During this journey there has been one lesson I have learned loud and clear. It is not that I got an A on the first test – nope – not even close. I failed the first test miserably. Even after roping in a failing grade, I kept right on going trying desperately to make 1 + 1 = 3. Eventually though, I realized that I was looking to the wrong source for the answers to the equation. I was relying on my own wisdom, my own research, and my own efforts and power to figure out what to do next for LittleM and LittleR. At one point I decided to heed the message that had been coming to me again and again… “be still.”
Who me? Yikes. I am a get it done type of person. My signature tag line on any cover letter I send out boasts my “just get it done work ethic.” I thrive during crunch time when many simply panic. Waiting on someone else – someone I couldn’t even see – was no easy task. In fact, it took me a number of months to truly be able to wait on God, but since that time I have realized that waiting on God is such a comfortable place to be. In learning to let go of my children (placing them in the hands of the Father), I have experienced overwhelming peace. I have learned to listen for his voice. I am still learning when and how to follow the promptings of His voice, but if not for these circumstances I would still be scrambling to figure it all out on my own. I would still be beating my head against the wall – in despair at not being able to nurture and nourish my children to health. Instead, over time, I have learned to surrender my worry and my fear, and allow the Father to lead me to the next step and the next bit of research, the next practitioner, etc.
Most recently, through a journey of interesting twists and turns (unmistakable navigating by God) we have arrived at some exciting and hopeful next steps LittleM and her feeding difficulties.
This journey has led us to/through: 3 occupational therapists, a chiropractor, a maxio facial surgeon, an ENT specialist, a pediatrician/lactation consultant who specializes in tongue tie, an affiliation of medical professionals who specialize in tongue tie. We also have appointments scheduled with: a pediatric neurologist, a chiropractic neurologist, and the Hershey Medical Center for a barium swallow study.
Wait a minute…what was that last one? A BARIUM swallow study. OH GREAT! This one is scary. Because of LittleM’s FPIES (affectionately termed a “universal reactor” by her primary doc), I have been putting my foot down on this study for months. Each time it has been mentioned by a medical professional I have said, “No, we don’t know if she will react to the barium and how far back it will put her treatment.” So what changed? Actually NOTHING. LittleM had made no progress in swallowing since we started this journey. With months of occupational therapy and a number of foods to try, her skills were actually getting worse.
So, when our practitioners seemed to split – leading us in two completely different directions (surgery for tongue tie vs. alternative therapies to release the tongue)…I began praying. We were headed to Maine for 2 weeks of working on my sister’s wedding and I would have no opportunity to keep working on this while we were there. I had no choice – I prayed that God would just take over. I prayed that he would open the right doors and close the wrong doors. Just a couple of days after I “gave it to Him” the calls started coming in.
READ ALL THE DETAILS HERE OR SKIP TO THE PEACE THAT SURPASSES UNDERSTANDING BELOW
Hershey Medical Center called first. They didn’t just call to talk with me about the studies available, they called to tell me that the test had been scheduled. OK GOD. I guess this is an open door. After we got back from Maine, I started doing my due diligence and called Hershey to check in on what test they were planning. To my surprise it was not the barium free nasal scope study, it was the barium swallow study. I was instantly sick to my stomach, and couldn’t understand why this was the door God was opening. I KNEW this was not the right thing for LittleM – that this would not support the healing protocol that they are on. What could I say though, this was a door that I had not opened – I had to trust that it was God, but just to be sure I prayed that He would keep opening the right doors and closing the wrong doors as I continued on with my responsibilities as a mom. I called Hershey and insisted on speaking with someone who could tell me why this test was ordered and not the one we were asking for. The speech intern that called me explained to me that the other study would not show us anything that was going on in the oral phase of LittleM’s swallow. This one was the only one that would even look at what the tongue was doing. Ok. My final confirmation came when I attempted to reschedule the test date to a more convenient day of the week. Not only did it reschedule for a nearby date, but it was the most convenient date on the books. I had to concede that this was God.
I emailed our team to let them that the barium swallow was ordered and pending. I quickly received an email from out OT with a couple of words of warning about the. She did not think we were going to get the answers we needed from this study and that it would expose LittleM to the barium and radiation for little to no answers. Honestly, I was a little put off by the email for a moment. I was thinking something like, “well this is GOD not ME.” That feeling really lasted just a short time before I realized that this could all be part of the journey. I decided to continue on with my job of due diligence and follow through with all of the suggestions she had given me. I was praying all the while for God to open and close doors. I was NOT going to plow through any door or simply say no (closing any door) on my own.
As the events continued on, it became more and more clear that God was the one at work here. I called Hershey asking them to schedule us with the practitioner that the OT has suggested. The scheduler wanted me to keep the professional we has since they were both skilled at their jobs. Not wanting to push through the wrong door I just sort of went with the whole conversation (not at all like me!). In the end I ended up asking for the first practitioner to call me instead of just rescheduling with the other one. Our OT had also recommended that I discuss the study and what we were trying to see with them to see if they even thought it would be possible. The scheduler sent an email to the first one asking her to call me. She also copied the other professional on the email just so that she would be aware of what was going on. As it turned out, the second professional (and the one our OT thought would be better suited to helping us) called me back by accident – she had thought the email was asking HER to call me.
We ended up going over everything. She agreed with the OT that the study was most likely not going to show us what we wanted to see. She hesitantly asked (almost as if she was out of turn), “how would you feel about coming in for a speech therapy for feeding consult? “
THE PEACE THAT SURPASSES UNDERSTANDING
There it was. It was as if a burden was instantly lifted from my chest. The peace that surpasses understanding. And I finally saw that God was not leading LittleM to something that seemed to counter all that He had been leading us to before now. He was leading us to the right moment, to the right therapy, to the right person. What he needed from me was complete faith AND obedience.
Those steps of faith were not easy to take, but I was prepared to follow His leading all the way no matter where it was going (even we ended up in radiation department of Hershey Medical Center).