You know that moment when you are getting on a new roller coaster and excitement and sheer panic set in right before you feel the gears start to move? That’s how I would probably best describe the last three years of my life. When we found out we were pregnant we were ecstatic. After the tiredness and nausea wore off, the bumps began. Twice a week fetal heart rate monitoring. Monthly visits to the perinatologist. Diagnosis after diagnosis after diagnosis. Delivery at 37 weeks by induction.
I think we figured once our son was born, he would be safer outside my body. We definitely weren’t prepared for the plan that God had for us. 10 weeks after he was born, we ended up in the emergency room. The doctors were checking for meningitis. They couldn’t figure out why a 10 week old would have such a high fever. A month later, we were back in the emergency room and the doctors were back to checking for meningitis but could not find the cause for his high fever. Now at this point, my husband and I were a wreck. Our son had literally become the bubble boy because we were so fearful of germs coming in contact with our infant. And I completely isolated myself, which did me no favors as a stay at home mom.
The fevers continued. Month after month after month until we finally saw a specialist that diagnosed him with Periodic Fever Syndrome. An inflammatory disease that is in its infancy when it comes to research and origin. Now at 2 1/2, our son has had 17 fevers not related to normal childhood illness.
I completely through myself into doing everything I possibly could to help him. I had this little baby, with these 103/104/105 degree fevers and the only option the doctors gave me were steroid shots. I did research and joined support groups and did everything humanly possibly to avoid the next fever. Night after night we would pray next to his crib for the Lord to just take this illness away. As the stages of grief set in, I would try to keep myself busy to avoid how I was feeling inside.
Since I was nursing, I completely changed my diet hoping that if I avoided inflammatory foods it would push his fevers out. We started chiropractic care three times a week to help reduce inflammation levels in his spine. Vitamins and supplements became the new norm. I started baking…. a lot. Coming up with my own recipes or tweaking others. That’s how I found Einkorn flour.
Now I’ve reached the final stage in this whole process. Acceptance and Hope. I’m thankful that the Lord never left us, even when some days I felt like He did. He brought so many new people into my life to help me along this journey my family is on. I’m thankful for them and feel extremely blessed to have them in my life.
I created Tiffany’s Tightrope because I knew that I couldn’t have made it through my journey without the moms in my life who were walking their own tightrope right next to me. With all the things I was balancing or struggling to balance in my life– I knew they were going through the exact same thing and it helped to have a tribe of women to lean on. A tribe of mothers.
So this is my tightrope… Tiffany’s Tightrope.
What tightrope do you walk?