Post Forty-five: Endo Surgery Number Four

Tomorrow Sam and I are heading to NYC for a week full of doctor appointments, leading up to my 4th surgery for Endometriosis on July 26th. When I started having symptoms at 11 I never would have imagined it turning into a lifelong struggle with multiple surgeries. Lately I’ve been grumpy heading into this surgery, angry to even have this disease. Angry to need another invasive surgery. Angry to even have to endure this again. This morning as friends prayed over me, one said thank you to God for providing an answer to our prayers by providing my Endo team in NYC. Instantly my angry viewpoint melted away. 

The last three surgeries left me in more pain than before, and for the past 4 or so years we’ve been praying for a cure. Though scientists are making progress, a cure is still decades away. However, about a year ago we started praying and searching for a new doctor. In April we went to NYC to meet with Dr.Seckin, a world re-known Endometriosis Specialist. At that appointment we learned that adhesions and lesions are completely covering and tangling my organs together, so much so that my uterus is being titled (or glued) to the point of almost sitting on my spine. My pain levels have been 8-10 every day for the past year, so that would explain why.  I’ve learned a new internal strength I didn’t know I even held, trying my best to not let it hold me back from life. But I’m exhausted and I’ve hit my breaking point 11 months ago. All this to say: I will not be angry anymore. It’s okay and healthy (to a point) to be angry at a disease that’s disrupting your or a loved ones life, but it’s a sticky place to let yourself sit in that anger. It’s a lonely place to sit in that anger. 

I’m declaring that this week I’ll go forward confidently that God has provided this talented team of specialists to heal my body. This week I’ll go forward knowing that it will be hard, painful, and at times I will still feel furious towards this ruthless disease. I might get angry again. But I will rest in knowing that God has not and will not forget me. I will rest in knowing that He wouldn’t have provided this team without knowing how my life might change a year from now, what’s the healing has commenced. 

I’m humbled going into this week, that God’s answer to this prayer is bigger than I could have known. It isn’t a cure, but we are able to travel to NYC for 11 days. During those days I’ll have an MRI, 2 pre-op’s and then a 6-8hr surgery with a gallery with 4+ specialists. I’ve lost count of how many will either be in the room, or on standby to join if they’re needed. To have found an Endometriosis Specialist who has a team already built for pain management, spine, lungs, bowel and other organs is just amazing. Then back at home is my sweet mother-in-law watching Mac so our minds can be at ease knowing that she’s safe and loved while we can’t be there. There’s our church family surrounding us in prayer and support, reaching out to offer all the help that they can give. This surgery and everything surrounding it is bigger than us. It’s all God and we are beyond blessed. 

Thank you all for your prayers, words of encouragement and help. It means a lot to us.

Mrs.Hess, out.

Post Forty-four: Becoming Mom & Dad.

What a busy past month it has been! In the middle of January Sam and I went on a Mission’s trip to Haiti. We taught VBS for a week, took photographs of school time, Sam was the leader of worship and a few adult Bible studies and I helped paint colorful ABC’s, numbers, shapes and animals on classroom walls. It was a wonderful and fruitful trip.

We hadn’t had any news on the Adoption front since November, so before leaving we gave our social worker the okay to say yes on our behalf if any situations came up. We’d be unreachable for 10 days while we stayed in the boonies of Haiti. Since officially being on the Waiting List I don’t think that I’ve not had my phone on me, so it took a lot of faith and handing the control over to God to be without service for so long.

That’s just what we did. With the business of all the activities the possibility of missing The Call just sort of left my mind. I’d think of it once or twice a day and just kept handing it to God. It was wonderful really, pouring into His work, my relationship with God, growing my relationship with Sam and finding peace in not having control. We were kept busy working sun up to sun down. Haiti is a beautiful place, there’s great joy in the people among poverty. A simpler way of life. I learned just how much can be accomplished in an hour without any distractions from phones, television and boredom. I felt at peace within my self and with God, which it had been a while since I really had.

One thing that I’ve brought home from Haiti is confidence. Confidence in myself and confidence that God is big and His love is unending. Confidence that whenever He had planned for us to bring Mac home would be the perfect timing, would be His timing. Confidence that His timing truly is perfect, even if  it can be difficult and painful in the waiting. Lastly, confidence that He will provide and has already provided.

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As we were heading home we joked about what if we had become mom and dad while in Haiti, but when we re-entered the land of service there was no messages from our SW waiting for us. Maybe she was just waiting for the 30th, which was the official day that we were returning home. We arrived at 3AM and I had a doctor’s appointment in Waldorf in the afternoon. Still no call came, so I made a plan to call our SW the next day.

I tried waiting until mid-morning to call, but the anticipation was killing me. Did no news mean, well, no news? I called her at 9AM and left a message. I started reading my Bible and finishing my coffee when she called back at 9:51. Her voice sounded chipper, which isn’t the tone I was used to. I was used to the, “I’m sorry, but this one wasn’t the one that God has planned for you guys” tone. She was asking about our trip, so I thought that she was just excited to hear about Haiti. When I was done with a blurb about our trip she asked if we were ready for our second adventure.

