Tuesday, June 21, 2011

June 21, 2011 (Day 33) And the crib goes up!

Tonight we started getting Jackson’s room ready for him. Over the past week Ava & I have been spending quite a lot of time in his room playing and talking about how excited we are for him to come. Ava brings her baby dolls into the room and loves to dress them up in a few of the outfits that we have picked up along the way for Jackson.  She cuddles them up in blankets or “cozies” as she calls them. Her new favorite thing is to rock her baby named Jackson to sleep in the rocking chair we moved into his room.  She finally asked about a bed for Jackson today so as soon as Chris got home we got right to assembling the crib.

Every step of the way has such mixed emotions for us. On one hand the joy we feel as we think about bringing him home is overwhelming because we were told that it was highly unlikely that we would ever be able to do so. On the other hand still being faced with a very difficult and intricate heart complication, there is still the reality that we may never bring him home. With each step we take closer the anticipation builds. One minute I feel confident that Jackson will defy science and be with us and the next minute I feel the weight of what could still be the painful truth of losing him.

As we set up his crib Ava hurried around the room handing Chris all the screws and trying her best to help in every way. I kept thinking, “Lord, am I protecting her from what could be? Am I guarding her heart from what the outcome could be?” It’s so hard to find the right answer to these questions. I want to feel all the same joy as other expectant parents as  they prepare for a new baby. I want the giddy anticipation of what he will look like and when he will come. Some moments God is gracious enough to allow me to block out our circumstances and just feel excited about Jackson. For that I am extremely thankful.

I want to embrace the miracle at hand. The fact that every day a baby is growing inside of me is an absolute miracle. The fact that his heart still beats even though basically all of his “plumbing” is so incredibly incorrect that it has amazingly corrected itself is a miracle. So as I sat in the rocking chair tonight next to his newly decorated crib I thought to myself, “How blessed am I as a mother to experience firsthand a miracle each and every day. How wonderful is it that when I walked away from terminating that I allowed my son the chance to come home.” That is what we have. A possible life with him is better than sitting every day assuming that we never will. So with great joy I turned off his lights in his room, took one last look, and smiled. Someday….

 Ava working away at assembling the crib.


Monday, June 20, 2011

June 20, 2011 (Day 32) Obedience

As with anything in life and especially trials that we go through, obedience is a choice. I am always closely reminded of that with having a toddler. We always tell Ava, “Make a good choice, you have to choose to listen and obey.” These words are repeated hundreds of times during the week and at times I feel like a broken record. I am sure in so many ways God experiences this on a daily level with me too. The frustration that you feel as a parent when your kids disobey is difficult, but the extreme joy can not be measured as you witness your kids making the choice to respond out of obedience.

The other day while reading the book My utmost for His Highest by Oswald Chambers, I came across a quote that completely turned on a huge light bulb for me. It says:

“The tiniest detail in which I obey has all the omnipotent (unlimited or infinite) power of the grace of God behind it.” (Excerpt from June 15th devotional)

I sat there to let it soak in and it totally changed the way I had ever thought of obedience. As I continue on my journey with the Lord there was the very real revelation that by me choosing to disobey I am left with nothing, yet when I choose to obey that act has all the power of the grace of God behind it. It completely compelled me to want that heart to quickly respond out of obedience to God.

As I read a book on David & Goliath to Ava for nap today it was explaining the story in a very simple way. It said that David spent his days with the sheep as a shepherd and God gave him all that time to learn how to practice fighting Goliath. It was another light bulb for me as I considered the huge truth behind that simple phrase. You would think that God would have sent David off to battle with his brothers to prepare him to fight the fiercest battle with Goliath. You would think that David would have been known in all the land as the mightiest fighter before he was chosen to fight the giant. And yet we see God taking David away from all of it into the fields to protect the sheep. It was there that David was taught how to “fight giants.”

God used that time in David’s life to allow him to focus on who God was. He protected the sheep from fierce predators with his sling and his stones. When the time came, when all others were too focused on tactics, David had created a daily routine of obeying God in the tiniest of details and was ready for the battle. He chose to obey because God had created that heart in him all his days being spent as a simple shepherd boy.

