Posie is a smart, fun, and stubborn toddler with the heart of a warrior. Yes, silly name. Her name is Rosalie and she lovingly earned her nickname from her big sister, who calls her Rosie Posie (from the song “Ring around the rosies, a pocket full of posies…”). Since birth she’s battled nausea, vomiting, and pain. By her 1^st birthday she had been given a multitude of diagnoses, including acid reflux, gastritis, gastroenteritis, colic, cow milk protein allergy, and soy intolerance. She was on different acid reducers, we tried special formulas, and I even went on a special diet her doctor put me on because I was nursing exclusively, hoping that would help her issues, and it didn’t. Then by 18 months old she was diagnosed with failure to thrive, extreme oral aversion, and Sensory Processing Disorder (in addition to and separate from her G.I. problems). (Side note: we’ve seen countless doctors/nurses over the years, but we have been blessed with the very best pediatricians and the greatest GI doctors out there and we are thankful.) She endured so many tests, doctor visits, procedures, ER trips, and a hospital stay. Ultimately she was diagnosed with a mitochondrial disorder known as Cyclic Vomiting Syndrome. Because this disorder is rare and the symptoms can mimic so many other disorders, it often leads to misdiagnoses; which is why it took so long to get to this diagnosis, and ultimately CVS is given as a diagnosis of exclusion. I was very pleased to learn that the National Institute of Diabetes and Digestive and Kidney Disease has so much information on it.

So what’s life like for her? For us? Well it’s hard to watch her hurt because she generally suffers from chronic abdominal pain from dysmotility in general,  but also associated with abdominal migraines. We’ve had some doctors tell us she might develop migraine headaches as she gets older because there’s a known prevalence of CVS sufferers having abdominal migraines eventually developing migraine headaches. She already gets headaches now and with my history (and family history) of migraine headaches, I understand the connection. I get a lot of funny faces made when I mention the word “abdominal migraine”, so in case you’re wondering what an abdominal migraine is, the way it’s been explained to me is that it’s like having a migraine in your stomach. It’s this intense pain and it’s caused from a misfire between the brain and gut. We were offered migraine medications for her but we’ve declined, we’re hoping to wait till she’s a bit older. We have started her on B2 which seems to be helping some. Her disorder can be incredibly frightening sometimes since she can puke from 5- 20x in an hour in a bad episode; dehydration does happen, and requires prompt medical attention. We’ve went to so many urgent cares and emergency rooms over the past few years. Even when she’s not puking she has other symptoms that are really bothersome to her. She might dry heave when there’s nothing left, has no appetite and it’s hard to get her to drink, she gets dizzy and is sensitive to light, and occasionally has a fever. We make sure to get her regular dental care because she’s at risk of early tooth decay from the acid erosion due to constant acidity from the vomiting and she’s got acid reflux now which can affect your teeth. We’ve learned to live in a “darker” home, we only keep a couple of lights on and we even installed black window blinds. We learned that dark and quiet places seem to help her find comfort during episodes.

Her toddler bed has been a permanent fixture in the living room for a long time. My husband and I have had to sleep on the couch and sofa next to her so we can immediately pull her up out of bed if she begins to choke on her vomit while asleep. She also has an NG feeding tube now and we’re doing feedings through the night again so it’s convenient for her to be in the same room. CVS is so intrusive that our family can’t really commit to doing very much (activities outside of the home) because we don’t know how she’ll feel from day to day and I’ve been unable to work outside of the home since she was born because of her unpredictable medical needs and her therapies. Since there is no cure for this condition, proper treatment for her is an exhausting task for her medical team and my family, and it’s complicated at best, and is solely based on symptom management; so she takes a daily cocktail of medications to help her symptoms. She has also developed some other conditions secondary to the CVS including constipation, gastroparesis, G.E.R.D., and pseudo-obstruction. Her little belly will swell up and get hard and she looks like she’s pregnant and it will break your heart. When that happens the vomiting is consistent and the pain is unbearable and we’re unable to travel anywhere because she can’t bear to be buckled into her car seat because the tummy sensitivity and pain. The one good thing about her NGTube is along with getting her the proper medications and meeting her daily nutritional needs, a healthcare provider showed me that I can also withdraw air with the syringe, which helps the abdominal swelling and pain when that happens.

