Preemie Mamas, You Aren't Alone

This morning on Facebook I came across an article called
When Birthdays bring Fear: Birth Trauma and PTSD. I shared this article on my feed because lately there have been several women in my life who have shared with me that they too, relate to this experience. For the longest time I thought it was just me and I felt very alone in this. After reading the article and hearing feedback from friends who also identify with it, I have decided to share a journal entry I wrote last summer, right before the twins' birthday. I share this in hopes that others will realize they aren't alone, that this is a real thing and it's not something silly you can just "get over."

Saturday, July 11, 2015

On Tuesday our sweet miracle babies will be 11 years old. I don’t know where the time has gone. As the day approaches each year I have so many mixed emotions. Of course I am looking forward to celebrating the lives of these two incredible little people. They are indeed miracles and have grown from the tiny 3 pounders that seemed so fragile into smart, strong, fun people that I truly enjoy being around. I am so privileged that God chose me to be their mommy. Every year Wes and I give them a huge birthday extravaganza. This year they don’t want that. They want a simple party at home with family. That’s it.

The other part of their birthday isn’t something I like to talk about a lot. The circumstances surrounding their birth were traumatic  for Wes and me. Let’s be honest…the big birthday celebration is more for us than it is for them. It’s a distraction from all of the grief and sad memories associated with the trauma of their birth. I thought that through the years the flashbacks, anxiety and nightmares would go away. It’s been 11 years and they haven’t. What I have learned is that I have PTSD. It has taken me a while to come to terms with this, to admit it to myself and it is extremely difficult for me to tell other people about it. I’m not sure why I find it so difficult to talk about. Perhaps I feel like using a term like PTSD makes me sound overly dramatic or perhaps because it feels like there is something wrong with me…like I’m damaged. What I have come to understand is that their birth was traumatic. I almost died, they could have died, and the weeks and months after they were born we were literally fighting for our lives. This isn’t something I can just “get over.” Well-meaning people have said to me, “But everyone is alright now. You are all 3 healthy and you should think about how incredibly blessed you are and how good God is.” Yes, perhaps I should concentrate on the goodness of God and how He blessed our family. In fact, I do thank Him every single day for how He has worked in our lives and for the privilege of raising Sarah Grace and Jonah.

 Here’s the thing I didn’t understand until recently...PTSD is the result of trauma and we have wounds that haven’t healed. So often I think of PTSD as associated with soldiers coming back from battle, but we did fight a very real battle. A life and death battle. I don’t always know what is going to trigger a flashback. I can be walking along minding my own business and happy as I can be and then suddenly I smell something that takes me back to the hospital and I am there all over again, reliving the trauma all over again. Sometimes it is the sight of adorable baby shoes, a maternity top on a mannequin in a store, it comes right up and punches me in the gut and I’m stunned, trying to recover. It’s a dark place to go and I don’t want to be there, but I can’t always avoid those sights, sounds, smells, memories because I don’t always know what is going to be a trigger. Yesterday I was home minding my own business when I started smelling this smell like the NICU. I hadn’t been anywhere near a hospital and I wasn’t cleaning with chemicals so I’m not sure where it came from, but I had to light a candle to try to smell something different so that I wouldn’t go into a full on flashback. I am learning strategies to deal with this and sometimes I can keep myself in the present.

I hope that someday I can look at their baby pictures and not feel panic as fresh as if it had just happened. I hope that someday I can eat at Chick-fil-a and not feel nauseous as I remember that I ate at the one in the lobby of the hospital almost every day when they were in the NICU. I hope that someday I can complete their baby books and photo albums and not have a panic attack just from looking at ultrasound and baby pictures. I do have a lot of mommy guilt that these kids don’t have completed baby books. I have faith that someday all of these things will happen. I am not there YET, but someday I will be.

These are the things I know to be true:

