A year ago today, we accessed my port for the first time. The port was placed on February 6, 2019, and was accessed on February 14, 2019. Jared and I don’t really like valentines day (sorry it’s just not our thing,) so the 14th has become a victorious day that we remember and celebrate God’s faithfulness.
Now I know this may seem strange, especially because the port was not what we wanted. So why do we celebrate this? Well, we did and do because this was how God chose to answer our prayers for a way to be out of the hospital more. It wasn’t the faithfulness we were anticipating, but it was the faithfulness we got. Sometimes God doesn’t answer our prayers how we feel they should be answered, but just because things aren’t the way we want them to be does not mean that God is not faithful or undeserving of our gratitude (considering we are undeserving of His grace, faithfulness, and love.)
In order for you to understand our celebration, I want to share God’s faithfulness in our over 10 month period of waiting with you. I want to be clear about three things first though.
- Our gratitude for where we are today does not mean that this was easy. Our celebration of His faithfulness does not mean that we got what we wanted. Our reflection on this time does not mean that things are perfect now. This is just our story of how God gave us the strength to go through what it took, albeit different than we thought, to get where we wanted to be which was home more.
- This is NOT going to be a positivity prescription. They are typically not helpful, and the last thing that I want to do is throw one in somebody else’s face considering I don’t enjoy it, but there is just something about the waiting (and more so waiting for the bigger things) that I have seen God grow a faithfulness in me that I never ever imagined.
- If we look at what the word faithfulness is all about, it’s about complete trust and confidence in someone or something. Now for me that trust and confidence is in Jesus Christ, but I know it can be different for others. In this post I am going to share how our faithfulness in Him has impacted my life, and how waiting is involved in all of that.
Welcome to our wait.
If you want to listen to this blog post, click here for Episode 11 on the Chronically Cultivating podcast
So about two years ago, I was becoming extremely symptomatic in what I thought was a POTS flare… that turned out to become my baseline, not just a flare. I had been trying lots of different medications for treatments of POTS, Postural Orthostatic Tachycardia Syndrome, and I seemed to be allergic to all of them. We went to my team in frustration of failing everything we had tried with them. As a last resort they said, “we want you to start having saline infusions done.” I was fine with that, but there were a lot of challenges that came with that due to EDS and my body. I have really bad veins, something that many people with EDS can relate to, and it was at the point where any IV that I got had to be done under ultrasound. They had to use needles much smaller than they normally would (I was using pediatric/infant needles) because with anything bigger my line would blow immediately. These challenges made this conversation about starting infusions frustrating. I couldn’t just do PIV’s at home (by a infusion company) or an outpatient infusion center because they wouldn’t have access to ultrasound so they just decided that it would be best that I go to the ED for all my infusions and that was the plan.
What we thought was going to be a once in a while treatment quickly became the only thing that was able to help manage the symptoms. About 2 months in we were going in so often that I just went to my team explaining how this plan was not sustainable. The ED is expensive, it takes so much time and energy, there were serious concerns about me catching viruses, and ultimately because the ED is not an infusion center. Finally one of my doctors said, “we want to refer to a new doctor who has worked very closely with this treatment and providing it at home.” So we got on the waitlist and it was a 7 month wait.
During this time, I was stressed. We had no guarantee that this appointment would work out or that I would even qualify for this doctor’s treatment plan. All we could do was faithfully go and get infusions while we waited, but it was really tiring and taxing on everybody involved. It was so miserable because we lost all of our weekends to it (because Jared didn’t work on the weekends so that was prime time for us to go) and if I needed to be there a second time a week someone in my family would driving out to our house to pick me up and take me in- it was exhausting.
Then God asked me to thank Him in advance.
About the third month in, I just really felt God asking me to hold on to His promises and one of His promises is that our grief will turn into joy. That needed to be my current job. I needed to make my job praising God for His faithfulness in advance, which was so hard to do because I was stuck in the thick of it. I didn’t want to be grateful- I was miserable! I hated the situation, that the meds hadn’t worked, and that I even needed this form of treatment! My body was not cooperating at all (that hasn’t changed much though lol), I was scarring all over the place from constant IV’s, and even with ultrasound sometimes the vein would still blow and we would have to do another- it was just miserable. And here God was saying “I want you to thank me in advance for being faithful.” After feeling that nudge in my heart for a while I finally said, “alright God, You know what? I am going to thank You in advance.”
The months following were just as hard as the ones before, maybe even harder. I tried to remember the story about the Israelites being in the wilderness and how everyday God would provide for them in the morning. They technically didn’t know the next day where their food was going to come from; unless they were faithful to believe that God would provide for them again tomorrow. I find that so true in my heart, that I’ll just be going through a day where I don’t know how I’m going to get through the rest of the day, and I wish more often than not that I just said, “I know God, You’ve got it.” Yet I typically get stressed, but I have been working hard to keep it in my mind that He has gone before me. He knows what going to happen tomorrow.
He is aware of everything that I am going to face, but that hope does not mean that the struggle isn’t real while you are in it or that it is any easier to go through.
Once we got in to see this doctor the anxiety was real, but we went in there, we did it. He was so knowledgeable and I was so grateful that my team had recommended that I go see him. During our time together he said, “alright I want to try one more thing as a ‘hail Mary.’” But it was kind of his one last thing to try. He followed with, “keep doing infusions as you need them, try this medication, and if this does not work then we are going to have another conversation” so we did that. It was really rough because I reacted so strongly to this medication and not in the way we had hoped. So let’s make it known that it was a very bad week and a half, but in that week and coming out of that appointment, I gave it all to God.