Hold on, what?! Does this mean what I think it does?! I cried for a solid 5 or so minutes while she waited for me to pull myself together to hear more about our child. She was born in the beginning of January. She?! We have a daughter?! You guys were chosen the day after you left for Haiti. We really did become mom & dad while in Haiti?! Would you guys be able to come in Thursday or Friday to meet her? We get to hold her, see her, meet her SOON?!

I called Sam sobbing. I’m not sure how he even understood what I had said to him. I think it was, “Just come home now.” Thankfully, his office is 10 minutes away and I greeted him holding the girl “worth the wait” onesie. Everything felt so surreal.  We were having lunch together when our SW called again to set up a time for us to come in.

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The next day we were sitting in the room. The highly anticipated room that we heard about during training classes. The room where new-parents come in to visit with their child(ren) that are in Interim care. In the hall we heard our SW say, “Are you ready to meet your mom and dad?”

The minute that our daughter was placed into our arms the nearly 5 years of waiting for that exact moment made complete sense, only in the way that God can calm and provide clarity that the little girl we had just met, well He had her in the palm of His hands this entire time. How blessed are we to have her in ours now.

Let me tell you, she is beautiful and precious beyond words. Handing her back was difficult, but knowing that we’d see her again next week and then bring her home to following week made it a little bit easier. We spent the rest of the day  Thursday and Friday sharing with family and then on Saturday a friend came to capture our excitement to share the news with all of those who have been on this Adoption journey with us. There has been so much celebrating from ya’ll and we’re so grateful to have you sharing in our excitement.

I wanted to say thank you. Thank you all for your support through prayers, encouragement, fundraisers, reading our blog posts and now sharing in our excitement.  We feel so very loved and cannot wait for everyone to meet our daughter! We’re bringing her home on Feb. 13th!!!

We’ve also been overwhelmed by how many people have asked for us to create a registry so they could know how to help while we prepare to bring her home. We have been slowly preparing for this time for over a year now, but we’ve gone through the nursery and this is a list of things that we don’t have yet.

We’re registered at Babylist, which is a registry where you can add items from any store so you’re not limited to one place:

http://www.babylist.com/channynandsam

And of course hand-me-downs are wonderful too. =)

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We’re just so excited to bring our little Mac home on the 13th! That’s 4 Days, 22 hours and 16 minutes away. Not that I’m counting down or anything.

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We actually made a paper link chain. We made one when we were counting down for our wedding and I think  it’ll become a new tradition for big life changing events.

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In the inside of each one is a note and Bible verses to read together each day.

Did I already say that we’re so so so excited to bring her home this coming Tuesday?!

Mrs.Hess, Mr. Sam & Lil Mac, out.

 

My Endometriosis Story PT2

Two years ago I shared my Endometriosis Story. A lot has happened since then, so I thought that I would re-write it. Some parts will be word-for-word from my first post, which you can read here. I’m sharing my story to raise awareness and be a voice for Endometriosis. There has been a lot of improvement in the community and research that’s being done, which is really encouraging!

My Endometriosis story began when I was eleven. However, I didn’t hear of the word until I was twenty-one. I’m sharing my story again to bring awareness to this disease. I try my best to be accurate in any medical information or statistics, but if I’m wrong with anything please let me know. Before I start, please don’t let the topic of periods keep you from reading this. Yes, Endometriosis is a disease that involves the uterus. But it’s nothing to feel shy or embarrassed about.

What is Endometriosis (Endo for short)? It’s a disease where tissue called endometrium is found outside of the uterus. Basically, when a woman who has normal periods bleeds it flows out as it should. However, when a woman has Endo the blood makes it way out of the uterus and sticks to other organs. These are called lesions, which continue to bleed every cycle and create scar tissue as the body tries to heal itself. A way that I describe it is that each lesion is a blister that reopens every month and then creates scar tissue as it heals, which sticks to other organs. This cycle repeats month after month. As you can imagine, it causes a lot of problems and pain.

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(A diagram of what Endometriosis adhesion’s can look like.)

During the summer of 2004 I was 11 years old and at a bible camp. I remember waking up one morning to cramping and bleeding. From what we were taught in school that year, I knew that I was having my first period. During the class it was mentioned that women experience cramps with their periods and that Pamprin or Advil should help. So I went to the camp nurse for some advil, but it didn’t help much. Swimming time was nice because it helped ease things. One of my favorite parts of camp was playing soccer, but my pain would get worse as I ran around so I couldn’t play that summer. Instead I read a lot and went swimming whenever the chance came up.

That’s my first recollection of the pain. However, I just shrugged it off as cramps everyone who has their period experiences. When school started that year I remember visiting the nurse whenever it was my time of the month. I would be allowed to lay down in the back with a heating pad for thirty minutes and then be sent back to class. Soon other girls in my class started getting their periods and I couldn’t relate to what they were talking about. I remember saying once, “I can feel myself bleeding right now.” and then being told that I was being dramatic. What I was experiencing is called Menorrhagia, which is not normal for an eleven year-old (or anyone) to have.