I’m not really sure the exact words for how I felt when we got her diagnosis. Maybe it was relief. I needed to hear a name. I needed for her to have a diagnosis.  Before her diagnosis, I felt kind of hopeless. It was hard to be told she had bad reflux, or another terrible tummy bug, or a really sensitive tummy, or another allergy over and over again. It was a very helpless place to be, in waiting room after waiting room, wondering what you had done wrong. I have days where I feel sad or defeated, but I have more days where I look back on where we’ve been and just thank God for walking us through it. All of the overwhelm back then, I can barely even feel it now, I know it was there but I know He was there and He’s here now. We’re still praying for a miracle.

It’s also hard to live with. Not just because it can be so isolating but because sometimes people just don’t understand the extent of how sick she can be. The problem with having some diseases is that if people catch you on a day you’re looking “fine” they assume you’re perfectly fine. I understand this all too well, as someone who suffers from an autoimmune disease…it’s true that we never know what someone else is going through. People look at my toddler all the time and say, “Well she looks just fine”, or “She looks like she’s feeling better”. I agree, many times when she’s out and about she is doing well. Also, kids are mostly resilient. They can be puking their guts up or have a broken leg one day and be bouncy around the house the next. They’re strong like that. She has some tell-tales; bloated belly, dark or sunken eyes, fatigue, clinginess, these are a few things that tell us she’s about to have a cycle. Come to my house and look at my carpet. My entire house needs new carpet, she’s vomited all over every room, but the living room has been cleaned so many times, and it’s nasty. She’s puked on it so much. We just have it steam cleaned but there are always new stains by the next month. It’s so gross.

Something I hear a lot from well-intentioned people is, “God will never give you more than you can handle.” I’ve never believed that but I’ve always tried to accept that people are being polite and maybe are just trying to say the only comforting thing they know to say. I feel God will consistently give me more than I can handle in order to drive me to my knees in order to seek Him; which in turn helps me to better serve Him, but also just draw nearer to Him. I love Him. I need Him. I want to seek His face before I seek His hand, I want to seek Him and know Him instead of just asking for things, but I don’t always do that. Not near enough and I know my fickle heart and I’m forced to question, “If He didn’t give me more than I could handle, and I could handle it all my own, what would be the drive behind me seeking Him more?” How will I submit and surrender to Him if I think I’ve got this whole life thing figured out? I prefer to say that God will never give me more than HE can handle.

Something positive that has come from her going through everything she has been through is watching her learn how to care for other people at such a very young and impressionable age. The healthcare professionals she’s had caring for her have really always been great with her and she’s learning to be caring like they have been to her. All of the waiting that we do is teaching us patience. We wait for God to answer us. We wait in the car rides to and from appointments. Sometimes I feel like I live in the car it seems. We do a lot of waiting in the waiting rooms. Not many things will expose your true character like waiting. Her being sick has taught us to appreciate the little things more. When you’re taken out of what feels like “the world” and you feel like you’re not really a part of your community anymore and you feel isolated, it’s a really lonely feeling. That’s been one of the hardest things. So just appreciating every small thing is really beneficial to your well-being.

I have my days where I question “why” and I don’t want to be the adult. I don’t want to clean puke. I don’t want to go to appointments. I don’t want to stay up all night (Oh yes, she has insomnia as well). I don’t want to drive to feeding therapy, or measure out medications, or run a feeding tube. I want to just be able to get in my car, run errands, visit with friends, and just plan a day with no restrictions.

