This is Dr. Boop. The man God chose to save my daughter's life.
Wow. Where do I start? It's been such a long time since I've written or updated on Lucy. I am not even sure where to begin. First, let me update on Lucy. At the beginning of February I wrote about Lucy having tubes put into her ears. She was having a lot of hearing problems and we thought that this was going to be the answer. Immediately when she woke up from surgery she could hear-almost perfectly. We were amazed and ecstatic. However, within three days she was back in her hearing aids.
Fast forward a month and a few doctor visits later and we are fairly sure that the hearing loss she is experiencing is going to be permanent. High dose radiation left irreversible damage that she will just have to live with forever. I am extremely thankful for hearing aids and with them she can hear almost perfectly. While I am thankful for the aids I am still having a hard time with this one. Honestly, its just one more reminder that she is different. One more reminder that cancer tried to kill her.
To be perfectly frank, I'm struggling with a lot right now. Erik says its because I have been studying the Bible and the devil is working on me. I think he's right, but I also think it's a little more than that. I don't say this lightly, but I feel as if I have PTSD. I'd love to know how many other cancer moms feel this way.
I miss the perfectly healthy child that I took for granted for 5 years. I leave sporting events angry that thousands of children can run and play. A part of me dies every time I watch Lucy struggle through a social encounter. My heart literally aches as I see her fighting through the challenges that learning poses every single day. Yesterday as we left the soccer field I cried off and on for the rest of the day.
Most day I walk around in a fog, hardly remembering a moment of the day before. For example, I had to call the school the other day to find out why I was charged an amount on my account. Apparently it was for Jack's preschool registration for next year. I was mortified when she told me that I had turned in his application the week before. I don't even have a single memory of filling out the 6 page application.
So...yeah. I'm pretty much a hot mess right now. I think part of my PTSD involves this blog. For more than two years I poured my heart and soul onto these pages. This was my safe place--the place where my fears found words. Now, I can't even find the words to write. My brain stays so tired that I can hardly put a sentence together, much less write a fluent post. I can't even keep extended eye contact with people when we talk. Seriously, it's a real issue. I have a college degree in communications and have lost all ability to carry on conversations.
I know that God chose my family for this battle and He equipped us with all the tools for fighting that we needed during the battlet. I just wonder when the war ceases. Because right now it seems like every day is still a struggle. I didn't mean for this to end up as a pity-party but I needed to be honest.
Ella and Jack continue to thrive and I couldn't love them more. I am trying to respect Ella's privacy a little more as she is starting to become such a lovely young lady. We haven't really talked about it but I'm sure she's becoming a little more sensitive to my telling her business all over the internet. I will just say that she's just a ray of sunshine everyday and so full of life. She is making all A's and excelling in so many extra curricular things. She's got one of the lead roles in the church spring musical and she's playing club soccer.
Jack--woah. What can I say? This precious boy---he is everything I ever dreamed a little boy would be. He is wild, adventurous, passionate and super loving. I get a least 5 million kisses a day. I absolutely love this child.
Thanks for hanging with our family (and me). As I am finding out, Lucy's cancer diagnosis is something we all deal with every day. Some days are good. Some days are bad. Some days just suck. But we keep on moving and fighting. One day at a time.
Has anyone talked to you about depression? I've had bouts with anxiety and depression and it sounds very similar. It wouldn't hurt to mention this to your doctor. You must take care of yourself. I pray you will find a way to breathe deeper and find your way back.
ReplyDeleteI have battled with anxiety and mild depression for many, many years. Long before Lucy ever got sick. I took anti-depressants for years but found that they really just made me feel worse. I take anxiety meds when necessary. It's not something I brag about but I don't try to hide it. I hope that by sharing my experiences people will understand that depression and anxiety are very common. It's something I work through every day.
DeleteIt sounds like you suppressed a lot of your feelings and emotions when you were caring for Lucy and didn't know if she was going to make it or not, which is totally understandable. Maybe these suppressed feelings are just making their way to the surface, and since you are able to focus on you a little more and life has almost returned to normal, you are noticing them now, but don't exactly know how to deal with it. To all of that I say- give yourself a break. You are human, you are just as human as everyone else, and you are one person, who almost lost her child. It's perfectly normal and acceptable for moms of children who didn't fight for their life as well as moms of kids who did to sometimes have to slow down and take things one minute at a time, instead of one day. Hang in there!
ReplyDeleteThank you Robbie. I appreciate your kind words.
DeleteYou never cease to amaze me!! God picked the right momma for that precious Lucy! God bless you all!!