Things stayed the same until 7th grade. One morning while I was walking to my bus stop I felt  a sharp pain that kept getting worse while I was on the bus. The bumps from the ride were too much and I was crying from the pain. I went straight to the nurses office when I got to school. At first I was given a heating pad and advil, but it continued to get worse. That’s when she called for an ambulance. When I was in the ER I found that I was bursting 5 oh-so-lovely cysts. However, after that episode I was told that it’s common for women to have cysts and to see my general practitioner (GP) about it. When I saw my GP I was told that I had developed the cysts because I was depressed and was given anti-depressants to prevent them from growing again. Being 13 I trusted my doctor and took the Prozac, which didn’t help any of the symptoms I was experiencing.  

The Prozac did nothing to help stop my painful periods. I ended up in the ER a couple more times from bursting cysts, each time being told that it was normal. I missed a lot of school, even when I was in school. I failed gym class. Twice. I just didn’t have the energy or strength to participate whenever I had my period. There were two nurses at my high school: one that let me have the dark room, a heating pad and an hour or two of rest. The second one would give me one of those Thermacare sticky heating pad with the same comment every time, “I can only give you this once. They’re only meant for students to sample and then have their parents buy them more if they liked it.” and then would send me back to class.

It was around this time that had I started to cut myself. In hindsight now, I think that I resorted to self-harm because no one believed the pain that I was in. Every time that I would go for help I was told that it was either normal or that I was making it up for attention. So I released my pain and frustrations by cutting myself. It was a pain that I had control over combined with antidepressants that made me feel hollow. I am so relieved and happy to say that ultimately, it was Jesus who took control over me and my life. It was His grace that saved me from my downward spiral and (dare I say), period of my life.  

When I was 15 I finally decided to stop taking Prozac. I was taking it to stop the cramps and it wasn’t doing that one bit. My GP was still telling me that I was depressed and exaggerating my pain to get attention. I continued believing her until I realized that the bad cramps, heavy bleeding and frequent bursting cysts weren’t normal and there was no way all of this could be caused by sadness. Something was wrong, but the ER docs and GP didn’t seem to care much about finding the cause.

By that time I was going to youth group, had a job and no was longer self-harming. I was starting to find myself as a person now that I wasn’t foggy from the Prozac. It was around then that I came to an understanding that I was my own advocate when it came to my health. I lived in a small town in rural Minnesota, so there weren’t many options to find a good doctor. So I started to take a heating pad with me to school and wore it on the bad days, not caring what anyone thought. Since writing my first post, friends have reached out to let me know that I also slept in classes a lot whenever I needed my heating pad.  

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Me proudly wearing my heating pad at school.

I had transferred to a charter school for my senior year. They calculated credits different than public schools, so I ended up graduating on time. Somewhere along the way I got a bad ear infection, which turned into an infection of my Mastoid bone. I had to have surgery on my left ear when I was seventeen. My new school was understanding whenever I missed days for not feeling well, which was nice because it took 6-8 months for me to fully recover from that surgery. I was taking pain medications during my recovery, which in turn helped relieve my bad cramps. Though it took a while to recover, it was honestly nice to have a break from the pain during my period.

Then I went on to college. This is when things started to get a lot worse for me physically, but it’s also when I started to piece things together. I ended up in the ER countless times from cysts bursting and migraines. I talked to other women in my dorm about their periods, which is when I learned what a normal period should be like and that something was definitely wrong with mine. I started going to a chiropractor weekly, which helped me with migraines, back and hip pains. Not so much with my monthly cramps.

It was during my sophomore year when things quickly went south. I was starting to be in pain all of the time, not just 1-2 weeks out of the month. The doctor that I was seeing sent me to a Gastrologist to have a handful of tests done. They didn’t show much, so I was diagnosed with Gastroenteritis and was told that I just needed to wait it out. At this point my doctor knew my entire history of the cysts, painful periods, heavy bleeding, exhaustion and acne. However, it was all dismissed as a type of flu that I had to get over. I just knew that it all had a connection, but continued to suffer and wait to feel better.

The summer after my freshman year and onward I was dating, and then became engaged, to my husband Sam. We would switch driving 2.5 hours to see each other almost every weekend during the first semester of my sophomore year of college. His mom is a nurse and began to ask me questions after I was continually curled up with a heating pad on the couch. She was the first medical professional who showed an interest and concern about the pain I was experiencing. She encouraged me to try and see another doctor about it.

I found a new doctor right after Sam and I got married. I practically begged for her to help me. After having an ultrasound done, I received a call to come back in. She then told me that something didn’t look right about my uterus, but it was above anything that she knew about. I have to say that I really appreciate and respect when doctors are honest about not knowing something and referring you to someone who might. So I was sent to a Gynecologist, who I was able to see that week.

It was during my first appointment with him that I heard the word Endometriosis. He said that he strongly felt that I had it and there were two options: to start birth control and see if that helps, or have a Laparoscopic surgery (Lap) to diagnose, and if found, remove it. I chose to have the Lap, as we had wanted to start a family right away.

I was so scared when I went in for my first Lap. What if nothing was found? What do I do then? I remember waking up and immediately asking if the doc found anything. I cried a lot when the nurse told me yes. That my doctor had found Endometriosis Lesions. The cause to all of my pain finally had a name. I thought that this would be the start of a new life. My suffering had a name and now I could be taken seriously by doctors. Disappointingly, this was only the beginning instead of the end.

