Over coming PTSD and medical related anxiety.

“But first seek his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” Matthew 6:33-34

I used to sleep with one eye open. We had a very long hard road when Lily was born and there was no end in sight. On her 5th day of life she was put on oxygen, we were told her lungs were underdeveloped even though she was full term. Immediately upon birth she had already been whisked off to the NICU and had been experiencing an extended stay in the hospital, with the newest development, her stay was extended. Sitting in the corner of that room holding her, there were alarms going off everywhere, a lot of the time. Sometimes it was her, sometimes it was other babies. They don’t call them alarms for no reason, when it is your child panic rises up within you. I felt as though my heart was going to jump out of my chest every time her alarm went off. All I could think was oh dear God, please tell me it isn’t something major.

Her oxygen saturation would drop out of no where and for no known reason. To tell you the truth, it didn’t even make sense that her lungs were underdeveloped either but we went along with the doctors as they seemed to know somewhat, what they were doing. Oh the alarms my friend… I’m holding my dear little one, trying to bond with her amidst all the noise and chaos and trying to allow my mommy instincts to kick in when; beep beep beep beep beep. Not a quiet beeping but a long terrifying one. It was awful.

Lily only spent 10 days in the NICU but she was set to go home on oxygen. I fought to get a pulse ox sent home with us, as they weren’t going to send one. We spent one night in the parent suite with her to do a test run. The nurses were just a short way down the hall from us. I laid in bed while she slept with one eye open. I was watching her oxygen saturation bobble between 98% and 87%, I knew her alarm would sound if she dropped to 85%. So here is where it began. I was waiting for her to dip that extra 2%. She had done it many times during waking hours, why not while asleep too? I was terrified to try and fall asleep and have that alarm wake me up. It was an awful sound. I couldn’t sleep. I didn’t know how to, it was as though I forgot. In a matter of a few days a little machine that was monitoring my daughter had slapped its terrifying handcuffs on me, I was subject to the machine now. In an effort to get some shut eye, when she woke for her next bottle and diaper, I zipped her into my favorite mommy hoodie, reclined in the rocking chair and closed my eyes. I slept for 15 minutes.

When we finally did take her home, the homecare medical team met us at our house and showed us how to use our new equipment. We had ample tanks of oxygen, plenty of canulas and plenty of line to stretch across the house. Oh yes and of course a pulse ox to alert us should her numbers take a dive. We were all set right? Ready for success! Wrong. I didn’t sleep. I couldn’t sleep. I watched those numbers for many nights, it became a game. Were they going to go up again or move down a percent? Finally I reached my cracking point, I broke emotionally from sleep deprivation. My husband and I made an agreement to take shifts. Oh my gosh, what a relief! He stayed up all night with her so I could sleep and I got up bright and early in the morning so he could go to bed. We finally figured out the sleep thing.

I had to start doing normal stuff again like leaving the house. Panic would set in. I wasn’t afraid to leave Lily with my husband, I was afraid to talk to people. I didn’t want to talk about what I had just been through. What else was I to talk about? If I saw anyone I knew, they would know I just had a baby and ask how the baby is doing. So there was that anxiety. The next one was far worse, going to stores. If I managed to not feel like I was going to vomit anymore and mustered up the courage the step over the threshold of the store, the first thing I was bombarded with was people noise and the beeping from the cash registers. Deep breaths as I moved through the aisles. I would hear a loud noise and jump, my heart rocketing up into my throat. I was so grieved that I was experiencing this, I beat myself up about it for quite sometime, having a pep talk like; hey, you are a healthy individual who is also very outgoing and social, what the heck is wrong with you!? I just couldn’t do it. My dear husband took over on grocery shopping for a while. I drew the line when I came home sobbing from the store one day. It wasn’t just PPD for me, it was all of the above. It was the death of the child we thought we were going to have. It was PTSD; it was anxiety, depression, grief, sleep deprivation… I could hardly eat!

I think I have painted you a clear enough picture, I hope. What did I do? I began to say no. I began to do it scared. I began to get back out there and try to socialize. I said no to the thoughts and feelings that accompanied all these diagnoses and reaffirmed who I am in Christ. One of my favorite scriptures that I clung to; “For God has not given us a spirit of fear, but of power and of love and of a sound mind.” 2 Timothy 1:7

I cannot take credit for the changes that were made within my mind. God did all the work but my part in it was handing it over to Him. I couldn’t do it. It was well above my ability to take good care of a sickly baby and take care of myself. I was so depressed and distraught, I didn’t cook for 6 months! If you know me, you know I spend a lot of time in the kitchen.

I reached a place in my journey where I realized how severely broken I was and I wanted change, I did not want to live like that anymore. I did not want to jump when I heard a loud sound. I did not want my heart to feel like it was going to beat right out of my chest. I needed to be calm first, for myself but also for Lily, children feed off of our energy. I didn’t want to be basket-case mom anymore. It was painful physically and I felt like it was killing me. So, I gave it to Papa and little by little He helped me through the alarms and the noise and talking to people again. He helped me get free.