I look at Chris & I and I see exactly why God chose us. When all is said and done, God will receive 100% of the glory. I am 24 years old, a college drop out, a stay at home mom with no medical background, and we live off of a small single income. My husband is a contractor turned tech salesman for Dell with no college degree.  In terms of the world, we are lower class and uneducated. But, to God we are couple who He has been taking through the fire since our marriage began instilling in us a heart to obey. So, no I don’t have a college degree or a fancy career title, but with every detail of my life as I strive to obey, I have the complete infinite power of the grace of God behind me. When all is said and done Chris & I will not be able to say that we were educated to understand Jackson’s heart condition, that we were well off enough to pay for all of his care, or that  we were wise enough to know what to do.  But just as David had his sling and his stones, Chris & I stand daily at the battlefield with our simple tools ready to move in the direction God has for us.

There is nothing simple about how David took down Goliath and yet all that was physically used was a small sling and a stone. The real power and the real weapon was that David chose to obey the calling of the Lord and with that a simple swing of the sling was carried by all the omnipotent power of the grace of God. The people watched in amazement as the young boy defeated the giant. Lord, may you create in me a routine of obedience so that when you call me to respond, my choice is that of a willing and able heart to run to the battlefield with confidence that you are with me!

Friday, June 17, 2011

June 17, 2011 (Day 29) Joy Returns

Chris & I woke early this morning to get ourselves ready for our first appointment with the Houston medical team at Texas Children’s Hospital. We wanted to be fully prepared and were feeling overwhelmed on how to get there, find a parking garage, and locate the right building. Needless to say, we pulled into the parking garage an hour and 20 minutes before our appointment. On “Elliot Time” as we like to call it, that was a miracle in and of itself. We are always late, but definitely not today. We found the building, rode the elevator up to the 20th floor of the West Tower, and as the door opened our experience truly began.

A woman wearing a red shirt who worked there was waiting for the elevator to go down and she smiled at us. She said, “Are you Kathryn?” She introduced herself as Yvonne, the woman that had called to coordinate my appointment on the phone. She gestured where we should check in and said that she would page the doctor to see if we could get an earlier start.  We were amazed at the perfect timing that as we walked out of the elevator God placed someone there that would recognize us, direct us, and give us a gleam of hope with her smile. She got onto the elevator and headed to wherever she was going and there we were opening a set of glass double doors to the Cardiology Care Center. As we went through the doors, I began to cry. I sat at a small couch right there at the entrance and Chris began to softly speak to me. It was the overwhelming combination of, “Why in the world are we here” and “thank you Jesus that we have access to this kind of extremely advanced care.” We checked in and waited for our names to be called. The room was filled with all ages of children and their parents waiting to be seen. Out of one of the scanning rooms came walking out a boy about 4 years old with silly google eyed glassed and a sucker. Laughing as they sat down across from us I couldn’t help but grin at his adorable little face. He removed his glasses and his parents sat gently talking and joking with him. I kept praying, “Lord let this be us in four years, please let this be us.”

Our names were called by Lisa who was one of the women doing our echocardiogram. She smiled at us and had such a gentle voice that it calmed my nerves almost instantly. We went to the scan room and there we saw Dr. Nancy Ayers for the first time. They were wonderful to explain to us exactly how the appointment would go and laid out a plan as far as what they would be doing before, during, and after the scan. They must have read my type A brain and knew that I only function well with clear communication and a good plan. We started the scan and they were both so wonderful to make me feel as comfortable as possible.

The room was quiet most of the time as they studied the heart, took the pictures they needed, and searched around for answers. Chris sat holding my hand the whole time and I just began to pray over his little body.  I only shed a few tears during the exam, but as we ended Dr. Ayers was wonderful to take several baby pictures for us to take home. We got a profile shot, some toes, his fist, his heart, and his little face. As we saw his growing body on the screen it gave me pure joy. It’s hard to explain how much you fall in love with your little one even as they grow in the womb. I will say that I have a unique bond with Jackson since we found out about this heart condition. I think my already bursting with love mothering heart grew about 10 times the size for him the day we found out that he had his “special” heart.