The doctor had botched my first Lap. Not only did he end up just taking a few samples of the lesions he had seen (instead of removing it all like he had said), but he also put the incisions in the wrong spots causing nerve damage. I was in more pain than I was in before the surgery. My doc told me that was impossible and eventually getting in to see him became difficult. Thankfully, Sam was offered a job in Maryland. We moved soon after that and I quickly started looking for a new doctor who specialized in Endo. I had my first surgery in November 2013, we moved to MD February 2014 and scheduled my second Lap for April 2014, just five months after the first.

It was during that surgery when my new doctor found a lot of lesions and adhesion’s that were left behind previously. There was also a lot of scar tissue that had formed over those five months. My doc said that he thinks the previous doctor had become overwhelmed by the amount and chose to close instead of excising all the lesions. I’m still angry at the first doc for lying to me about taking everything and treating me like I was crazy afterwards. Anyways, I had around a month of relief after recovering from my second surgery before the pain started up again. My doctor referred me to a Pain Management Specialist so I could be relatively comfortable as we tried to find out a new way to ‘treat’ my Endo.

We were still trying to conceive, so during the summer of 2015 we started doing rounds of Clomid, two to be exact. I wasn’t told beforehand that Clomid is known to cause Endo to grow quickly, which is what ended up happening to me. The Clomid rounds didn’t end with pregnancy, instead the pain increased and became even more constant. I started having Painsomia, which is when pain is so severe that you can’t sleep through it. The pain was literally 24/7. I started doing damage control by taking a birth control named Aygestin and cried uncle when it didn’t work. I couldn’t keep putting my body through all of this to become pregnant. I had to accept that carrying a child in my womb wasn’t going to happen. Even if it did, I became afraid that if we had a girl I would pass Endo onto her. So we stopped TTC and scheduled my 3rd Lap.

This is where my story hit a pause when I wrote the first one. We had just announced that we were adopting and that I had my 3rd Lap scheduled for Dec. 2nd, 2015. It’s hard to imagine, but I went through hell recovering from that surgery. There were nights where I felt that I could have died from the pain I was experiencing. Honestly, a lot from that time is fuzzy to me. But I’m going to try and explain what happened.

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Photo taken before being wheeled back to my 3rd Lap.

I went into my 3rd surgery with an expectation that this one was going to change my life. My doctor had placed Lydia, an IUD, during the Lap. Our hopes were that this form of birth control would lessen my estrogen amounts, making my periods lighter and in result lessening the amount of lesions that could form. I woke up from my 3rd surgery in so much pain. My doctor had forgotten to consider the amount of pain medication I was taking daily and prescribed the wrong strength for coming out of surgery and for the recovering period. I had been taking 10mg of Norco every 4 hours and he prescribed me 5mg of Norco to take every 4 hours and wouldn’t listen to me when I tried to explain that to him.

The pain was unreal. I was also experiencing contraction like pains from the IUD. I was told that my body was trying to reject the IUD, but he felt like this was the best plan so to wait it out for 3-5 months while my body gets used to it. If I could just make it until my body accepted it we could try Lupron and I could feel so much better. Alarms in my head went off when Lupron was suggested. I’ve read so many stories from fellow Endo Sisters that Lupron is not the right treatment plan.

What is Lupron? Well, to doctors who know nothing of Endo, it’s a miracle drug that can cure Endometriosis (please note the rich sarcasm in my tone) It has some unruly side effects like hair loss, weight gain, bone density loss, hot flashes, chills, nausea, diarrhea, insomnia, facial hair growth, acne, depression and memory loss. That’s only naming a few. Doctors who prescribe it for Endo tend to never mention that it’s used as a chemo drug in certain cancer cases.

The non-sarcastic answer is that Lupron is a drug that puts women in temporary menopause. Which, theoretically could make absolute sense with Endo. It would stop estrogen, which is the hormone that feeds Endo. For some women this treatment works wonders and does help them, but for others they experience what was said in the paragraph above. The chances are unknown and some of the side effects, like bone loss, are irreversible. It’s a really big gamble and doctors act that it’s not a big deal, but it is.

In the end, the doctor who I trusted to perform two Lap’s on me, who was running Endo studies and performed surgeries nearly every day, wasn’t actually a specialist. He did an okay job, but not the best. I cut ties with him when he refused to take the IUD out and continued pushing that I try Lupron. A few days later I started getting these awful migraines and the contractions were just getting worse. I cried uncle again and went to the ER, where they told me that my body was fully rejecting the IUD and the hormones from it. But they didn’t have anyone trained to remove it, so I had to go back home and wait a week to see a new gynecologist to take it out.

In the three months that the IUD was in I had gained 30lbs and I had a pretty serious moon-face.  Since my body was trying to expel it the entire time that it was in, I now have scar tissue damage in my uterus. To be frank, since then having intercorse is very painful and I’m angry that Endo has taken that away from me too. I’m also still furious at that doctor for refusing to take it out and insisting that I take Lupron. From what I’ve heard from other Endo Warriors that’s sadly a fairly common thing to have happen. There are (find statistic) real Endo Specialists in the US. All other doctors who claim to be cause more harm than good.

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Photo taken soon after Skyla was taken out. 

