Thankfulness

The Presidential Election was November 8th, 2016 and the winner was Donald Trump. Regardless of how you feel one way or another I am just thankful I don't have facebook anymore!

People have very strong opinions. Period. That is all. I promise that is all I will say about the Presidential Campaign.

During the election Mike and I started a campaign with "Go Fund Me" for Louisa's medical bills and our upcoming stay at Cincinnati Children's Hospital for her surgery. There are two reasons we decided to do this; 1) Louisa's medical needs have exceeded what we had thought already. 2) I have no more vacation/sick time with my employer and may need to take some unpaid time off.

We started the "Go Fund Me" on Monday November 7th and by Saturday November 12th we had WELL exceeded our goal of $5,000. I am brought to tears when I see who gave. Some of our previous Young Life kids and their families gave. Some of my dearest friends gave. Some gave that we don't even know. If you are reading this and you gave please know that I cannot find the right words to say to express how deeply this has impacted both Mike and myself. We were both floored by the support of our extended 'family'.

Recently I was thinking about the 'Go Fund Me' as well as running the "To Do" list for her heart surgery in my head while feeding Louisa and I was struck with fear. I know in my heart this surgery will be life changing for our family, but it doesn't make the fear of it all any easier. I held my little one close and rocked as tears rolled down my face and landed on her tiny little head. It feels scary. I want to spend every second with her because I am scared. I want to take her pain away so badly. I can't help but be frustrated at times that we are even going through all of this. Sometimes I want to scream and say, "I shouldn't have to make this decision!" "I shouldn't have to buy a box of 100 syringes so that I can feed my baby!" "I shouldn't have to cry after an hour of trying to console my unconsolable little girl." I feel guilty when I lose patience. I feel wrong when I am tired. But all of these things are true. I am tired. I am scared. I am ready for her to feel better. I have cried many nights when I cannot console her and she won't stop screaming because I want so badly to take away her pain. If I could I would remove every ounce of pain from her and put it on myself. It is then I find myself at the foot of the cross. I am reminded of the beautiful story of redemption and how Jesus took all of my and Louisa's pain on himself to die for us.

The past several weeks I have felt a variety of unexplainable feelings; fear, loneliness, failure, joy, hope, and excitement. On Dec. 21 I will get to wake up and (God willing) my daughter's heart will be healed. I get to wake up and we will be on a road to recovery. I get to wake up to a different baby. I can't help but feel guilty because I know not every parent gets this gift. The gift of healing, of hope. Often parents don't even have an option. We have an option. We have a road. I am crying now just thinking of the parents that have to watch their children suffer. I am so sorry. I don't know what to say. My heart hurts for you. Please forgive me for complaining about the short 3 months I have watched my child suffer. I wish, with everything inside of me, that I could fix it.

Someday I will look back at these past 3 months and think.. Wow, how did we survive?
This season of life has been hard on Louisa, as well as, on Mike and me but it is a season. We will wake up and this will be behind us. A part of me never wants to forget this season. I never want to take for granted having a healthy child. I want to remember this feeling so that one day I can be a support for another family experiencing difficulty. I don't want to take for granted what the Lord is doing in my heart during this season. I have been so weak and fragile but so dependent on the Lord and His strength. I am far from perfect, we have bad days, not just Lousia but me as well. It is then that I feel like Job's wife, angry at the Lord. I am not perfect nor do I want to be perfect. I just want to try and be what God is calling me to be and do the best I can.

A Father's letter to his little girl.

Dear Louisa,

I have been meaning to write to you little one. Ever since I learned about you, even while you were still in your mommy’s tummy! I have had so many thoughts and feelings about you. So many thoughts, at times it was easier to ignore them. In 3 weeks, you will be four months old! It feels like so much has happened so very quickly.

I need you to know that daddy loves you very much. But daddy is broken little one, just like your little heart is broken. Except daddy’s broken is different than yours. Daddy is afraid, daddy is nervous about being a daddy to such a special little wonderful girl. Louisa, I hope that someday you can forgive me for being so scared, and for trusting God so little. You can’t even speak yet, and God has used you to speak great truths to Daddy.

Little girl, I found out yesterday that you are going to be having a surgery soon. In 7 weeks, doctors are going to fix your little broken heart. When I found out, I was so afraid! But then I felt something, maybe for the first time. I felt pure joy about you. I was not afraid, I was excited for you and your future. I didn't see limitations for the first time, I saw a gift. You are my little gift Louisa! Then friends, and families, and even strangers started to support your mommy and daddy, but really, they were supporting you little one! They prayed for us, and they gave us money to help fix your heart, and It reminded me that our God is a big God, and a God that cares deeply about all his children. I am so very excited to teach you about our God one day little girl. God has taught me that I do not need to be afraid for you anymore. I do not need to fear what your future may hold. I do not need to feel sorry for you, or for myself. God is in control.

Thank you, precious baby, for teaching me. Daddy loves you so much, and is going to love you and support you and help you to reach your dreams. You are loved little warrior, and you will do great things for Daddy and God’s kingdom. You already have. 

Love of others

Ever since Mike and I were married people have begged us to get pregnant. Working in a High School ministry every one of my girls would tease and plead for us to have a baby. They would chat up about how beautiful they would be and how fun we would be as parents. When we found out Louisa would have Down syndrome a small part of me was scared how our friends would treat us and her.