I finally let go of the outcome and left it to God.
Instead of praying that this medication would work or that I would be a candidate for what he’s doing if it didn’t work, I decided that I was not going to tell God what I wanted Him to do. Because you know what… that hasn’t worked out in the past pretty much ever. So I decided that I was going to just pray that His will would be done. I was going to pray that no matter the outcome, that Jared and I would have the grace and strength we needed to handle whatever comes our way.
By leaving this up to His will, I was choosing to believe that no matter what road we went down, that He would faithfully get me there.
After a long week and half and ultimately they decided to pull me off of the “Hail Mary” medication. Then we waited. While we waited, I told my family, “we are not praying for anything specific we are going to pray for God’s will to be done, and we are going to pray that He gives us the grace and strength that we need to get through whatever that decision is.” After 10 months of this long journey of being in the ED 1-3x a week and waiting on the right people, the decision was made that I needed a central line so that I could start home care.
At first there was this relief that a decision had been made and that we were moving forward. My biggest prayer through those 10 months was that regardless of how it happened I wanted to be able to spend more time in our home than in the hospital. That was not really happening for 10 months, so I didn’t really care if it was a medication that worked or it was that I needed to move ahead with home care- I was totally fine with whatever they wanted if it allows me to be out of the hospital more. At least I thought I was totally fine and detached from the outcome.
Then the surgery day actually came and my fear felt greater than His faithfulness.
You may remember, if you followed me on instagram in February 2019, that we celebrated the day of my first access at home and my first infusion (yes there was confetti involved because I firmly believe that you can’t celebrate without confetti.) Anyways, the post was met with some confusion and by looking back we can see why.
When the day came to access my port for the first time, we had accepted that this was our reality. We chose to celebrate His faithfulness of receiving home care, and this was how we chose to cope with it. Yes we were grateful after waiting faithfully for God to open up the door for me to be at home more, but even though we asked for His will… this wasn’t what we wanted. We shared the celebration publicly, but we hid the fear, anxiety, disappointment, and sadness over needing a central line. No one wants a device in their body that could kill them- let alone a device that requires a 3/4 inch needle in their chest weekly.
We got into our pre-op room and the nurses gave us the run down and left me to change. Jared was in with me and I just started crying uncontrollably. I couldn’t even look at Jared and I went on to tell him how, “I’m not strong enough to do this. I don’t think that I can bear the infection risks and only shower once a week. I’m not strong enough to have a needle put in my chest every single week, I can’t do this….” and I completely lost it. I literally was shaking and I wanted to bolt out of that pre-op room.
I explained how there was no way that this was what God intended because this was not the outcome that I wanted.
Jared just looked at me and he reminded me of what I had said to my whole family when we started working with this new doctor. This doctor had said we were going to try this new med in hopes that it works, but there was also the reality that it may not work. As much as I was praying for His will to be done, I think- no I know- I still really wanted things done my way.
I didn’t want to need a central line, in that moment Jared just looked at me and held me and whispered, “remember we prayed that His will would be done? Right now, this is His will and He is going to get us through it. And He is going to give you and I all the grace and strength that we need to go through this. It’s going to be okay.” Now I’m not going to lie friends, I did not believe him. I mean I was completely terrified and looking back, I’m so grateful for his faithfulness that stood when mine faltered, but having a port sucks. It’s so frustrating to know that I’m dependent on something I don’t want, but I sit here today and I still see God’s faithfulness in all of it.
I think of the quote that has truly changed my life from one of Lara Casey’s book where she talks about the phrase “She believed she couldn’t so He did.” I didn’t think I was going to make it through that port surgery. I didn’t think I would be able to handle a needle going into my chest every single week. Just like I didn’t think that I could (and still can’t) handle all the different things that this illness brings about.
And I’m right. I can’t, but He can.
It blows my mind that even in recognizing how frustrated I am with how things have gone and what I have needed to do, God has still shown up. Every single day, every single procedure, every single access, every single hookup to my line, every single everything God is there each step of the way. He has given Jared and I all that we need to get through this. He has given us all the courage, all the strength, and all the support to go through this.
There are a lot of things I’m still waiting on, and there are a lot of things that are taking a lot of grace and strength. But if you are in the wait right now like me, I encourage you to remember that God has gone before you. He’s already walked through your day, He knows exactly what you’re going to face and He is going to give you all the grace, strength, peace, love and support that you need to get through that day. If you ask Him too. I promise you that God will show you His strength and His power in this time, and pray that He would give you peace of mind knowing that He has got you.
No matter how long the wait is…
and when the wait is over, no matter how small the victory, get the confetti out and celebrate God’s faithfulness even when others won’t understand.
Cassie Nolin is a married spoonie who lives the chronic illness life with EDS + Co. (Ehlers Danlos Syndrome and it’s comorbid conditions.) She challenges others to choose grace over guilt in goal setting, and is in ministry part time serving the online community through The Spoonie Study. She loves planting, hand lettering, and sharing the hope she has found in Jesus. Her blog, Living the Chronic Illness Life, is in the top 100 chronic illness blogs and her podcast, Chronically Cultivating, is produced by Speaking to the Heart Network. Cassie encourages women to live authentic and intentional lives through their diagnosis’ not in spite of them. You can learn more about her at www.livingthechronicillnesslife.com