I started to give up hope that I would find a good Endo doc. My Pain Management doc is wonderful though. I was one of her first patients with Endo and she’s since grown to mostly seeing Endo Warriors. I was her guinea pig and would help teach her more about the disease. Every month that I see her she knows more and more about it and seems very passionate about helping women who suffer from chronic pain. We made a plan to just help keep me comfortable while I search for a new doc.

For the past year and a half that’s what I’ve been doing. My pain is generally at a 7-8 everyday without pain medications and a 4-6 with. My periods have been all over the place some being 7 days and others 19 days long. During my cycle the pain is a 11-14 without meds and a 7-10 with. I haven’t had a 0-3 pain day in 4 or so years. It’s become my normal and it’s definitely been a struggle to learn how to thrive in life while experiencing 24/7 pain. I’ve become depressed numerous times, but am thankful to have been able to realize that and seek help to be pulled back up.

IMG_2061.PNGI have a new plan, which fills me with a bit of hope. I’m going to be spending 2018 researching and interviewing real Endometriosis Specialists. A handful of them provide free consultations, so I’ll be taking advantage of that. Then we’ll be changing our insurance in 2019 that will help cover out-of-state surgery. I want my fourth Lap to be life changing. I hope to know what a pain-free day feels like again someday. And I can only dream of that becoming my new normal.

Right before my 3rd surgery I was searching for an Endo shirt that would make me feel empowered. I was able to find one that said, “Do something about Endometriosis” and it’s since become my motto. For a disease that affects 176 million women worldwide not many people have ever heard of it. If every single person who has heard of it does something, whether it’s sharing stories, talking about it in normal conversations, going on awareness walks, etc. It’s just so important to do something.

Who am I aside from Endometriosis? I’m a wife, mom-to-be through adoption, sister, friend, nanny, baker and small business owner. I try my very best to be present aside from the pain and to raise awareness for this disease every single day. I love this quote, “Scream so that one day, a hundred years from now, another sister will not have to dry her tears wondering where in history she lost her voice.”

In the past year I’ve worked at opening an Etsy shop where I sell Endometriosis Warrior tees that I’ve personally designed. This past winter I was part of a Holiday Bazaar with Endometriosis Foundation of America where 10% of sales were donated to the work that they do. My own story could have changed when I was 11 years old if my school nurses had known what Endo is, so I’m going to continue donating 10% of every Endo tee sale to EndoFound that will go towards education in schools. I’ve also started a new Instagram page named hopeandpatients. My hope is that it can become a place for people to come to for support, awareness and stories being shared. Follow along there for all things Endo, as my blog also follows our Adoption journey.

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Wearing my Endo Warrior tee. 

Thank you for taking the time to read my story. It took 10 years for me to be diagnosed. I pray everyday for young girls who are struggling that this won’t be their story. How can this be prevented? By doing something. Share my story, share your own story. Talk about it. Doctors may not know a lot about Endo, but those who have it do. We can all be a voice, turned into a booming change.

Do something about Endometriosis. If you have Endo, do something. If you know someone who has Endo, do something. If you’re just learning about Endo now, do something. There’s an estimated 175 million women worldwide who suffer from this awful disease, yet there isn’t a cure yet. It takes a woman an estimated 10 years to be diagnosed properly and even after being diagnosed they still have to fight to be heard and helped. This could be prevented if those in the medical field were better trained in this disease, and also if it were taught during sex-ed/puberty talk in schools. There is so much that could be done. So let’s just start with this: Do something about Endometriosis!

Below are a few articles that I’ve found useful over the years. There’s also my IG page and my Etsy shop information. Please feel free to e-mail me at channyn.kay@gmail.com if you would like to talk.

Shop:

http://www.etsy.com/shop/designsbychannynkay

IG: hopeandpatients

Links:

Post Forty-Three: His Grace and love.

Wow, it sure has been a long time. I really need to start getting in the habit of writing a post after things have happened. Other wise I feel overwhelmed to include everything and then put it off. As always, this post will be jumping around a lot.

Life has been busy. At times it’s a welcomed busy, and at others it’s not. When the business stops for a second my heart aches. I’ve been learning how to lean on God in a new way that’s difficult to explain, but I don’t think I would have ever learned if we weren’t waiting to Adopt.

Last Christmas Sam’s family came to visit. It was such a lovely Christmas, one for the books. During that time we decorated onesies and bibs. We talked about how we imagine the chain of events to go after get the call. When would we want them to come? What events are the big-can’t-miss-moments? How long of a bonding time with just Sam and I will we want to have? By next Christmas you’ll be visiting to see us and Mac.

I’ve been crying quite a bit these past couple of weeks, just longing so so badly to have Mac sleeping in their room for Christmas. This time of the year snuck up quickly, and those dreams of having our Little Mac home by this time the next year have hit me hard.

Then there’s times when I think that someday we’ll have 3 kids and this period of waiting will be a fuzzy memory. Time will move so quickly, cherish these times when it’s just you and Sam. Growing families are bustling around us, moving so so quickly, friends children, who I swore I just met for the first time, are now turning 3. And it can be so so easy to get stuck in the cycle of thinking, well when will it our turn?

