Monday, July 18, 2011

July 18, 2011 (Day 60) God will Provide

I will never forget on May 19, 2011, as we walked out to the car from our first diagnosis of Jackson’s heart the feeling of complete emptiness. As we sat in the car too paralyzed to drive off we called to inform both of our parents as they were anxiously waiting for our results. I remember so vividly as Chris hung up the phone with his dad, he buried his head in his hands and started to weep uncontrollably. I’ve seen my husband cry before, but in the form of a tear of joy or a saddened tearing up as we hug our family goodbye after visits. Never before had I seen his body convulse as he sank further towards the steering wheel of the car. He leaned over and grabbed me and in that moment, God spoke to me. I had to be strong. I had to be open to expressing emotions, and I had to track this journey.

On May 20th (Day 1) I began the obedient step towards expressing my emotions the best way I knew how to. I opened my laptop and I just began to write. As I wrote I felt as if God was speaking to me that someday my words would show Jackson the ups and downs of this difficult journey. After I finished one of my most intimate writings of my life God told me to create a blog out of it. I flinched for a second after reading it again and thought, “Do I want people to see all of this? All the pain, all the weakness, and all the emotions?” God gave me a promise that through my vulnerability and obedience to share that He would bless it.

I started the blog and I can’t tell you in how many ways He has used it. It was through the blog that we found a family in Houston that is allowing us to stay in an apartment above their garage while we wait for Jackson to come. It is through the blog that people are connecting with us on how to pray specifically for Jackson’s heart condition. And it was through the blog that we received information that a family wanted to make an anonymous donation towards us after reading our story. I opened the mail yesterday to find a beautifully written card with encouragement, verses full of promises, and $100 in cash from an unknown family in the Houston area that we have never met.

The most amazing part of this was the fact that we received that card the exact same day as our very first bill from Texas Children’s Hospital. We’ve had bills start piling up from all of our Austin care, but the first of the Houston expenses came on that very day that God had prepared that special card to come for us. So, to the wonderful family that sacrificed that money for us, thank you from the very bottom of our hearts! Not only is the money extremely helpful, but the timing in which God chose for you to send that was such a blessing. It translated into showing us that no matter what lies ahead that God will always provide.

God spoke softly to my heart to not be afraid to ask for help. I am one of the last people to ask for help when I need it, but through this trial in our life, God has shown us how and when to step out of our comfort zones and be okay with telling others when we need help. Whether it be in prayer, or in practical ways such as prepared dinners for our family, or help with watching Ava while we get things done. We have entered a phase now where God has allowed me to feel comfortable to acknowledge the need for financial assistance.

We have now added a donation button on the right hand side of the blog where anyone can make a donation of any amount with any credit card or paypal account. As our medical bills continue to climb we have other upcoming costs associated with staying in a different city as well as the cost of having Chris & I living separately until Jackson comes. As with every need in our lives we believe that God is going to cover it and provide. He has shown us over and over His amazing provision emotionally, physically, and financially as we have stepped forward in obedience. Having said this, it will be my first and last mention of making donations on this blog. This blog has been and always will be a place for my Jackson. Every word is meant to show him how valuable his life is even from the time that he was growing in the womb. We have so many needs as a family going through a difficult situation and the gift of people praying, following the blog, donating, bringing us meals, and supporting us is such a blessing! We continue to stand amazed as we watch God cover all the millions of details as we journey through this. We know that what seems impossible in the form of overbearing finances is completely possible with the Lord. May every penny speak of His greatness and may His glory be shown through Jackson’s special heart!

Saturday, July 16, 2011

July 16, 2011 (Day 58) And the List Making Continues…

6 AM, Saturday Morning and I am wide awake. 20 days and counting down until I move down to Houston to wait for Jackson and start the next chapter of this journey. I find myself laying in bed thinking of all the things I need to do and want to do before I leave. I make my lists and then try to create a balance of the “to do’s” and the family time we have left. Chris will continue to work from Austin during the week and take care of the house and then join us in Houston over the weekends. I find myself overwhelmed with details and trying so desperately to plan for something that I honestly have no idea how to plan for.