Lily was cleared to get off oxygen at 6 months of age. I kept the pulse ox on her at night for a while just to be certain and eventually when i felt like it was time, placed it in the closet. That was a huge faith step for me. Little did we know we weren’t done with alarms. Lily has spent many nights in the hospital hooked up to all kinds of monitors. She came home on TPN (total IV nutrition) last summer before her g-j tube surgery. The pump on the TPN had an alarm. The pump for her gtube has an alarm. Now my husband and I have a phrase that we have shared with others on how we handle the alarms, we say— it’s not oxygen and we chuckle knowing we already tackled that one.

I know this is a long post but I also know someone needed to read this. I know there are folks out there suffering in the grips of PTSD; anxiety, medical trauma, social anxiety etc. There is a way out. I don’t know if you have a relationship with Papa God but He is an amazing Father that deeply cares about you and your mental health. He didn’t cause your trauma. I could have easily blamed Him for Lily’s condition, citing, that if He was such a loving God how could He ever allow something like this to happen to an innocent child? (or one of the many other atrocities in the world) I do know He didn’t cause it. We live in a broken world but as light bearers in this world we have the privilege and ability to bring light to dark circumstances. I have Christ within me and He is the light! He is the reason why I have any hope at all! Friend, I hope this blessed you. If you are struggling, please reach out to me or to someone else, there is help and His name is Jesus, I will happily tell you all about Him. God bless you all.

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The medical carousel

“Let food be thy medicine and medicine be thy food.” Hippocrates

When I became a mom again, I didn’t picture myself stepping into the shoes of hardcore medical advocate. Nor did I think it would be such a fight to ensure my daughter gets what she needs and avoids what she does not need. For those of you who are not familiar with myself or my family and have had no introduction to my former blog sites, I can give you a quick run down.

Our little princess was born in March of 2014 with a rare chromosome abnormality called partial trisomy 9&12. So rare that she is the only one in the world with it. We were given generalized ideas of what to expect with Lily but no solidified answers. So, for the last 5 years we have been blazing a new path in the wild Amazon of medical phenomena. Lily is 5 but is said to have the developmental capacity of a 4-6 month old. In fact, just a few weeks ago she spoke the most blessed word (her only word) I had only dreamt of hearing, Mama. I cannot put into words the joy that filled my heart upon hearing her say Mama.

After numerous surgeries; many specialist visits, appointments, therapies and hours spent in frustration and tears, I feel like we are mostly where we have always been but it looks a bit different. Lily stopped eating last summer entirely. Her reflux was so violent that she lost her desire for food. We had been told by many doctors that she did not have acid reflux or GERD but after having a visit with the top reflux specialist in the world, it was finally confirmed, the very thing I had been asserting all along. We were left with no other choice but to have a j-gtube put in her stomach. There was a part of me that had felt like we had failed her, we couldn’t make the reflux stop so that eating by mouth was enjoyable. Let me tell you, we had tried everything imaginable! I cried out to God on many occasions leading up to executing the inevitable. It was either follow through with surgery or helplessly continue to watch her health decline. Of course we did it. It was terrifying but a relief at the same time. We weren’t going to go through the daily struggle anymore of whether or not she will eat her food.

Lily has a tether again. Much like she did when she was on oxygen for the first 6 months of her life. The tether looks like a leash to me; walls, constriction, limitations. I want to cut the tether. Not metaphorically but truly get rid of it. I want to cut the tether to the insurance companies who, if her stuff isn’t billed right or the deductible isn’t met decides not to ship her life giving food and other medical supplies. Do you realize how disgusting that is? Insurance companies decide who gets to live based on what you can afford or if your prescriptions are billed correctly and if not, you don’t get what you need? That isn’t medical care, it’s control and a very sick way of playing god. And I use a lowercase g because there is only One true God, not mere humans who thrive on policies and quotas rather than helping innocent lives flourish.

If I could only express adequately what special needs parents go through just to get their kids what they need I’m quite certain your jaw would hit the ground. I had all of Lily’s deliveries lined up about a month before we moved out of the Midwest. We came to California to get well. We came here for the more consistent weather; the fresh produce, my husbands cancer treatment center (I’ll be writing about this soon) the ample sunshine, the list goes on. So far, honestly, Lily seems happier here. She was effected terribly by the weather systems that moved through Wisconsin on a daily basis, the temperature and barometer swinging wildly every single day. She and I both are human barometers, we both can feel it in our heads when a new pressure system is moving in. It’s not exactly a blessing but I am glad to say, I have not had a headache since being here and I don’t have any reason to believe she has either.