1.             I can’t do this alone. The Holy Spirit will empower me, strengthen me, walk this out with me every step of the way and on the days that I can’t walk on my own, He will uphold me.
2.     .       I need my network of family and friends to support me. They may not understand completely and that’s ok. I just need to know they will be there for me, hold me and encourage me on the days when I feel stuck.
3.     .      My children don’t remember any of the trauma surrounding their birth and I thank God for that. They aren’t affected by these circumstances except for what they have been told. They know that they were born early and were fragile and we were very afraid. They know they are miracles and that we are so thankful God gave them to us. They know they were very sick and God grew them up to be strong, smart, big kids. They know they are loved – by us and most especially by God and that He has a purpose for their lives.
4.             Healing for me isn’t going to come overnight. I am making progress and some days are better than others. I am learning to put our time in the NICU into perspective. My week in ICU and their month in the NICU were certainly scary and traumatic – HOWEVER – it’s really only a one month period of time in the span of 11 years. Yes, there were other scary times and health challenges I faced, but in terms of the birth of the babies, we are talking about one month and then a couple of months that followed as Wes and I were scared that something would happen after we brought them home. Anyway, that’s a whole lot of good days compared to the 30+ really scary ones.
5.             I am not alone in how I feel. For one thing, my very best friend, partner, advocate and true love lived this with me. We have both been changed by this experience. You know that talk you have with your spouse where you say “If anything happens to me I want for you to get married again?” Yeah, that one. We had that talk right after they told me my body was shutting down and they weren’t sure they could fix me - just before they wheeled me to ICU. If I close my eyes, I can instantly be transported back to that room, him holding my hands and sitting on the edge of my bed. I meant every word of it. My point is, you don’t go through something like this and not come out changed. We grew closer to God and each other in those moments and learned not to take one moment for granted. In some ways I think Wes had it worse than me because there were points in time that I was so sick that I didn’t realize how bad things were. It was during those days that he held it together for both of us, driving back and forth between Americus and Columbus to make sure the babies and I were looked after.
6.             I am much stronger today because of what I have been through. I had lived with such fear my entire life. I was afraid to die. In those moments in my hospital room, when the doctors told me that they weren’t sure of anything but that there was a chance I could die, I wasn’t afraid. The one time I should have been afraid, I knew I was safe in Jesus and either he would heal me or he would take me to live with him. Either way, it was all going to be OK.
7.             God uses every experience for His glory. I know that all things work together for good for them that love God who are called according to His purpose. Some days I can’t see what that good is, but I do trust that God knows and He wastes nothing.
8.             My thoughts and plans are not His thoughts and plans. I am coming to terms with this and I know that not only do I not get to choose Plans A, B, C…I don’t even get to know what those plans are until God is ready to reveal it to me and chances are, He isn’t going to show me the plan anyway. I only get to see the next step, then the next, then the next. I am becoming OK with this although the control freak in me still freaks out a little bit with fear of the unknown.

I guess that’s all for now. I could go on and on about what I have learned and what I know to be true. I just needed to get some of these thoughts out of my head and into some sort of journal so I can process them…or maybe not. Maybe I just need them out of my head and to leave them alone without processing them. I just need for them not to be so much at the forefront of my mind. The counselor is helping me to see that I have unrealistic expectations of myself when it comes to healing from all of this. I spent years thinking that if I relived it enough I would be desensitized to it and it would go away. Instead, I sunk deeper and deeper into a dark place that I didn’t know how to get out of. It’s going to take some time to figure out how to deal with this and what to do with all of it. In some ways, that dark place is comfortable because I know what that feels like. I no longer remember my life before that. It will happen though, and those moments of grief will be like one snapshot in an entire book of photographs. I am clinging to that hope and praying that it happens sooner rather than later.

My Update from Mayo

It has been a long day...a long couple of days. I am glad to be home. I have had many people checking in on me today either through Facebook or text message. I have played this medical situation close to the vest because I wasn't sure what we were dealing with and it was a bit scary for me. Now that I am home, I will share what happened.

As I said in my last post, last fall routine labs came back with some abnormal levels. My liver counts were elevated and when my gastro doctor at Mayo repeated the tests two week later, they were even higher. This concerned him enough that he referred me on to a liver specialist. When I met with the liver specialist at the beginning of December he didn't seem too alarmed but wanted to follow up with more testing. He said that if he didn't get the results he was looking for and if my numbers didn't start going back toward normal he would perform a biopsy on my liver. I have talked to many people who say that the liver biopsy isn't that big of a deal but I was pretty freaked out about it. I went on Dec. 28 for a repeat of my labs and an MRI. The labs looked better than they had, although they still weren't normal. When the nurse called me on New Year's Eve to tell me that my MRI looked fine and the labs were better she said the doctor wasn't ready to cancel the biopsy just yet. He wanted to see what my labs would show when I went back up on Jan. 13.

That brings us to this morning. I went for my blood draw first thing this morning and expected for the doctor to give me an answer about the biopsy when I saw him at 10:30. He didn't do that. Instead he said that my blood levels were better and heading toward normal but that he still had concerns and he wanted one more test to determine whether or not I would need the biopsy. All morning I felt like it was bait and switch. I would reach one milestone and then he would set a new criteria. I appreciated his caution but at the same time, I was ready to be done with all of this and I wasn't liking what I was hearing. Finally, the call came late this afternoon that the biopsy was NOT needed and that Hubby and I were free to leave Jacksonville and return home. Music to my ears!