We consulted with Dr. Ayers after that in her office where she explained that he does have CCTGA (look to the right of the posts to see more about his condition with links). However, they are highly optimistic that because the condition of other worrisome parts of his heart are doing fairly well they have extremely high hopes for his survival. We do know that he will need a pacemaker at some point in his first year of life, but an exact date will have to be figured out at a later time. Carmen, a nursing coordinator for the fetal center joined us during our consult where she explained that her role is coordinating every step of our care from appointments, to questions, to getting us linked to the Ronald McDonald house, etc. We call her our “new best friend.”

She took us on a tour of the facility along with St. Luke’s where I will be delivering and all the intensive care units where Jackson will receive care. We walked through one of centers where there were rows of beds of premature babies, heart babies, and other babies with difficulties. She showed us the type of bed that Jackson will have and explained to us that we will be able to touch and hold him while he is being monitored. This was like music to my ears. My heart skips a beat to even think about holding him some day. Weeks ago we were told the odds all pointed to a stillborn birth and now today to be told that I will be able to hold him alive was like the world’s greatest gift.

Carmen answered so many questions for us and was so extremely helpful. Since we found out about Jackson’s heart I kept asking God, “when will I feel joy, real joy again?” I have had my good and bad days since finding out, but even on my good days, I still feel a very different joy. I can honestly say I felt real joy today again. I felt hopeful.

To all of the staff at Texas Children’s Hospital (Dr Nancy Ayers, Lisa, Yvonne, and Carmen) you are incredibly gifted and wonderful beyond words. In a matter of hours you took us through an amazing experience that I will never forget. It was such an advanced facility medically but at the same time such a sympathetic and caring one as well. There are no words for this team of people who are fighting with us to save Jackson’s life. I feel honored and blessed to be part of an amazing work that God is doing through Jackson.

May 19, 2011. Diagnosis and option to terminate.

June 17th, 2011. New diagnosis. Hope Returns!

?, 2011. Jackson comes home.

Jackson. Defined as my God is gracious. We believe….. Lord, be glorified!

Tuesday, June 14, 2011

June 14, 2011 (Day 26) God, you are doing it!

Ava was our unexpected miracle. Her pregnancy surprise came right smack after our honeymoon and we were as shocked as anyone that we were about to jump on the parenting boat. I still felt like a kid myself, but I knew that being a mom was my deepest desire. Then came our pregnancy with Jaiden that was also unplanned, but so exciting. Ava was only about 8 months old and I was shocked that I was pregnant with yet another baby. Our minds automatically switched from single child to the mindset of planning for two kids. We were overjoyed and then came the miserable night that I began to miscarry. 

Since then we wavered back and forth as to when you pick back up the pieces and try again. We didn’t want the next baby to feel like a replacement, but we also knew that we wanted our kids to grow up close in age together. We thought about it, we prayed, we even tried for a bit and then stopped. It wasn’t until we moved to Texas that we felt peaceful about trying for our next baby.

January 2011 rolled around and on our way back from a worship night at church we pulled off at a Walgreens late at night and picked up a pregnancy test. I couldn’t wait until the morning so I tested the second we walked in the door. Within seconds there was a perfect positive sign in the small window of the purple stick. I burst into our bedroom where Chris was beginning to lay Ava to sleep. The look on my face and the fact that I was jumping up and down was a clear indication that we finally got what we wanted! So many times I thought through how we would tell Ava when we were to get pregnant again and then on this very night all that thinking went out the window. Chris jumped up and said, “Really???” We were laughing and hugging and then we noticed Ava jumping up and down too even though she had no idea what to be excited about. I just looked at her and giddily said, “Ava, we are having a baby, we are having a baby, we are having a baby.” She screamed and then said (direct quote), “I am so excited, I am laughing!”

It was a priceless night in my book of memories. So unplanned, so not thought through, and yet as a family we all got to experience together the exciting news of another baby! I wouldn’t change it for the world as I was able to experience the raw emotion of my family as we looked forward to our long awaited second baby.

