind, his son Adam was kidnapped and he dedicated the rest of his life to searching for missing children. On a much smaller scale this is what I hope to do with my blog, if I can use some of our trials to show others they are not alone, I feel better.

God always turns pain into good if we follow His will. When we look back on our lives we can see the times He was preparing us for our trials. He was teaching us to endure pain, but also training us to transform it into His good. So when things get tough I try to look outside and count the many blessings on the inside. With His guidance I have turned my biggest struggle into my amazing purpose in life.