Enters God, his grace and love so so big.  A while ago we studied Spiritual Gifts in the small group we attend, where I learned that God gifted me with the gift of discernment. I am very thankful for that. It allows me to step back from the bustle in my head and focus on the peace that only He can provide. To see those little nuggets of God’s hand in the day-to-day, and sit to appreciate them. Now I can understand why that has always been normal for me to do, and how to appreciate it even more. Though there are times when I choose to sulk, and those times are never pretty. Waiting for our child to be born into our lives, with no timeline in sight, can become very overwhelming when I loose sight of needing to trust in His timing.

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On our living room wall there’s a canvas with Ecclesiastes 3:11, “He makes everything beautiful in His time.” It’s surrounded by photos of our love/life story as a couple. From the very first photo taken of us as boyfriend and girlfriend, to our wedding and adoption announcement photos. It serves as a daily reminder of how much God has seen us through. I can’t imagine meeting anyone more perfect to live life with than Sam. I have no doubt that God had planned for us to be husband and wife. I can only begin to imagine the child that God has planned to be our first.

I can’t wait to learn all about him/her, even if that equates to sleepless nights that turn into an ah-ha moment as their personality begins to shine through. I see some of those moments now in the sweet girl that I’ve been an nanny to since she was 3 months old.  How special this time has been.

These thoughts have been stirring in me for months now, unable to turn them into words. I’m about to change topics to something really really wonderful. We’ve been celebrating this for quite some time now, and I apologize for taking so long at sharing this news.

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A letter arrived a week after I wrote the last post that updated about our Adoption Fund needs. I had reached into our mailbox that day and found an envelope that looked to be real snail mail, so I excitedly bounced back inside to open it. I only made it into the entryway when I ripped it open to find a check that covered the remaining amount that we needed to raise. Sam was next to me, and I did my very best to read the letter that came with it out loud.

To tell you the truth, after my last couple of updates I started to loose faith that we would ever have a child. Has every maybe been a cold no because Adoption was our plan, but not Gods? Were we ever meant to have children? I was becoming angry and bitter at God for taking the one thing I’ve always dreamed of having away from us. Then this beautiful letter arrived. The sender has asked to stay anonymous, which I want to respect. I know that he/she is reading this right now and I just want to say: thank you for listening to God’s nudge telling you to go home immediately and write that letter. I’m currently crying, and continue to, every time that I read it. God’s promise and love pours out of every word.

The letter filled both Sam and I with an unshakable truth that God plans for us to bring Mac home someday. That He wouldn’t move someone to go home and write such a powerful letter, and give so generously, without His plan at work. On especially tough days I go into Macs room, sit on the rocking chair and read that letter. A huge nugget of God’s touch in our lives, in our Adoption story, still being written.

And then there’s the celebration of our Adoption being fully funded. I”m just left speechless at the enormity of that. Thankfulness. An overwhelming amount to each and every person who helped us along the way. You are all a letter in the story that God is unfolding in front of us. From the bottom of our hearts, thank you.

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As this Christmastime is especially tough, we are able to find thankfulness in knowing that God will deliver us through this waiting period. All that I need to do is stand firm in Him and spend a moment of quiet- a good quiet- in the business around us. I absolutely wish that Mac would be home this Christmas, but I’m starting to stop putting random timelines of, “We’ll get the call by Thanksgiving, Christmas, Valentines day, etc” and just truly trust in God’s timing.

Blessings this season,

Mrs. Hess, out.

 

 

Post Forty-two: Adoption Funds Breakdown

We’ve been so busy continuing fundraising efforts that we’ve forgotten to take a step back and share with everyone how things are going with that. So in this post I’ll break down the numbers. Before I start, I want to say thank you. Thank you to everyone for your support through prayers, messages and financially. We are so blessed.

Adoption Cost: $26,000 not counting closing legal fees.

Raised: $11,000 through all of fundraisers to date.

Workers Comp: Remember my wrist injury while on the job? We were blessed this year to have finally closed the case with a lump sum. From that we were able to put $6,000 towards our adoption fund.

Ourselves: Being a nanny has been a huge blessing financially as well. We were able to set $3,000 aside last year and I just started watching her again in August so that amount will continue to grow. We’ve also been able to get all of the baby necessities so we’re all set for the arrival of Little Mac.

Total: $20,000 

What’s left to raise: $6,000. 

Current fundraisers: Macarons, Etsy Shop and other dessert orders. You may also donate to via PayPal at channyn.kay@gmail.com

I’ve started Macarons again this month and have had a few dessert orders. We’ve also started selling “not perfect” leftover desserts from these orders for discounted prices. When I do that 100% goes straight into the fund as the other costs have already been deducted from the order. I should start calling these the Guilt Free Desserts because not only are you getting a delicious treat, but you’re also benefiting The Hess Family Adoption Fund. It’s a win win. =)

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I’ve also opened my Etsy Shop a little over a month ago. You can find handmade clothing designs in it. We’re also working on expanding with handmade signs and home decor. We’ll also be doing a few Craft Fairs this fall! You can find my shop at http://www.etsy.com/shop/designsbychannynkay

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As you can tell, we’ve been very busy continuing our fundraising efforts and are so thankful for the amazing support that we have had thus far. Thank you again to everyone. I just feel like I can’t say thank you enough. We are incredibly blessed.

