Celebrating 4 Years of FIRES

Celebrating. That’s a word you don’t often think of when it comes to living with a chronic rare disease.

Leading up to this anniversary is always an emotional time for me. I see the loss. I see the time we spent in the hospital wondering if David would live. I remember the beeping of the monitors, my heart stopping every time his eyes would start rhythmically blinking. I remember his lungs collapsing time and time again. I remember it getting so bad that they had to put him into a medically induced coma and life flight David to another hospital. I remember the doctor’s telling us that if he kept having seizures like this he’d either die or live the rest of his life in a vegetative state. I remember the attempts of bringing David out of his coma and him continuing to seize, and doctors having to reverse the process. I remember the drug trial and praying it would be our answer. I remember finally bringing him out of the coma and him going through drug withdrawals. I remember forgetting to eat, the nurses reminding me- family members and friends bringing us food so we’d remain nourished. I see the heartache, the struggle, the years of adjusting. I see the years of therapy and medication adjustments that have set David back far from his peers. I see the year I spent grieving the son I raised and trying to adjust and wrap my mind around raising this child who looked like mine, but was so different from my own. I wonder what his life would be like if this wouldn’t have happened, and I can’t see it. I can’t see him “normal.” I can’t see the life I hoped and dreamed for him up until the moment FIRES became our reality.

If you’ve read up to this point you’re probably thinking, “this doesn’t seem like a celebration.” It probably seems like I’m still grieving. To be honest, I don’t think the pain will ever go away, but I don’t consider myself “in grieving.” I have this image in my head when I think of myself and my grief. I imagine this beautiful clay vase with a big ole crack down the middle. The crack is mended, but it is still very visible. The mended crack is the main feature. Like, when you see this vase, the first thing you see is the crack. The vase doesn’t leak. You can still put water and flowers in it. It works fine. But it probably wouldn’t be your first choice if you were trying to impress people. However, when you do use the vase, you get teary eyed, because it has sentimental value to you. That’s how I see myself and my grief. I take my moments to grieve, and then I move on, because I have a life to live. That’s the thing. Even though this isn’t the life we hoped for David, HE STILL HAS LIFE. That is a gift. That is worth celebrating. And he is about to be 11 years old! We have a birthday to celebrate!

And look, we aren’t just celebrating his birthday and that David made it 4 years with FIRES. We are celebrating that our whole family made it through 4 years. Because it sure does take a toll on the WHOLE family. Not only did David make it- WE MADE IT. And that is something to be proud of. And honestly, we couldn’t have made it without YOU. Without our family and friends who have supported us and loved us, and prayed for us on this journey. It has been hard. We’ve had friends and family members who have lived this with us, and I just want to acknowledge that we couldn’t have done it without you. We have so many people that God has put in our lives- each and every one of you is a gift to us and we are celebrating you as well.

(Shout out to Rachel and Fabio- I couldn’t find a pic of you and the kids, but I love y’all and y’all belong in this pic collage!)

If you know anything about our journey, you know that David isn’t “supposed” to be doing this well. He is thriving. Doctors are impressed that he can walk, talk, and hop on one foot. To be able to read, write, and run around (though a little wobbly) and actually learn and improve is a miracle. We are finally in a place in time where David is happy, learning, and growing, because we aren’t adjusting medications all the time. Given, right now we’re in the middle of a medication adjustment, but it is just a short one (two weeks tops), and if it doesn’t work for him we’re just going back to where he was before. No more big adjustments for now, because it isn’t what is best for David. I’m so glad we’re finally at a place where we have some stability. He’s happy. I’m happy. Our family is happy. And we’re here, because of the grace of God and the amazing people he has put in our lives. Even through the pain and the loss, everything about David’s life with FIRES is nothing short of a miracle. Thank you all for playing your part in God’s amazing plan in our lives. We can’t wait to see what He has next for David.

Here’s to celebrating 4 years of FIRES and all of YOU!

8 comments on “Celebrating 4 Years of FIRES

  1. Susan Lewis

    I am happy David and you all are doing well. I hope he has a great birthday. You continue to be in my prayers. God bless you all.


  2. Harleen Bindra

    Hello Desirae!

    I am overwhelmed reading your post.
    I am currently in the ICU with my 14 year old daughter, battling what the doctors believe is the FIRES syndrome.
    I would really love to reach out to you, so I can connect with someone who has been on this incredibly painful journey.


    • Hi Harleen- first, I’m so sorry your family is going through this as well. We have some support groups set up on Facebook that you might be interested in. The first one is called F.I.R.E.S. (Febrile infection-related epilepsy syndrome). It is a parent-run support group. The second one is very new and is called NORSE.FIRES. FIRES is a subset of the disease NORSE (new onset refractory status epilepticus)- this page is run by physicians who are actively researching NORSE/FIRES and looking for treatments. There are a lot of new treatments for the acute stage (the stage your daughter is in) so I would definitely check out the NORSE.FIRES page as well as the parent-run support group I mentioned.


      • Harleen Bindra

        Thanks so much for your swift response.
        This is a long process of trial and error!
        God bless everyone who goes through this process. We are just praying that our daughter gets out of this with no further complications! πŸ™πŸΎ


  3. Harleen Bindra

    I am so glad your son is doing well! Prayers are all we need right now!


    • Harleen Bindra

      Hi Susan,

      I am currently in the ICU with my 14 year old daughter, battling what the doctors believe is the FIRES syndrome.
      Really grateful you set up this page and hoping I can reach out to you for support.
      Prayers are what we need! πŸ™πŸΎπŸ™πŸΎ


  4. Harleen Bindra

    Hi Susan,

    I am so happy your family pulled out of this and that your son is doing ok.
    My daughter, is currently in the ICU, battling what the doctors believe is the FIRES syndrome. We are overwhelmed with this painful process.
    Would love to connect with you for support and more understanding of this condition and what you went through!


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