I know it is silly but I was worried they would be scared to interact with us and with her. I rarely told people because I was afraid they wouldn't know how to talk to us anymore and would slowly distance themselves from us. I could not have been more wrong. Our friends (and their parents.. ha) love on her hard. Our friends just constantly ask about her and are smitten by her. It is a blessing I cannot even describe. We have had friends come help us put her feeding tube in after she has yanked it out and patiently fed her when she was at her worst.
They ask us hard questions about how we are doing and pick us back up after we have had a hard day. Truthfully, we probably don't reach out enough. I have gotten many emails from Christian woman that will write out their prayers and people asking how they can pray. I know it seems so small to them but it is a huge blessing to us. Mike's BSF Men's leadership group took the morning last Saturday and just prayed over our family. I am constantly blown away by support of the community around us. I don't feel like I deserve it but that is God's character shining through His people. Thank you Lord!
People have already gone above and beyond to help our family. We are very blessed by the community the Lord has given us. I truthfully think of our friends as our family because they mean so much to us.

When we found out about Louisa's heart condition a co-worker/friend encouraged me to start a gofundme page. I have been reluctant to do so because it felt strange asking people to help us out financially. Mike and I have tried our best to be responsible with our finances and even though we make mature decisions we were never expecting to have a sick baby. It is actually pretty hilarious now looking back. Mike and I both find much comfort in planning things out, however, things rarely go as we plan. Our journey has been unique but because of our crazy path we have met some pretty amazing people along the way.
Our 'go fund me' page is:
https://www.gofundme.com/mending-louisas-heart
Please do not give out of obligation. Truthfully we need prayer much more than we need money.
Our prayer requests are:
-Louisa would remain healthy for the next 6 weeks
-Louisa would recover quickly and we be able to spend Christmas at home
-Mike and I would have an indescribable peace as we approach her surgery

No one said this would be easy

The glimpse of light

Just when I start to feel the darkness of life overcome me the Lord gives me a glimpse of His mercy and truth. Louisa has started smiling. She knows me and she knows Mike. This picture melts my heart to tears every time I look at it. I want to hold onto this feeling of her smiling for the first time. It is as if God is promising us a bit of relief.  

Louisa has been gaining weight and we couldn't be happier. She is a whopping 9 lbs 15 oz and it is obvious. She is not taking any feeding orally right now but I am trying to let that go and focus on the fact that she is gaining weight and we are one step closer to her surgery. 

These past 3 weeks have been some of the hardest weeks Mike and I have had to face. After we left the UK Children's Hospital our neighbor's 7 week old little girl died of SIDS. It was absolutely heartbreaking. We ached for her and still do. My heart felt so heavy as I hold my precious gift. Ebony came over one night and just sat and held Louisa and cried and we cried and begged God to be near her. As I watched this hurting momma hold my baby I wanted to take all of her pain away.  A week later Ebony brought some of Eden's clothes over to us for Louisa. I couldn't even open the box. I just stared at the box of pain and short lived memories. My heart hurt so bad for them. The next day I went through the clothes and sobbed. I sat staring at my baby weeping. I was reminded of when the Doctor told us Louisa would have Down syndrome. I remembered the ugly feelings that came into our hearts during our time of grieving. I remembered the Doctor asking Mike if we wanted to terminate this baby. I sobbed and sobbed. I felt guilty for not seeing the Gift that Louisa is today. 

A couple days after Eden passed away, one of my colleagues died from a long battle with cancer. I was so sad because our profession would not be the same without Tom. Tom loved the Lord and was such a joy to be near. We went to the funeral and grieved with coworkers as we said good-bye to a legend. 

So things were already pretty rough and then the following week I found out that I may lose my job. 

For six years I have been trying and failing to pass the National Certification Exam for Interpreters called the NIC. Before you get all judge'ie, that I should just accept this fate and move onto a new career, the pass rate is 19.4%. I have struggled to understand why I haven't been able to pass this test when my colleagues and coworkers feel strongly that I should continue to pursue this career. I have questioned myself and my purpose in life more times then I can count. I have cried and ached over this test. I was under the impression that once the NIC Performance Exam was accessible and I would be able to take the test again I would have 5 months to take it. Unfortunately, I was very wrong. Two weeks ago I found out that I have until December 17th, 2016 to take this test. Not only is it time sensitive but my 3-4 month old little girl is going to have open-heart surgery during this period of time. 

To say that I have been feeling overwhelmed in a massive understatement. I feel like I am treading water and people keep holding onto my shoulders and pushing me under. My legs are getting tired. My head is almost completely submerged under water. I can only muster up enough strength to kick hard once to lift my mouth above the water level to breath. I sink deeper and deeper as I lose stamina. 

I have felt broken in the past. I have felt scared. I have felt overwhelmed. However, I have never felt so supported yet so alone. I feel like I am invisible. I have had my times of wrestling with the Lord but this time has felt different. It isn't that I have turned my back on the Lord but I have forgotten that He is good. I convinced myself the darkness is comfortable. I am too tired and weak to wrestle. I am just living, which is more frightening to me than being angry. 

I am ready not just for this season of darkness to pass but to understand what the Lord is teaching me. I don't want to go through all of this and be blind to His movement in our lives. He has taken me to the edge of the cliff before where it feels like everything is impossible and asked me to jump into His arms. The next two months feel impossible but I am too weak to jump. Then Louisa smiles and Mike holds me tight and I am reminded that the Lord has already been carrying me. I don't have to jump, I just have to hold tight while I am carried on His back. This is the glimpse of God's grace. God never promised me my life would be easier when I accepted Jesus into my heart. God did promise He would never leave or abandon me and that is the promise I need to remember when this gets too hard.