I find myself starting to panic about living in a new city by myself (with Ava), finding my way around, driving to doctors appointments ,all  while I am 36 weeks pregnant waiting for our little boy to come. With each day passing we can’t help but think about how he is going to do. Will he need surgery right away? How long will he be in the hospital for? Will he make it? Oh Lord, will he make it?

Nesting in the third trimester has taken on a new extreme meaning. Between teaching myself how to make hats for him during his stay in the NICU, lining up our places to stay at various points, trying to get our house ready for when we all come home, and packing us up for an unknown amount of time, I realize how thankful I am that God made me a planner. In so many times of my life I have wanted to be different. I wanted to put away my Type A personality and just be careless and free. Sometimes I get stressed out and my perfectionist part of my personality doesn’t allow me to fully embrace all the opportunities that I would like to enjoy. Then comes Jackson; the boy that is teaching me to be satisfied with who God made me to be. To find joy in the fact that I am uniquely made and to be thankful for the giftings that I have been given.

For with my Type A personality comes organization, planning, lists, and determination. We walk into every doctor’s appointment with “Jackson’s Binder” that includes directions for everywhere to go, a list of all specialist information, different heart diagrams, progress updates, paper for note taking, and of course his latest profile picture sits neatly on the cover. I make lists everyday and I think ahead. I take on details that may be insignificant to some, but to me every detail that goes into this journey deserves the utmost care. Whether it be in making extra calls, doing more research, making things special for our family, or seeing to it that everything is lined up right, I put my heart and soul into every line on my lists.

To me it’s not about a place to stay in Houston, it’s the home where we will fight for our family. It’s not about the specialist’s title, it’s about the skills they have to save me son. It’s not about making hats for Jackson, it’s about trying to make his first days as special as they can be. And it’s not about a list of things to do, but what God is going to do through the thousands of papers of details.

So today I am thankful to be me. Thankful to stand in the character and gifitings that He has given me. He has used my whole life to prepare me to be the wife, the mother, and the list maker that I need to be for Jackson. I can see in so many ways how He has blessed every detail that we have thought of and is handling the thousands that haven’t crossed our minds.  What a caring and loving creator we have. That so many of the things I have wanted to change about myself He has used for His glory!

Thursday, July 14, 2011

July 14, 2011 (Day 56) Weariness Hits

“Come to Me, all you who labor and are heavy laden, and I will give you rest.” Matthew 11:28

I woke this morning after barely any sleep last night to feel even more exhausted than I was the night before. Chris & I hurried around to get ready for work and for my next doctor’s appointment. Ava & I ran Chris to work and then headed toward the OB’s office. I looked at the clock, “Ok, 15 minutes to get there. We can do it.” We arrived on time and waited. We waited for two hours to be more specific. Our Austin OB had gotten called into an emergency c-section and so we had to cut my appointment into two different sections. As I sat trying to entertain Ava with as much creativity as I could, I began to hit this emotional rock bottom. It was one of those moments where you want to break down and cry but you can’t.

Six different appointments with specialist this week; Doctors here, doctors in Houston. Everyone needing something different from us and each one with a list of their own questions. Sometimes I just want to stand up and say, “I don’t want to be pricked by another needle, pea in another cup, fill out another family history form, sit in another waiting room, ride another elevator, and answer any more questions.” I am exhausted and just when I think I can’t do it anymore, I realize we are barely touching on the surface of the care that Jackson will need.