ReplyDeleteKate, I don't know what it is like to be a parent of a child with cancer but having battled stage three breast cancer, double mastectomy and now a GIST, I get what you are saying. I can relate to your post so much. I haven't sent a group email in over three months, haven't posted on my blog for almost a year and hate what cancer has done to my life. I lost my child in the adoption process and then my dad suddenly last summer to suspected liver cancer. I think that whether you call it PTSD or depression it is common and completely reasonable. Try to find something positive in each day, I know I struggle with this but you have your faith to help you. Hang in there, please try to keep posting as I love following your family's life. Lucy looks so good!
ReplyDeleteDear Mama,
ReplyDeleteI want to tell you as a peds oncology nurse (28 years) that PTSD post treatment is real. The battle wages on because she is still fighting. It is so easy for everyone else to assume that life is moving along normally because she isn;t getting actually chemo or a radiation. This is a very common misconception for folks who have not walked your road. Living with the stress of not knowing what tomorrow brings is a fatigue that only those who live it can understand. And while it is true and wonderful and miraculous that Lucy is still her fighting, it does not mean that you do not grieve for all she has endured and lost and continues to fight! I genuinely hope and I most certainly pray for this, that you allow your self a little respite every now and again. Give yourself a break. You and Eric have endured more than seems humanly possible.
My prayers for your Lucy, Ella and Jack...your whole family continue.
P.S. I genuinlely respect that you are considering Ella and what to post as she grows older. You never expected this blog to be more that a log of your life for family and friends. It is wonderful and amazing that it has grown to what it is, but there is a balance that is hard to find!!! God bless you!!!
As a former cancer patient, my Dr. described it exactly as PTSD. I was concerned because a year or so after completing treatment I was having more anxiety then during my actual diagnosis and treatment! He explained that for many patients we are so active in fighting the cancer and having some form of control that it's not until later, when we feel as if we're just bidding time and dealing with the "permanent" side effects that our mind starts to actually process all we have been through. I pray for your peace in this journey.
ReplyDeleteI was going to say the same thing! I don't have any children so obviously I can't say anything to watching your child fight cancer, but I was diagnosed last year with breast cancer (ironically, while trying to have a baby). I know that my experience pales in comparison to yours, Kate, but I also know how it feels to loathe being around happy people, to not understand why I can't be healthy or why I can't give my husband a child. My oncologist required I see a therapist after a breakdown in her office and the therapist has really, really helped! After treatment has definitely been worse than during, emotionally.
Delete10 YRS ago our now 17 YR old had leukemia and I suffered from PTSD as well from the shock and trauma of it all and from living thru that nightmare. He almost died a few times and it was terrifying. It lasted about a YR or so and just went away over time. I have also had it 3 other times in my life due to other traumatic events, incl. a house fire and other personal traumas but it does heal, you just need time, but Prozac helped,too.I can sympathize with you! ♥
ReplyDeletePTSD is exactly how I would describe some of the feelings I have been having as we near the end of my on Scott's treatments! Interesting that I came across your blog, we made a similar post about PTSD on our blog last week. http://mortalshowersbringeternalflowers.com/beautiful-hauntings/ You are not alone, and you are NOT crazy. It was a tough road fithing cancer. And it is hard to sort out the feelings that become more powerful after facing the possible death of a child. Sometimes my tears are tears of sadness and confusion, remembering all we have been through. Sometimes they are just tears of gratitude. We made it!! and I am forever changed. I will always see life a little differently, feel a little more poignantly, and love a little more deeply. Those are all beautiful gift from heaven but they sometimes hurt a little bit.
ReplyDeleteKate, I believe you are having classic PTSD. I needed to see this post and it's perfect timing for me. I would like to share a bit of my PTSD experience and what has helped me. I had a pretty tragic/rough childhood. A few weeks ago I had a BIG trigger occur and for the first time I understand about PTSD. It's a horrible beast. I believe as Erik said you have been in the word and Satan is working on you. I too was in an intense bible study to Break Free from many traumas. And BAM the PTSD epsidoe. I am counseling and working with EMDR treatment. It involves deep breathing, going to a place that is safe and the therapist talking you through the fears and anxiety to tame down the PTSD. It is helping as well as some medications for depression and anxiety. My heart breaks for you and I will be praying for you. It's hard to believe it will pass, but in time I believe it will become more manageable.
ReplyDeleteKate, you and Erik are a great team. GOD definetly choose you two to be Lucy's parents. You are such an inspiration to so many.
Prayers to you and your family.
Kristi WA State
I can't help but wonder why God allows us to fight such battles, one day we will know. I am so sorry and wish I could take this all away from your precious family. I found our healthy, thriving infant son deceased one morning. No reason but SIDS, perfectly healthy baby. I live with that morning every day. I wish I knew how to overcome PTSD.
ReplyDeleteWe're all so broken down here, but one day we will be whole again through Christ. I have come to truly love and care for your beautiful family. I will keep y'all in my thoughts and prayers. Always.
Kelley
Best wishes for a peaceful mind. I can just imagine the stress you're under.