Obedience is something I’ve been growing into. As my life changed so much with having a baby that was so much more demanding than I anticipated, I became more obedient by just being more intentional with my life. In her infancy, when the months flew by – but seemed to last forever, and we couldn’t seem to get to the bottom of what was going on, I felt sort of broken. I was in a place where I would spend my days worrying how I’d get through the night and then spend the nights wondering how I’d make it to the day. It was a dark place to feel such overwhelm all the time. I felt that whatever I gave to God; my prayer time, my “Five Minutes”, my Wednesday night Bible study, or whatever it was, that it was whatever was left of me. He got the “left-overs”. I had an altar call and that conviction swallowed me up and I chose to make the change. I chose God. I chose to quit pretending like everything was going to be alright and to just cling tight to the only One that I was sure of. I began waking up and giving Him praise first thing in the morning, before my feet hit the ground. I began to pray to Him in my car before I left my house in the morning, giving Him my day, surrendering and asking Him to use me however He wanted. Intentionality. We all need to be more intentional with our lives. Think about it. I still need to be more intentional around the house, I seldom ever make my bed but I know that I feel better when I do. If I’m intentional about going before the Father for my needs when I begin my day, then I’ll be more intentional with everyone who crosses my path, and I pray for that as well.

I know that I’m a lot more thankful now than I have been in the past. Just a few months ago I was telling some friends that this has been a real challenge for me. This control issue I’ve struggled with. You see because of her oral/eating aversion, vomiting, and weight issues; her doctor and I have had several discussions about a feeding tube off and on for a while. Something called a MickeyTube. I’d do anything to keep her from getting one. I actually don’t think I could think of anything much worse than her getting a feeding tube. Between her sensory issues, always puking, and worrying that it would set us back in feeding therapy; I basically told them it wasn’t happening. I simply couldn’t handle her getting one. I couldn’t handle feeling like a failure, like everything we had worked for was going to be swept out from under us, because realistically it could cause her to regress. I was only thinking of all the wrong that might happen. I wasn’t trusting a known God. I wasn’t trusting that my Lord, who is Sovereign, would have it all figured out for us. But He does. He is God with me. He is a God who hears.

I was just thinking about what I wanted. I was thinking about what I couldn’t do. I was thinking about what I didn’t want to do. I was thinking about what I didn’t want her to have to do. Then it happened, she began to regress over a couple months, and one day her doctor sent us the ER for dehydration and she was admitted to the hospital. The next day she got an NGTube and we spent the week at the hospital as she was observed and the nurses taught me how to take care of her with her new tube and pump.

God broke my heart that week.

I asked Him to.

I was so angry. I was exhausted and I felt this hardness in my heart. I just felt like I could throw a tantrum because nothing was going my way. I asked Him to break my heart because I just didn’t want to feel the way I was feeling. I was sitting in her hospital room so mad, I was mad that she was crying about wanting to go home for the 9^th consecutive hour and I just wanted her to STOP because I couldn’t change anything for her. I was mad because my plans for the week were ruined. I was mad that I couldn’t be at home to help my oldest daughter prepare Easter gift bags for her teachers like I’d told her I would. I was mad that I’d cleaned my house all day and I had a roast that cooked for 12 hours and nobody got to enjoy it. Well that’s not true, that was a blessing because my husband and oldest daughter got to eat on it for a few days, which was God’s provision – He KNEW I’d be in the hospital all week and my family ate on that all week long! What a blessing in hindsight. I was mad that I wasn’t wearing more comfortable clothes and didn’t have warm socks. SUCH TRIVIAL STUFF. I was mad about not getting any sleep. I was mad about feeling mad and my heart was hurting.

I was mad that somehow, somewhere along the way I had failed my daughter and now everybody was going to know it, and there was no way to hide it. I couldn’t hide it from my husband. I couldn’t hide it from her sister. I couldn’t hide it from our family. I couldn’t hide it from our church family. I couldn’t hide it from her school teachers. They were all going to know that I had blown it. They were all going to know that I simply wasn’t capable of taking care of her. I’ll tell you something, when the enemy wants to attack a mother he’ll come straight for her children’s health and straight for her sense of capabilities. I asked God to break my heart. I asked Him to break my heart for what broke His and to forgive me; I felt so selfish. He broke it. Let me tell you something, don’t ever ask God to break your heart unless you’re serious about it, because HE WILL DO IT! Imagine the nurse that walked into her patients room to find a toddler and middle aged woman both sobbing their eyes out, praying on the bed, and unsure of what to do. We were a sight.