On the Adoption front: We have no new updates. Just waiting for the call!

Thank you again,

-Channyn & Sam

 

Post Forty-One: Thank you.

My last post was written out of perspective. My brain fog from being in the hospital, taking Prednisone and just overall exhaustion has lifted. I wanted to say thank you to everyone for your prayers, love and support throughout our journey of bringing Lil Mac home. The internet is pretty neat in being able to connect with family and friends far away and close to home. Thank you so much and I’m sorry to have momentarily lost sight of that.

 

Post Forty: Simply put, but not so simply put.

I don’t really know where to start with this one. I guess that I’ll just go with what I wrote Friday night, after we received this no.

We’ve been on the Waiting List for over a year now. There’s been a handful of almost situations, and yesterday we met with a birth family. The meeting went really well, but we knew that they’d be meeting the second family that they chose through looking at profile books soon after we left. Today our SW called and I knew right away that she had the I’m-so-sorry tone again.

I know that God’s plans are perfect. I trust that, but it sure doesn’t make it hurt any less. It stinks more when our village of family and friends let us know that they just feel like this is the one, and it keeps not being the one. And then having to tell everyone that we received the news that another family was chosen is tough. I’m tired of hearing “I’m sorry, we’ll keep praying!” And then the conversation continues on as if nothing happened. There’s some who do ask how they can help, but I just don’t know how they can, but the offer is appreciated. I just wish that folks would understand that every no is a loss, ya know?

Then I have a heart that thinks of everyone in the situation. The no’s are so hard to hear time after time, but there are so many lives impacted by this one decision. I feel for the birth family, for the other families waiting to hear back as well, dream with the family that received the call of a victorious yes. And feeling all of that for everyone is exhausting.

And after these no’s we pick ourselves back up because there’s another EM looking at our profile books the next week. Or it takes a few months to hear about a possible match. And we continue to pray for every child that we weren’t matched with. We continue to pray for the families whose arms finally got to hold their child. We continue to pray for the other families who are aching as we are. And we continue on waiting and trusting God, because that’s all that we can do.

But that doesn’t mean we aren’t breaking and aching. It’s confusing because as we’re hurting from no after no I know that ultimately each child is with the family that they’re meant to be with. Ultimately they are safe and loved and that’s all I wish for them. Because of this I brush my feelings away because how can I be sad if they’re with the family they’re meant to be with? I just ache for our child to be in our arms. All of these feelings are so confusing and are so hard to explain. I hope that I’ve done an alright job at trying to.

And I know it may be confusing after reading this to understand that we 100% appreciate every message, prayer, letter, etc. We are so so blessed, loved and grateful for ya’ll. Goodness, it’s just all so difficult to put into words! About a hundred emotions for one situation. Simply put, waiting to adopt is hard.

Thank you for your prayers and for taking the time to read this confusing post,

Mrs.Hess, out.

Post Thirty-nine: Late Night Feelings.

Tonight I’m feeling the deepest feeling of longing that I’ve felt yet. For Mac to be home and for the moment when we’ll first hold him/her. More so than I have ever felt before.

And, I don’t know what that means. Maybe Mac’s birth mother looked at our book today and is thinking about us. Maybe she will look at it tomorrow. Maybe one of these could actually be the right situation and we could get the call.

Or, maybe it won’t be. It’s taken me over a year to feel okay sharing moments like this. I say it’s because we’ve been busy, which we have been, but it’s also just a really tough thing to share about.

Especially when I take a step back and realize that this is so much bigger than just us and the roller coaster emotions that go with the Wait. There’s so many lives involved and I don’t feel the right to feel so heavily for them all. I guess I feel that my feelings are insignificant. Maybe that’s just the stupid devil whispering that. Candidly, that is why I haven’t been blogging or even sharing much with family and friends.

All that I can do is pray. Right now Sam is playing guitar and singing Wake Up by All Sons and Daughters. The verse “Not our will, but yours be done Lord” hits close to my heart. As I’m starting to open up more, all that ultimately matters is that the Lords will is done. I’m so thankful for that and the peace that knowledge brings.

A reminder that I have to tell myself frequently is that God’s got this and that Mac is in the palm of His hands and that’s a pretty special place to be. Isiah 49:16

In the meantime, while I wait to be able to hold him/her in my own hands, I snuggle with Macs baby blanket often so he/she can have a piece of home while in Interim care for those first 30 days.

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Mrs.Hess, out.

Post Thirty-Eight: Profile Book

It has been a quiet past month on the Adoption front. I had a dream last night where Sam and I received The Call. We were just heading out to meet Mac when I woke up and realized that it wasn’t real. So to say the least, today has been tough. I know know know that God’s timing is perfect, but that doesn’t take away how my heart aches to hold him/her in my arms. I think that can be said for anyone waiting for their baby.

A prayer request would be that two EP’s will be viewing Profile Books this week, including ours. I’ve been meaning to post our book for a long time so figured now is a better time than any. Our book is one of the most personal things to share so I’m a bit hesitant, but looking at other families books is what helped me while making ours. So I pray that ours does the same for any families that are working on their own.

