Touched in love.

I posted a few days ago on the need to be more authentic in my blogging. I had no idea what I was in store for when facing that challenge.
If you know my Mom then you know that she fervently asked for prayers yesterday.   I had close friends, who after seeing my momma’s post, asked for prayer, along with my incredible sister. It goes without saying that you are probably aware that the only mention I gave of having a tough time was a picture of me and my baby girl, quoting “Everything is going to be just fine.”
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It’s been quite a week. I was in the emergency room. I slept for nearly two days straight. I got bad news at an appointment and then more bad news after having a minor heart procedure the next. Jeez Louis Batman. Enough in one week. Enough.
Many who know me don’t see this side of me often, if ever.  I rarely seek out help or advice or a shoulder, even prayer, especially when it regards, what I often refer to as, my “hospital world.” Don’t get me wrong, I never want to hide that I am a transplant recipient. I proudly boast this fact to all who meet me, as I am so proud that I am able to carry the heart of someone that seized the ability do so himself.  I am not hiding that nor am I embarrassed that I’m a “forever patient.” When it comes to the ins and outs of being a patient and the roller coaster journey that accompanies it, I just don’t pass that on to others… often times even the ones closest to me. Most of us “patients” choose to do this because we know the burden we place on our family and to do so, to even our closest friends, is a hard thing for us to accept.  We don’t want to live in a world where we are consistently sick, where we are constantly having to need, where we are constantly being asked about it, and where we are chained to the title of illness… but the irony of all that is that we do.  We have no doubt what it’s like to be sick often, to take more medicines in a day than some take in a year, to need to sit still just because that’s easier than the repercussions of moving to get the medicine you need at the time, to be poked and prodded and examined to the point that modesty has been stripped from us and, even though we should, we don’t care any longer if our butts show when we turn around in a hospital gown or if we forgot to shave our legs before we walked out the door to the hospital or if we are asked for yet another sample of some bodily function we normally leave in a toilet and not a cup. We’ve learned to be a patient pretty well. What are the odds, right? Now considering all I’ve just said, we are also good at pretending. We pretend that we feel great when our body hates us. We pretend that we’re having a really good time when all we want to do is escape the crowd and sleep. We take stairs by two and run to keep up with the youth group kids when we can hardly do it. We laugh about how many times we had to reschedule a date because we were in the bathroom purging what was left from breakfast or just stuck at the hospital because even though our appointment was at 9am it’s 4p and were still doing tests. It’s the life of a patient right? We cry because we want relief. We cry because we just want to be a good mom, employee, housewife.  We cry because we somehow know deep down that we have to get to the next step and to do so is to push through the ordeal we’re having right now. And we deal with it because we have too.
I wouldn’t trade this life for anything. I realize after reading what I just wrote, that this may come as a shocker. You know, most days it does to me too. I have met the absolute most wonderful people on my journey. I have been cared for by hundreds of nurses who made me laugh even at the hardest time. I’ve made friends I never would have despite. I still talk to the people I walked the “hospital life” with when I was just 10 years old and I cherish them completely. I truly love my life even with it’s roller coaster journey. What’s not to love when you are so loved in return.
I have found myself in break down of tears – yesterday, last night, and even tonight as I begin to share this next thought with you. SO much love and prayers were offered yesterday just because my momma asked for them. I received almost endless messages of hugs, love, good thoughts, and offers to do absolutely anything they could — Beth, even offered to clean my house (I giggle at that because she has no idea what she is *really* offering by doing so, but even still I’m brought to tears because I know she means it to it’s core). I was and still am floored. I know I have amazing friends. I have friends that I talk to daily, friends I talk to often, and friends that just check in from time to time, friends from high school, college, and the hospital world… but they are amazing friends, MY amazing friends, and there’s so much love to be found in them. I can’t offer enough thanks for how you all stood up for me yesterday, on a day that I needed it most. Once again, it’s amazing how God knows just what we need. In the midst of terrible news, friends from every walk of my life offered encouragement in ways I needed it the biggest. Truthfully, there was a sense of relief found in everyone knowing I was struggling yesterday. It wasn’t as hard as I expected to be seen from a different angle.  So – thank you. I humbly and desperately seek your prayers and encouragement right now.
For those of you that missed my sweet momma’s post yesterday, here is a bit of the run down.