It was exhausting and hard. I’m still so thankful. If she hadn’t come to that moment in her journey, if we hadn’t ended up in that hospital, at that specific time, we wouldn’t have gotten to meet the people we did and nothing is by chance. God purposely positions us and where I was is where I was going to be of influence to others and they to me. It’s really beautiful how intricately the Lord has woven each of us into one anothers lives. I got to share my testimony with a few of her healthcare providers in the hospital. He works everything together for good. God can use any experience to speak to another person, He can use any of us to give a word to someone and use any means to get us a word. He’s constantly showing up and showing us who He is. I’ve been told several times over the past few years and even recently, how God will be glorified through her struggles, but my eyes have been dimmed to that. I still wish I could see right now how He is going to be glorified – in a bigger picture sense – and with every setback we have I wonder to myself if He’s getting the glory. Hoping He is but still wondering if He’s ever going to get the glory, if I’m ever going to get it right. It’s hard. It’s like a viscous cycle. We make progress and she regresses. She again makes great strides then gets sick again and has another setback and we get discouraged. But then I think back to all the doctor appointments, weight checks, ER trips, tests, procedures, and how many times through those exhausting moments, when I felt weak and weary, that I was able to share my hope with others. What a beautiful thing. It’s not just about us and even when Rosalie is getting cared for at all those visits, the compassion and care she’s learning to have for others as she’s constantly cared for, is something to be desired. I hope she’ll grow into a relationship with the Lord through Jesus Christ and that she will love Him and serve Him, and that she will recognize the platform He’s so graciously given to her to use for His glory, so that she might always be faithful to point people to Jesus. (2 Corinthians 1:3-5)

I have to repeat 2 Corinthians 12:8-10 over to myself, reminding myself that His strength, His and not my own, but His strength is made perfect in our weakness. When it’s too much to bear I just keep leaning into Him. I’m not always so faithful to trust, as I often try to grasp for control of things, and too often I try to be strong all by myself instead of surrendering and letting the Lord be my strength and refuge.  I’m sure that I get wrong more than I’ll ever get right.  Thankfully for me, I’m a receiver of grace and mercies that are new every morning. I also happen to know that one of my strongest moments of faith came in one of my weakest hours of flesh, when I cried to my King, “If it is your will for her to be healed and made in perfect health at this time, we are believing for that and will gladly accept it. I don’t want you to use my daughter like this. It hurts my heart to see her suffer but I am happy to accept this if that is what will glorify you the most from this journey. We will still love you, we will still praise you.”

That felt like more of a plea than surrender in that moment; nonetheless that was the cry of my heart. It’s been a blessing. I’m different. I’m just a different person now, there’s more light, there are chains I don’t have now; because I was able to tell Him that He could go ahead and “have it”. Imagine that!? Those funny little times in life when we ever so gently present the Lord with the permission to have control over the very things we’re desperately clinging to…….as if He weren’t the maker of heaven and earth. As if that control was ever out of His palm.

Hospitals are fun. But not at all. That was a difficult place to be planted. It took my eyes being opened in a hospital room, on the heels of begging Him to break my heart, for me to see how I’ve gotten to share my testimony to so many people the past four years who I never would’ve ever met had I not been on her health journey with her. It brought me around to being thankful, and to be in awe, because I sometimes don’t realize how much I’m sharing my testimony. But He’s so faithful to bring a listening ear and a listening heart; it’s our job to be faithful right back. He doesn’t call the qualified, He calls the willing. I hate for my child to be sick, it hurts my heart to watch her suffer, but it’s beautiful to think that I get to share about Jesus with others while we wait.

Do I believe that God is healing her? Yes, I’ve seen so much healing in her over the past couple years. Do I believe He is going to give her a complete healing? Yes, if it is His will and I am praying for one. Either way, our hope is in Him. Sometimes it takes a lot of time, love, patience, and lots of prayer to truly embrace and trust in God’s plan. I know He’s doing more than I can know.

“For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.”                        Jeremiah 29:11 (NIV)

I like this verse because I know that God is full of love and good things for us. I know that He is for me. I know that He has a plan for her life, no matter what that might look like, and that it’s ultimately for His glory.

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