2.05.2017

Transitioning into a new normal

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I have been terrible about blogging consistently for the past year, but I think you all understand why. This post is to share my experience with childhood cancer, transitioning into a life of seclusion, and trying to somewhat come out of that seclusion back into the "real world."

If you follow me on Facebook, I posted our story on the one year anniversary of Luke's diagnosis, but here it is again, since I know many of you may not have been able to see it:

"Let me take you back to the day Luke was diagnosed. Luke had been acting off and had about 10 bruises all over in not normal places, so I took off work and made a doctors appt and his baby-sitter (Yaya) Janna went with me because she knew I was anxious. Stephen was coaching a basketball game in Orlando, because he didn't think it was going to a big deal, just a visit to the pediatrician. So, Yaya and I went to his appt and she said he probably just has anemia, and gave me an order to go get a full blood panel done, and would get results back in a week or so, and that she would call us. I did NOT like that answer, and knew I couldn't wait that long. So Yaya said since we had good insurance to just take him to the ER and have them do a quick blood draw and get peace of mind then. SO glad we did. We took him to MRMC Children's ER, and this picture is in the room waiting for the blood results. My mom (Stephanie) came and sat with us since she was off work, and she knew the attending ER doctor. We had a different lady doctor who was seeing us, and she was very sweet. I remember the very second both Doctors and the nurse came in and sat down on the floor by my mom, it was bad. My heart sank. The doctors said it was leukemia, blood cancer and it was serious, and that they already called an ambulance to take us to Shands. They said regular white blood cell count is 4,000-7,000 and Luke's were 367,000. I will never forget the scream and crying that my mom and Janna yelled out in pure disbelief. I sat in that chair holding Luke, feeling numb and emotionless. The nurse asked if I was ok, because I was not crying or reacting. I just said, yes, I just already knew and had secretly prepared myself for this moment. I felt strong for a few minutes until I remembered Stephen had no idea that his son has cancer, and I had to call him and tell him. That was the worst phone call I've ever made in my life. I called him in the ambulance on the way, and the cry I heard broke my heart in a million pieces. I can't imagine the pain he felt being so far away. He didn't have a car since he drove the basketball team on the bus, so Mr. Deal drove an hour to get him and 2 hours to Gainesville. Then,I had to call and tell my Dad (Kenneth) and Shannon that their 18 mo. old grandson had cancer, hurt so much. Thankful that they came to comfort us immediately too. That night was a whirlwind of big words, that I had no idea what they meant. We were introduced to so many different doctors, signed tons of papers, and watched Luke get poked and prodded for the first time in his life. By far this day a year ago was the worst day in my life. We truly were walking through the valley of the shadow of death. We did not fear evil. God was and still guiding us with his rod and his staff and He comforts us. We learned how real God was this year. I don't wish this experience on anyone, but I do wish that everyone feels the presence of God like we have."

So, pretty much for the past year we have been in our home, the Ronald Mcdonald house, or the hospital. Let me take you back to the day before diagnosis. Stephen was the dean of students, teaching Bible & Spanish, coaching soccer & basketball, and teaching an adult Sunday School class. I was teaching all the high school math, helping in the nursery, selling Younique, and blogging. My husband & I were both singing in the choir, singing specials, and helping with teenage soul-winning. On January 22, 2016 ALL of that stopped. All of our busyness stopped dead in it's tracks. Not by our choice, but by God's choice. Can you imagine how hard it was to stop all that and just let all of our responsibilities be absorbed by our peers. (Probably a lot harder on our peers, thank you all!) All of our focus shifted into fighting for Luke's life. Before diagnosis, our lives revolved around serving others. I struggled so much in the beginning of treatment with feeling like I was not doing "enough" for God. Psh..who's kidding, I still do.

It was such a hard transition to move back home after living in the hospital and across the street from the hospital for almost 4 months. We had so much fear of Luke getting sick and us being an hour and a half away from the hospital. Now that we're ALMOST into maintenance chemo, (hopefully in next month or so) it's another transition. Transition back into somewhat of a normal life.