As we have journeyed through this pregnancy there have been amazing times and then of course excruciating times. However, I will say that not all of the good days were all prior to the diagnosis for Jackson. Through the pain and the sorrow, God has brought along so many blessings to show himself more real to us than ever before. He has brought along prayer warriors, those gifted with research, people gifted with hospitality, and strangers that out of the goodness of their hearts have extended such sacrificial love to us. I am more blessed today than I ever have been. Even in my best days I never thought that I would experience God in the way that I am now today being one week away from a third trimester pregnancy of the so called “impossible” baby.

I told God from Day 1, “I don’t know how you are going to carry me through this. I don’t know how I am going to bounce back from this, but I know that you will do this with me.” God, you are doing it! Day by day you are showing yourself merciful and mighty. You are taking care of our needs and you are holding us strong in your arms. I honestly don’t know how you are doing it, but GOD YOU ARE DOING IT BETTER THAN I COULD HAVE EVER PLANNED!

Jackson, you were planned, you are wanted, and you are loved by so many. God is using you in ways to touch lives that I never could. You my sweet boy are encouraging people in their faith, you are causing people to exercise their giftings, and you are challenging those to view God from a new perspective. Keep fighting. God is being glorified with everyday that your heart continues to beat! God’s not done yet, we are only just beginning.

Sunday, June 12, 2011

June 12, 2011 (Day 24) Open the door

On May 3, 2011, we closed on our very first home. Since it was a foreclosure we worked around the clock day and night as we tried to make it ready to move into as quickly as possible. With each day we were closer to making our dream our reality: Home Ownership! Within the first week of owning our home we painted every wall with lots of help from family and friends. Jackson’s room got painted a special pewter gray that I had thought would have a calming affect for a nursery. We were all excited and set for a move in date of May 22nd.

Then on May 19th, only four days before move in everything changed. “You have to make a decision if it’s worth it to continue the pregnancy at this point knowing the complications and the risks. In the state of Texas you have about 7 more days….” The words from our doctor were like being hit with a truck. The tears came faster, the pain grew larger, and all I could do was hold my hand up to stop him from finishing his sentence.

Jackson’s bedroom door has remained closed in our home. The first week we were in our home my wonderful father in law stayed with us and I will admit that I had other family members make his bed ready for him in Jackson’s room. The truth of the matter is that I haven’t stepped foot in his room since I found out about his diagnosis. As soon as my father in law left, the door was quickly closed again.

Starting Monday (June 6th) of this week the Lord began to ask me to “open the door.” All week I pushed down His words and went on with my week. Every day I felt him pulling me toward Jackson’s room and yet I just couldn’t respond. I didn’t even tell my husband about it because I knew he would open it (oh how I wish I had his heart of obedience.) Finally Friday rolled around and we had great friends spend the night with us and we needed to get their bed ready for them. This time there was no one else to make the bed for me so I was forced to go into the room.

As I opened the door I felt pain, gut wrenching pain. This is Jackson’s room. It always will be whether I ever get to bring him home. Being faced with that reality in a very tangible way is the reason I never wanted to step foot in it. “God, what if he never sees his room. What if I never rock my baby to sleep in this room?” Even after they left on Saturday I went back and closed the door. It wasn’t until this morning (Sunday) that God woke me up at 4:30 and told me to” get out of bed and open the door.” I laid in bed until 6 fighting him and then finally gave up. I can be quite stubborn when I want to be.

So here I am writing in Jackson’s room. I look around and all I see is broken dreams. God quickly reminds me that this is all part of His perfect plan. He spoke to me, “Get on your knees before me and fight for your son.” I tend to be practical in my point of views and so naturally I think the best way to fight for my son is through researching, scheduling, and targeting key doctors. These things are all extremely important as his care requires the utmost attention to detail. Those are all things I can do and God has gifted me to do. But who is praying??

The greatest battle is right here in this room. Will I choose to believe? Will I choose to respond? Will I choose to be obedient at whatever cost? So here I am tears rolling down my face as I type, Jackson kicking away inside me, and the battle cry being sounded. “This is where it all gets done; Four little pewter gray walls, a broken heart, and a mighty God.” This is where science ends and faith begins.