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After what seems like an eternity of feeling lightheaded and just not functioning well, I finally ended up in the ER on Sunday night. After a few medicines and a bunch of tests I was sent home and told to return to the clinic, where all my doctors reside during the day, a few days later.  Wednesday I was given the news that my heart function had dropped and was told to pack a bag and come back for a heart catheterization/biopsy Thursday, with the expectancy of being admitted after. I did just that… I packed my bag and after a terrible nights sleep and a wake-up, I headed to the hospital – bag in hand and my chin up. The biopsy was harsh and even the doctor agreed that we needed to change the way things went down in the OR for me. I was rolled out shortly after with a bandage on my neck, surgical hat on my head, and into a room to rest up. They decided that I could come home based on the initial results in the OR. My heart was doing it’s job for now and I didn’t desperately need to be in a hospital bed. GREAT NEWS. But we had no idea what to expect from the phone call we have grown to anticipate and would receive later that afternoon. *Ring Ring Ring* My mom or dad usually takes these calls for me. Mostly because I’m snoozing away after a long morning and also because I want to make sure every detail is HEARD well. This time this phone call came with some bad news, definitely not what we had hoped for. The one word that transplant recipients have come to dread is REJECTION. Our hearts function in a way that a disease would in our body… we have to lower our immune systems so our body doesn’t attack our heart. Despite how long it’s been mine, my body still sees it as a foreign object. As a vague example, the average body will attack a common cold so one can be healed from it — not living with a common cold forever. The issue for transplant recipient is that we are wonderfully stuck with our hearts forever and we have to take medicines so our body accepts that — forever.  My medicine failed to do the job this time as my count lowered and my body attacked my heart. This left me with the dreaded word – I was in rejection. The good news in all this is that they are treating me at home. No hospital gowns or lengthy hospital stays. The bad news? The medicine prescribed has terrible side effects. 😦  So that is that. Learning to be comfortable as this medicine takes its toll will be challenging. I’m scared. I’m a little angry. I’m grateful that there is a medicine to help. I’m glad for another wake up.
My momma taught me a huge thing yesterday in asking. My sweet friends want to help. I will not nor do I want to bombard you with facebook rants or post daily progress here, but I will ask tonight that if you think of me to please pray. The road ahead is in no way an easy one but with the help of my friends and family, I know that it can be easier.

So thank you. For your prayers. For caring. For sweet sweet words. For letting me tell you I’m sick. For taking time out of your day for me. Most of all, loving me despite the challenges.

I’m incredibly and overwhelmingly touched tonight.

Here are a few things I was encouraged by in just a single day… may you find encouragement in them also.


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Until We meet again,

myrainbowcounts@gmail.com

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5 thoughts on “Touched in love.

  1. Steph, your post has touched my heart tonight. So brave to share what is on your heart and mind. Our Sherri lived a life of epilepsy and depression all her 22 years of life. Was in and out of hospitals with two major brain surgeries. She felt the same things you have shared in your post. You may not remember, but when she would have a seizure in her class, they would bring her over to our room to sleep it off. She always hid from her peers and family members how bad she felt. Your post brought back so many memories. God can trust some people with more issues in their lives then others. W don’t always understand why though. You have touched so many lives and will continue to touch lives. Your mother knew who to call on in your hour of need. We all felt her pain and urgency to go before the Lord on your behalf. I never realized how much your life was going to touch mine, until now. Watching you graduate from my K-5 class brought tears to my eyes as it did for all of my kids all those years ago. I think it was because I was going to have to let you all go to new teachers. Not knowing if they would take care of you like I did in school. Once a “daytime Mom” always a Mom for my kids I guess. After reading your sweet post I realized you were taken care by so many wonderful people and I worried when I should of trusted. 🙂 Each step we take is ordered by the Lord if we are His child. He knows just how much we can take and when enough is enough. YOU HANG in there my sweet Stephanie. Knowing that you are loved by so many. 🙂 God bless you for being so open and honest with all of us. 1Peter 5:7 “CASTING ALL YOUR CARES UPON HIM FOR HE CARETH FOR YOU.” Hugs to you and yours, Mrs. S 🙂

  2. Wow, you always amaze me, anyone who struggles with anything needs to be in your presence for a day, just look at one of your pictures or post and the Glory of God shines all over and through you. What a true testiment you are of what a child of God looks like and acts like. So get some rest sweetie; prayers being lifted and rest asure God’s got this. Luv ya bunches!

  3. Your strength is admirable! Please know that you are in my prayers. With your mindset, love of others, and God, you will get through this! Thanks for sharing your story, it is truly inspiring. Em has an amazing mom.

  4. Steph,
    You are auch a warrior and an encouragment. You have such a sweet and beautiful soul. You and your family are in our constant thoughts and prayers. If there is anything we can do from afar please let us know! If you need to talk, vent, or anything else I’m always here!

  5. My dear, sweet, nosey neighbor you are an inspiration. The day you & James moved in across the street was a blessing for me in so many wonderful ways. I want you to know just what you mean to me & my family.

    First you love my son. From the moment you guys meet Lucas you have spoiled him & made him feel special. As a mother you know how much that means. Even after your precious gift, Emilyn came into your life you & James have made time for Lucas.

    When I meet you I was in a lonely dark place. I had my spirit & trust crushed by people I deeply loved. I honestly was ready to close myself off from friendship because I saw it as a risk. I had forgotten all the benefits of having a friend. And then there was you. Your bright smile, sweet disposition and your genuine love of life! You changed how I looked at everything.

    Your mark on my life is indelible! I am a better me because I am blessed to be your friend. You never judge, you step up to help whenever you are needed, most of all you make me feel special even when I felt nit good enough. Thank you, for just being you. You are an amazing gift from God. I love you to the moon & back!

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