You have your good days and your bad days. You have your moments where you feel on top of the world to be receiving such amazing care and then you have your moments when all is said and done, your greatest desire is to never have to access that care in the first place. Behind each meeting with a specialist is just another reminder that we have a very sick baby. I try my best to put on a brave face and joke with doctors, but inside it kills me every time I find myself seated on another exam table. It’s so hard when everyone is excited to find a heartbeat at around 70 beats a minute just because it means he is still functioning, but I still feel extreme pain because that is no where near what a healthy baby needs to survive. Each time someone struggles to find his heart rate it’s like a dagger to my own heart.
Lord, I am so tired, so weary, so emotionally drained. I feel like I have reached my capacity and today on my wedding anniversary, I just can’t seem to pull myself together enough to even celebrate. Four years ago today I married Chris and have experienced the greatest joys and the greatest pain in my life during that time. I think back to that day and I remember crying before I walked out to see him for the first time on our wedding day. I was so happy, so nervous, and so excited for our life together. I sit here today, four years later having one of my more difficult days of this journey and find myself with grieving tears streaming fast. We aren’t going away for our anniversary, there are no gifts on the table, and with everything going on today, we aren’t even having a special dinner. It’s surprisingly one of the things I love most about my marriage. It’s not fancy, it’s not extravagant, and it’s simple in every way. As disappointing as it is to have one of my bad days fall on a day that should be a day of celebration, I see in its truest form a healthy and loving marriage at work.

See I know that when my husband comes home, he won’t expect me to be dressed up, the house to be cleaned, or even have dinner made. He knows me well enough to hear my pain on the phone and I know without question that he will spend his night comforting me, holding me, and calmly reassuring me. The fact that I know that he will do all of this is the best anniversary gift he could give me. Instead of a neatly wrapped package on the table or a romantic getaway for two, he gives me the gift of the most unselfish love everyday in the way that he cares and provides for me. He loves me on my best of days and on my worst of days, when I am all dressed up and when I rockin my pajamas all day. He loves me when I exude joy and he loves me when I cry out in pain. Simply put, he just loves me.

So as we experience our best of days and worst of days together, we fall more in love. We learn to meet the needs that each other has and work each day on piecing together the next steps of our life together. I love you without fail my husband. I am so blessed that God chose you for me…. I know I couldn’t make it through this with anyone else! May we never stop learning how to love each other and may we always learn to take life with stride as we allow the best and worst of times to bring us closer together. I love you more today than yesterday…. And I will say that every day for the rest of my life.

Monday, July 11, 2011

July 11, 2011 (Day 53) Be specific

Over the period of time that we have known about Jackson’s condition (53 days to be exact) we have been desperately crying out to the Lord. With each new step forward and new information that we receive we have become more and more confused about how to pray for him. When our pastor told us that he was starting a new study on prayer it was a complete answer to pray for us. We have spent the last two Sundays focusing on prayer and how to listen to God. Each week I am so encouraged as the Lord is growing my weak prayer life into a far more passionate one. What I have learned in the last while about prayer has been so crucial in my ability to pray for my son in a new and powerful way. It’s not about new vocabulary or a new position to sit in while I pray, it’s all about faith.

We learn from Elijah’s example of prayer for rain to cease that his prayer was:
1)      Specific
2)      Passionate
3)      Persistent
4)      Expectant

Up until now we have been afraid to be specific in our prayers because we didn’t want to set our eyes on one thing and be unsatisfied if God chose to do it any other way. I was afraid to ask for a miraculous healing in case God’s will was different, but I realized there are specific things that I need to come before heaven’s gates and plead for. So we covet your prayers as we travel to Houston today for a marathon of appointments tomorrow at Texas Children’s Hospital.
These are the things that the Lord has put on our hearts to specifically pray for:

1)      We want to see a 1:1 ratio of his upper and lower chamber heartbeats (right now his ventricular rate is functioning at half the speed making his heart rate at about 70 beats per minute where a normal baby is anywhere between 120-160 beats per minute.)
2)      We want decreased hypertrophy in his right ventricle ( his muscle build up has increased due to not being able to pump out blood fast enough)
3)      We want fully healthy & functioning valves- no leaky valves
4)      We want a corrected blood path when he is born (the doctors are not certain how his blood flow will go when his heart begins to function on its own- that first cry.)