We don't know why my liver counts were elevated. He said it could have been a virus that they didn't identify, could have been a reaction to some medication (don't know what that would have been though), could have been any number of things. The important thing is that it isn't what he thought it could have been, among which included an autoimmune liver disease.

Tonight I am thanking God for His healing. I am thankful that I get to sleep in my own bed and that I don't have to have any more tests for 6 months. I am thankful for my Hubby who goes with me and puts up with my whining, grumping at him and need for constant reassurance through the process. And I am thankful for family and friends who check in on me and support me with prayers and messages of caring and love. It's been a roller coaster of a day, but at the end of it all, I am feeling thankful.

Trusting God with the Big Things

The week after Christmas I had what seemed like a bad week. While staying at a hotel, I was getting out of the shower and the shower door came off the track and landed on my big toe. It hurt so much and my toe immediately turned black. I hobbled to the bed and cried while Hubby got me some ice to put on my toe. I cried and prayed and cried and prayed. I'm not sure that it broke my toe but I know I'm going to lose the toenail and it hurt to walk on it for about 10 days.

A few days later I was in the grocery store and had my cell phone in my back pocket. I always check my back pockets before I go to the restroom but on this night I didn't. Wouldn't you know that my phone fell out of my back pocket and right into the toilet?! I immediately grabbed it out of the water and dried it off the best I could, but the phone wouldn't work. I was so mad at myself for making such a careless and expensive mistake! When I got home I put the phone in a baggie of rice and prayed that the phone would dry out and work again. In my impatience, each time I took the phone out of the rice and tried to power it on or plug it in, I prayed that it would work. Three days later, my phone finally powered on. Thank you Jesus!!

The night that my phone started working I had strange dreams. I remember dreaming that my phone kept falling in the ocean and each time I would reach for it, the waves would carry it out a little further from my grasp. In the midst of trying to get my phone, God spoke to me. While His voice wasn't audible, there was no mistake that He was speaking to me. He said, "Rachael, you bring all of these little things to me. You prayed over your hurt toe, your cell phone, you talk to me all of the time and ask me to handle these little things in your life. Why don't you trust me with the big stuff? When are you going to trust me to handle the important things in your life?" I was jolted awake, but wasn't sure what woke me up.

I didn't realize what it was until later that morning while we were sitting in worship and God's words reverberated through my mind and heart. "Trust me with the big stuff." I knew at once what He was talking about. It is true, I pray about a million little things every day all through the day. These things don't seem little to me at the time but I'm sure they qualify as "first world problems, " my cell phone for instance. I have also been know to pray for up close parking spaces when it is raining, that there won't be a big line at Starbucks when I want to quickly stop for a drink, that traffic isn't too heavy, etc. Don't get me wrong, I pray about many important things too. When I tell you that I talk to God all day every day, I do. I pray for people I know, people I don't know, my kids, people who are sick or struggling, our leaders...I pray for all kinds of things. I also know that God answers prayers.

This is the thing that convicts me: I don't always claim the answers to my big prayers. I know God listens to me. I know He heals and yes, still performs miracles in everyday people. I know He CAN. What I don't know is if He WILL. About 8 years ago, before my first Crohn's surgery, I prayed for healing. I claimed that healing and I knew that God had not only heard my prayers, I just knew He was going to answer those prayers in a specific way. Well God did answer my prayers but not in the way or the time that I wanted them answered and so the process was much longer and much more painful than I thought it should be. (You can read about that HERE) I hadn't realized it until lately, but this had a huge impact on my prayer life and my ability to trust God to answer the big prayers. I've been so afraid to ask Him for big things since that time. I don't know why God works things out the way He does. I do know that if God had answered my prayers my way I wouldn't have endured as much hurt, but I'm also sure that I would not have seen the miracle in the same way.

In the last 5 months I have been back and forth to Mayo Clinic for more tests. Some of my levels were elevated when I had routine labs taken. This has led to more tests and I'm going back for more in the next two days. I'll be honest, I'm tired of the tests, tired of being a human pin cushion. I'm tired of not knowing and I'm a bit anxious about it. I'm not doing this trust thing perfectly, but I would like to think that I am making progress. It's easy for me to look back on all that God has done in my life and to identify where He was each step of the way. It's harder to look forward, not knowing the outcome and to claim victory. What I do know is that God is there is the big and the little and He cares about all of it. As I start to get anxious with the what-ifs, I keep replaying God's words to me again in my mind, "Trust me with the big things, Rachael."