Also, whenever I find out an EP will be viewing our Profile Book I go into the nursery, rock in the chair, look through the book and pray. It can be easy to go down a line of thinking of, “What if our book is awful?” “What about our book made them not pick us?” etc. But when I look through ours God reminds me that it is 100% us and someday an EP will just click with it and choose us to parent the little life growing inside of them. That’s a pretty amazing thing. So here it is: (Note that it would be viewed better on a larger screen.)

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Thank you for your prayers and support,

Mrs.Hess, out.

Post Thirty-Seven: Bad Bad Day; Health Update

Yesterday started off pretty good. I slept well the night before, which doesn’t happen often, and woke up looking forward to watching Railyn one last time before summer began. Then while I was eating breakfast I was hit with the sharpest, deepest and contraction-like pains that I have ever experienced.

I texted Sam right away that I needed him to come home and thankfully he works just a few minutes away. The pain was bad enough to want to call an ambulance, but at the same time if this was pain caused by Endo the ER does nothing to help. So I waited it out for an hour, but it just kept getting more and more intense. So we headed to the hospital.

When we got there the reception lady didn’t seem too concerned as I stood in front of her doubled over in pain and a bucket handy in case I threw up. The chairs in waiting rooms are so uncomfortable so I laid directly on the ground. When I got called back for registration the kind nurse assured me that I would be bumped up on the list. This has never happened before. Other times I would have had to wait hours to be seen, but this time I got called back within minutes. Well, at least I got a bed quickly. It still took over an hour to be given anything for the pain.

After I was given some pain medication the relief only lasted for a few minutes. I told multiple nurses this, but kept getting the, “I’ll see what the doctor says.” remark. For the 4 hours that we were there, not a single person came back to check on my pain levels. On the walls there’s a sign that says, “Pain management is our goal.” which is a joke. I left the hospital in the same pain that I arrived in. Granted, I think that the nurses were confused by my eagerness to go home after kidney stones were ruled out. I wanted to get back to my heating pad and a more comfortable and private place to be in pain, especially if I knew how to help it better than they did. Now that I knew this wasn’t something aside from Endo I got into the survival mindset that I’m in everyday and that can be confusing for people.

Here’s the thing about ER’s, they aren’t well equipped to handle chronic pain. I get that, the ER is for people who have been in an accident, had a stroke, heart attack, etc.   However, I would think that being in so much pain that I’m thrashing around and crying out for God to stop it would mean something. That when women with Endometriosis have a flare in pain they could have somewhere to go for help. Endo specialists have referred to flares being more painful than giving birth. Yet, we receive comments that we’re seeking for drugs, or today’s comment, “Endometriosis is just something that you’re going to need to learn how to live with.” would never ever be uttered to women doing the best that they can with a disease wrecking havoc to their insides.

My bad day didn’t stop there. When we got home Sam left to fill some prescriptions from my pain management doctor. A little while later I got a text from Sam that our pharmacist refused to fill them until tomorrow, even though they were cleared to be filled today. I called my docs office and they called the pharmacy to let them know that both them and my insurance ok’d the fill, yet she still wouldn’t fill them until tomorrow. Which would not only leave me in this much pain without anything to take, but I’ve been on these medications for years now so my body would go through withdrawal. All because a pharmacist just felt like doing so. After some argument she finally agreed to fill the script for break through pain relief, which I’m thankful to have gotten one filled today.

I’m finding myself really upset that a pharmacist could do something like that and then show no compassion once hearing that I’ve been bleeding for 30 days and spent my day in the ER from the pain that I’m in. Other woman in the Endo community have been receiving the same thing from theirs since Trump’s changes to the Health Act was released. Though what they’re doing is wrong, it leaves me scared for what this act could bring if it’s approved. My pain doc and me have made a plan to keep me in pain management until I’m 40-45 years old. By this age I will be going through menopause and could get a hysterectomy without needing to include add-back hormones that could weaken my bones. I have Scoliosis and my grandmother has shrunk in aging, so taking these add-backs could cause irreversible pain with the bone-loss. I don’t really want to switch one pain for another. Saying this, a hysterectomy does not cure Endometriosis. It can only help Adenomyosis. In fact, the add-on hormones could even create a perfect storm for Endo to grow back. After having 3 surgeries that didn’t help pain management is the best course of action to allow me to live life instead of survive in life.

Anyways, my pain is finally back down to it’s normal 6-7. I really feel like this is because of the prayers and it’s nice to see/feel that as I’ve been doubting God’s ability to heal when it comes to diseases. Prayers may not heal me completely, but if they’re able to help for a day that’s amazing. And I’m really surprised to have written so much with how exhausted I am from yesterday. I am thankful for the prayers, texts, for a friend that brought Sam lunch and me original goldfish to the hospital. And another friend ordering us our favorite food to be delivered for dinner. It all left a huge impact on my heart after receiving such bad care from the hospital and pharmacy.

For some reason I feel like I need to re-say that I write about this for awareness and not sympathy. In sharing days like yesterday I hope to give women who have Endo a voice, even if it’s from tiny ol’ me. It’s a tough and not well known about disease that impacts Endo Warriors lives daily. Thank you for taking the time to read about my bad bad day turned good by God and actions of our brothers and sisters in Christ.

From the bottom of my heart,

Mrs.Hess, out.