Jackson, it’s hard to find words for you today other than that I love you. I love you enough to be stretched in ways I didn’t think were possible. I love you enough to push aside the distractions of my life and fall to my knees and plead for your life everyday for as long as it takes. I will be persistent, I will be passionate, I will be specific, and I will expect great and wonderful things for your life. I believe that God wants to use you in ways that I cannot comprehend. May you always look at your life and see value for you are loved beyond your wildest imaginations. Loved by family, friends, neighbors, strangers reading your blog, and most of all by your perfect creator. We stand in faith that God will use you and your special heart to testify to the greatest love the world has ever seen. That by your life others may see that Jesus saves and He heals the broken. That He fixes what no one else can and that brings new life to things that people declare worthless.  You my boy are a gift, one so preciously dear to my heart that the sound of your name brings tears to my eyes.  We love you and are on our knees for you…. We will ask, we will seek, and we will follow, whatever the cost because you are worth every second of it! Tomorrow it is....

Sunday, July 3, 2011

July 4, 2011 (Day 46) Popsicle Perfection

After moving to the Austin area from Oregon in May 2010, we found ourselves looking for fun activities to do on the 4th of July in our new city. We heard about something called Frontier Days at Old Settlers Park which was only a few minutes away from our apartment. They had activities planned all day, music, and movies in the park after dark. We headed over there with my sister Amy and her husband Addam. As we were walking through the tons of booths set up, we were approached energetically by a guy holding out a Pina colada flavored frozen ice pop. We struck up a conversation and soon learned that the people were part of Freedom Church which was a small start up church less than a year old. As we talked more, several other guys joined in and excitedly talked about how much they loved the church. They went and got the head pastor so we could meet him and we were handed a little information card with directions. We kept that card for another month and half before we looked at it again. I was still in place of bitterness after our miscarriage and the thought of trying out a small church body wasn’t what I wanted.

It was a month and a half later that we picked up the information card and finally decided we were ready to see what it was like. We walked into Freedom Church and from Day 1 I can honestly say that it was the most genuinely loving church body that I have even been to. We sat towards the back and immediately were floored at the message. It was like Pastor Benito knew that we were coming and knew everything about us. The message was directly in line with everything we were going through. We recognized the guy that handed us our popsicle and learned that his name was Johnathan. We met his wife Tanya and then just about everyone in the church. People were so warm, so genuine, so real. It was without a doubt, the best welcoming we have ever had into a church. We agreed that we would try it again and again until god either confirmed that it was the right place or showed us somewhere else.

Over the next few months we attended Freedom Church and every Sunday the message was right on with what we were struggling with and needed to hear. Little bit by little bit, my faith was coming back. I was being revived and the excitement for a walk with Jesus was returning. We started to spark friendships and joined a small group. We got involved and God met us exactly where we were at;  a couple struggling to make sense of the chaos of life.

We’ve been at Freedom Church a little less than a year now. Tomorrow, the 4th of July Chris & I will be there to pass out Popsicles at Frontier Days. The excitement is building as I recognize the divine appointment of last year’s meeting and the small card we received. We were lost, we were lonely, and we were struggling. That one piece of paper brought us to a place where we were fed spiritually and reminded of how much our Savior loves us. As for that energetic guy with the Popsicle, Jonathan  & his wife Tanya are now some of our closest friends. They have become part of our family and have traveled this difficult journey with us since the day we found out. They have helped us with our house, with moving, with meals, and most of all with their unwavering friendship. They pray for us, they cry for us, and they rejoice with us when times are good.

It was no coincidence that we went to Frontier Days on July 4th, 2010. It was no coincidence that God had Johnathan be the one to hand us the Popsicle. It was a divine appointment in which one card brought us to a place where God met us in a way that we have never experienced. A place where God has been growing us and preparing us for this very battle we are facing. God works through the smallest of details and you never know what things make the ultimate difference in someone’s life. For us, a melting popsicle on a triple digit day was the start of something awesome, the beginning of a rediscovered love for a God that so desperately wanted our hearts. I pray tomorrow that a popsicle would make that difference for someone else… 

 Johnathan, Tanya, & Hayden: We love you guys and are so thankful for you everyday! Thanks for living life with us!