Trying to get back to normal life is the hardest struggle for me. Just leaving the house is such a hard task. I've created such a safe, clean environment in our home. Leaving it makes me short of breath. It's like I can literally see germs floating around and on people's hands. I try to smile and shake hands, and all I can think is, "Dear God, I hope they aren't sick, or haven't touched something or someone with germs." Most people don't know how I die inside when they touch my child with such a weak immune system. To someone normal, they just don't think that way. But, with a kid with cancer, a little germ can turn into a very serious problem. For the past year, my life has transformed from serving others, to serving Luke, and it's very hard to bring myself back into serving others again, when I'm still recovering from a year of hardships.

Some days, my greatest accomplishment is that I got out of bed. Some days I feel like super mom, cooking and cleaning, and getting dressed and all dolled up. Every day is a new battle. I'm thankful for my husband who has patience with me. He knows how hard this is on me. A social butterfly that has been couped up for a year, I've lost my social butterfly-ness. I will need time to be able to handle other people again. Especially people that don't understand what we've been through.

My husband is much better at this transition than me, since he has still worked and dealt with people on a daily basis throughout this year. I'm not used to being around people anymore. I find myself easily annoyed with people's complaints about unimportant things, because I know how "little" that really is the scheme of life. It's so hard to pretend like everything is back to normal when the fear of cancer and sickness haunt our daily life. It's so easy for people to say don't fear, when they've never faced their child having cancer.

Maintenance doesn't mean we're done with chemo, it just means we're going to the doctors once a month vs. once a week. We will still have to administer oral chemo daily, give antibiotics daily, and give a 5 day steroid pulse once a month. He will still get an infusion of chemo once a month, and a spinal tap with chemo every 3 months. Maintenance will last until June 18, 2019. So when I say transitioning back into a normal life...it still won't be normal. But, I'm trying to pretend like it is. ;)

So all of that to say...just have grace and mercy with those who are hurting or going through trials. Be strong for those who are weak. Pray for them. Encourage them. Most hurting people have a smile on their face, but I promise you, behind that smile is a lot of struggles. Treat others how you would want to be treated if you were in their shoes.

Thank you for the thousands of prayers, messages, and love you all have given my family. We are so grateful. ♥

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20 comments :

  1. Praying for continued healing of your precious boy!

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  2. I remember when my Mom had cancer and I was freaked out by germs, too. My grandma lived with us and washed every frequently touched surface with bleach water every single day. Bless her. Do any support groups have suggestions/ideas for you on how to deal with germs in public? I think it's totally normal that you're nervous about germs. I get it and so would anyone else that's gone through the same things you've gone through. :)

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  3. Hello Laurén, I came across one of your older style blog post on Pinterest and got reading more recent posts on your blog, your pregnancy announcement, which was so sweet and you look so happy on those photos, then I hit 2017 to see your latest post. I was saddened to hear that your beautiful son is being treated for leukaemia. You are very brave, and strong, and amazing. I do try to lead a life treating others as I would like to be treated, with respect and kindness. I live by that (Cinderella movie!) quote "have courage and be kind". I see it two ways: 1) you have to be courageous throughout life (to surmount obstacles) and be kind to others (as you would wish them to be kind to you), and 2) at times, you have to have courage (to be) and be kind to others because, sometimes, it is those most difficult others that we have to be kind to. Once, when I was a child, I read a note on a church's outside notice board that stuck with me forever - it was in Portuguese (where I originally come from, before moving to the UK where I have lived most of my life) and said something along the lines of: "the kindest word, is the unkind word unspoken." I am not perfect, believe me. I worry and stress about little things all the time. I am a teacher in nursery (UK equivalent of US kindergarten) and primary school and I even worry about my classes and how to be the perfect teacher. My husband, rightly so, tells me that we shouldn't worry about little things and that one must not live to work. We should work to live (he means to be able to enjoy life). I am a mother of a beautiful girl and I love her dearly and I am overprotective of her. I am not perfect, like I said, and, at times, I lose my patience and temper but, ultimately, I try to live by those lines I wrote above: have courage and be kind. I wish you and your family the very best, and a speedy recovery for your beautiful boy. Take care.