Cutting the cord isn’t going to be easy but we need to regain control of Lily’s health and health plan. I am indebted to the medical staff in Milwaukee for the life saving surgeries they performed on her, she would not be here without them. Now that we have the ease of being able to feed her without the worry of whether or not she will eat what we offer her, it is time to reconfigure her food intake. We need to get her weight back up. For the last 4 months she has been on juice during the day, reaching 68mls an hour. I am hoping to transition her to bulk feeds via a syringe. I had attempted it before with little success due to continued reflux but now that her reflux has drastically improved because of the pure fresh pressed fruit juices everyday, I think it is time to try again.

This isn’t where I saw myself or my family. I never thought I would have to be a medical expert on a bunch of stuff more people have never heard of or been exposed to. I never thought I would be researching the things I have had to research. But I don’t think you can find freedom in all of this until you go through the various stages of grief and acceptance, eventually moving onward and upward. You can’t just camp there. We didn’t ask for this, nor did Lily. Lily depends on us to not camp in our sorrow and to make decisions that may not please all parties involved. I have done my share of arguing my position of why we do or don’t do certain things on Lily’s behalf and I’m not afraid to continue to do it either. I will do what is in her best interest even if no one else understands or supports it. One day when I leave this world I will give an account, that is the only thing I am concerned about. Not what this or that specialist says. I have often come to the conclusion that if it doesn’t make sense to the majority of the people around you, it is Spirit led. I’m sitting here shaking my head with a smile on my face. It’s true. If it’s impossible but you can see the outcome, it’s God. Sometimes you can’t see the outcome but you know that you are supposed to do something a certain way, go, do it. Don’t be afraid, God will guide you. Rely on Him, He is already where you are headed. THAT is comforting.

This is a long hike, we reach plateaus and resting places but we haven’t arrived yet. We just keep seeking Papa’s face every single day to give us the next move to make. I am tossing out my preconceived notions and ideas, the way I think everything should look. The vast majority of my pain has been grieving over what I thought should have been. There is freedom in taking things as they are and relinquishing those things to God to bring good from them. He has no intention to harm us or punish us for some unrepented sin. You died and were raised with Christ a brand new creation and your goodness is because of His goodness. We were meant to be free in this life, we don’t need to be enslaved to rules; fences, limitations and ideologies. All things are possible through Christ. God is Lily’s healer, Jehova Rapha! He put the medicine in the food. He had a plan for all the disease we would encounter here in our lifetimes. He foresaw everything. We just need to return to that plan. It isn’t a plan to ruin your mealtime fun and enjoyment, we just weren’t meant to eat many of the things we do eat. Our household is realigning itself with the original plan and within it, freedom. Many blessings friends, I hope this blessed someone today.

Here we are!

Hey there friend, thanks for joining me. 

“Some people will only love you if you fit into their box, don’t be afraid to disappoint.” 

white and black moon with black skies and body of water photography during night time
Photo by GEORGE DESIPRIS on Pexels.com

There is a life that all of us are eager to live. Some of us have no idea what it is, others are certain about every single step they take. I have found that the more carved out I have made my life to be, setting certain parameters for how I will live or what I will or will not do, the more push-back I get. Now, I am not saying that it isn’t normal to go head on with obstacles, sure, they’re everywhere but the tighter I held onto my idea of what life should look like, the more disappointing and un-enjoyable it became. The more I tried to attain to my own ideals, the more frustrated I became.

Whose ideals are we supposed to live up to? Who are we trying to please? Why is it, that when I thought I knew what I was doing, I realized I had no idea what I was doing, at all? These are general questions at the moment, we’ll get into the potatoes on these thoughts at some point.

If there is anything I have learned recently, you can’t please everyone. No, I take that back, you can’t please anyone. So, don’t bother trying. Just be the amazing person Papa created you to be and your people will surround you with love.

Without even realizing it some of the people in your life have placed parameters around you, in addition to the walls and fences and limitations you have placed around yourself. The sky really is the limit if you believe it will be. Do you want to go further? Break free? Find the life that you were destined to live? Then let me ask you, what are you going to do about it? “If you always do what you’ve always done, you’ll always get what you’ve always got.” Henry Ford.

My mind needed to change, my thought patterns, my perspective, everything. I needed an overhaul, I’m still a work in progress. We all are. There were so many things I spent too much time thinking about that I just wasn’t designed to carry the load for. All the worries that used to swirl around in my head. Oh sure, they come back and pester me but I recognize their illegal access much quicker now and ship them back off in prayer.

It’s just time to move on, isn’t it? To break out of old habits; ways of thinking, way of living. This is what this blog is going to be about, life happening. Whatever it looks like, however it comes along. To just roll with it and not get knocked down by life but be empowered by the gifts we have to power through. God had a much bigger plan than to get plowed over, He had a plan for us to thrive!