ReplyDeleteAh, Kate, thanks for the honesty. Praying for you!
ReplyDeleteKate, thank you for your honesty. I think you are spot on. What's more is that I believe when we bring the darkness in our lives into the LIGHT, satan has no choice but to flee. You've shared it, you most certainly aren't crazy, and now it's brought into the light of God's truth. You go girl! (What I really want to say right now is satan can suck it! But, I realize that would probably come across rather crass. I apologize.) 😉
ReplyDeleteYou have to have time to grieve. While we are going through something traumatic you are in survival mode. It takes years later, sometimes to allow yourself the time to grieve. You have to grieve the great life we have picked out for our kids, you have to grieve when a child isn't perfectly healthy and grieve how hard it is to live your life with the worry, the Dr. visits, the extra sickness, the inconvenience.. etc, etc. I think as Christians we always feel guilty when we are depressed about situations, and others make you feel guilty. It is ok to be sad and grieve, allow yourself the time- no matter how long it takes. Don't listen to whoever is trying to make you feel guilty(even if its yourself). When you are done- you will decide to move forward- draw a line in the sand and decide to fight where you are. Share your struggles with people you trust- maybe you could find a class about grieving. It does help to share it. I am glad you are being honest. God will bless you- and your life will be better than ever(even though it is flawed and harder).
ReplyDeleteHi Kate,
ReplyDeleteI too wonder if you have had enough grief time. Your family went through a lot, I'm sure you need time to heal.
Continuing to cover Lucy and your family in prayer.
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Hi there,
ReplyDeleteI have not traveled your road, but my friend's beautiful boy battled cancer at age 4. His daddy described the oncology floor at Texas Children's as "like being in Vietnam." He told me after a while, you start to know what the codes mean and when they close all the doors and announce a certain code, it means a child has passed away. He also told me that no matter how cheerful they try to make it there, he could hear screaming through walls and all the suffering witnessed not only of his child, but others all around. It is very much a PTSD experience. You do whatever you have to to keep your child alive, but once the chemo and radiation are over, you are left to wonder and think about all the choices that were made. Its just so incredibly difficult. That same little boy's step dad got cancer and his mother told me that she was just glad he was an adult and could make treatment choices for himself. They are both survivors of cancer and recovering, but I see the aftermath when I am with them. Nothing is taken for granted, but there is also a lot of fear. Supplements, healing crystals, dietary changes, special shakes that have anti cancer fighting properties. They even moved homes because of all the bad memories associated with the old house where two people fought cancer. Cancer changes you. You have been where no one wants to be and no one thinks they can survive it. But y'all have. Sending you all best wishes and like others have said, don't be shy about using the term PTSD. I'm sure this is the case. How could it not be? Your family has been in battle. You are winning, but there is no defeat in seeking help for the things that have come up.
You are loved and prayed for Kate.
ReplyDeleteKate,
ReplyDeleteYou are carrying your heavy load with grace and faith. Much has been asked of you! AND YOU ARE DOING IT. You are mothering Ella, Lucy and Jack to honor Jesus...as well as being a wife, friend, daughter, sister, etc. Don't underestimate how hard NORMAL life is...yet you have been asked to give more. AND YOU ARE DOING IT. Please don't ever feel guilty for struggling or needing help or prayer. We all need help of one kind or another. I love your caption, "The man God chose to save my daughter's life." May we all help one another in any way we are able...and may you receive the love, healing and prayers others can give.
my dear kate after having read these wonderful comments there is not much for me to say only know I care very much patti a granny in canada
ReplyDeleteDear Kate, What you've described sounds normal to me for someone who's been through what you all have. I remember my own depression after I was finished with my own cancer treatment, and mine was EASY compared to Lucy's struggle. (mine was simple breast cancer, early stage) Your journey has been so difficult and stressful, and it doesn't end now, as you said.
ReplyDeleteI continue to pray for Lucy and your family every day, as I have done since her diagnosis (I forget how I stumbled across your blog, but I remember the very first surgery).
I have enjoyed following your blog for many years. When I started reading I was in school for Human Development and Family Studies with a child life concentration. Therefore, I enjoy being able to read a family's perspective in and out of the hospital life. I feel it helps me be able to better understand and help patients and families I encounter. Through my studies I read an article describing what you are feeling- PTSD in parents and children that battle cancer.
ReplyDeletehttp://www.sfgate.com/entertainment/article/PTSD-shows-up-in-parents-of-kids-with-cancer-2460433.php#src=fb
You already do many of the suggested coping techniques but I hope the article can offer you some validation and comfort in knowing you are not alone. I acknowledge your feelings and know that some moments and seasons are tougher than others but I am always so encouraged visiting your page reading about the progress, joy in the simple things and faith you maintain. Keep putting one foot in front of the other and caring for each family member including yourself
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