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  4. Dear Lauren,
    I'm really sorry for how emotionally stressful the past year has been for you and your family. I pray that that God restores to what used to be your normal everyday life sooner than you expect. Luke's full recovery will surely be made permanent. Our God is a great God and his promises always comes to pass. Your faith has really been admirable and encouraging, please hold on to the faith. God bless you

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  5. Dear Lauren,
    I'm really sorry for how emotionally stressful the past year has been for you and your family. I pray that that God restores to what used to be your normal everyday life sooner than you expect. Luke's full recovery will surely be made permanent. Our God is a great God and his promises always comes to pass. Your faith has really been admirable and encouraging, please hold on to the faith. God bless you

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  6. So encouraged to read your story and see your perseverance and strength! You are an amazing mama and woman! Prayers for your little boy and your family. God bless.

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  7. I can understand how you feel about getting used to being around people again. I have gone through an experience of needing to acclimate to people again.
    Just before Christmas, my daughter was scheduled for a very serious eye surgery 2.5 hours away from where we live. The day before we were set to leave, I got a call that I have skin cancer. I am only 34. I have never been the kind of person to sit in the sun all day. This was a total shock. This started what became a nightmare. My daughter had another surgery again last month, so this makes two surgeries in two months. This time the surgery was at a research hospital again 2.5 hours away from our house. Since that time, we've had emergencies with eye pressures and too many long car trips to count. It has been almost too much to handle.
    I missed many, many weeks of church as my daughter recovered and as I recovered from my skin excisions. I felt many emotions during this time. I felt anxiety and I went through a time when I grieved. At first, I was eager to post Facebook updates and talk with people, but after awhile it became hard for me to be around people or talk with them. They would complain about small things, or give their opinions of where I should take my daughter for care. Even a family member made hurtful comments about how it wasn't necessary for my daughter to have to use such strong eye drops (eye drops that are being used to prevent blindness!).
    I have slowly begun to get back to church. Things have not been easy. It will take time for me to become used to people again. I keep reminding myself that this has taught me what kind of person to be. Will I be the person who is quick to criticize someone who is hurting? Will I be the person who is quick to send a card or take a meal? Will I offer my unwanted opinions? Will I pray for someone who is hurting?
    I think you've been a great mom to your son. Thank you for sharing your post. It was an encouragement to me.

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  8. I am so sorry to hear of your struggle. With God on our side ALL things are possible. I will pray for you and your family.

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  9. Dear Lauren,

    When my first daughter was born I went from full time work outside the home to stay at home mom and struggling with PPD and a huge transition I struggled a lot. Then when she was three months old she got a fever that went from 99 to 104 in three hours. We rushed to the emergency room and were admitted to the hospital and after I don't know how many tests we found out she had a tumor on her kidney. Early on in this journey we were crying and praying for her (we had tried for years to have a baby and now three months later we were in danger of losing her) during those desperate prayers God clearly spoke to our hearts that this may be a long journey but He would not take her yet. The next months brought tests and surgery and in the end she did indeed heal and is now a perfectly healthy almost 10 year old.

    Anyway, I say all this to share with you what the Lord showed me through this time. So often I would focus on all the business of life. And it was not a bad thing to be busy and serving at work, in the church and the community. But God reminded me during that time that focusing on my family during that season still serving the church. We are called to preach the gospel AND make disciples and what greater opportunity is there but with those we know and love most, our family. I know how incredibly lonely it can be. Having only babies and toddlers is and incredibly lonely season for SAHM. Throw in illness and it is incredibly difficult. You are doing a good work serving the "church" in your home; loving, discipling and caring for the physical needs for your sweet baby boy. You were not removed from ministry, but by God's perfect will you were transitioned to a more focused ministry for your good and His glory.

    I am praying for you! And I just want to encourage you that it is a season, and from someone on the other side of it, believe me that you will look back on these hard moments and cherish them more deeply then any other season in life.

    Praying for Lukes continued healing, and your own transitions to be seamless.

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  10. You're so brave to post your fears, you and your family have been and are still going through such a difficult journey. I hope that your son continues to progress as he works through his treatment, and that you are able to adjust to this new normal. I can so relate to your fear of germs, I've had three premature babies, and sadly lost our second baby to chronic lung disease. So germs are a huge issue to me, and I don't leave the house unless armed with anti bac gel! A little cold worries me so much. It's hard to explain to people who haven't been through the heartache of watching your child fighting for their life. I will pray for you and your son. Thank you for sharing this post, your feelings and fears are normal and so understandable under the circumstances.

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