Over the course of this particular day there have been quite a few things that have come my way…coincidentally. There have been certain things “confirmed” today that I cannot even truly explain to most anyone. Perhaps the only people who will truly understand the magnitude of these coincidences will be those who have walked very closely beside me through this entire journey – and perhaps many of them will not even truly understand my belief in what I have learned today. Still, I know, very deep inside of my very being that these things are true.
For 18 months I have had this very real nagging sense that every decision we would make regarding the twins diet (as well as vaccine schedule) would determine their physical and mental health. Beginning with the first food fails of rice and sweet potato at 6 months old; I had this gnawing sense that continuing with trials (like our doctors wanted us to) would potentially lead my children to the autism spectrum. This is not something that I can be sure of. There is no way for me to prove it or to know for certain. I am not saying that. I am simply saying that there has been a very specific and very real sense of this deep inside of me. I have shared this with my husband all along the way. For a long time he could not talk about it. As time went on and we watched LittleR engage in certain behaviors – such as banging his head on the floor for no apparent reason – this topic became even more difficult to talk about.
Today during occupational (feeding) therapy I received some kind of confirmation of my deep seeded feelings about how autism could relate to LittleR. I was explain to the therapist that he is just too busy to sit and drink his formula, but that if we strapped him into his car seat to drink he would settle down enough to do so. She began talking about this being a sensory issue. She went on to identify a bunch of other sensory issues. I nodded and repeatedly said, “Yeah – that’s LittleR.” Making sure not to offend me Miss R. said, “I’m not saying I think he’s on the spectrum or anything.” “Wow,” I thought, “I didn’t think you were but wow.” I asked her if ASD kids have these sorts of sensory issues, to which she answered, “Oh yes.”
Honestly I almost felt like I was just punched in the gut. This felt an awful lot like a confirmation of my fears. It makes every step from here on out just as important as every step that I have taken to get to this point. I asked Miss R. what she thinks would have happened if we had just kept going feeding them foods back at 6 months. She agreed with me that today we would likely be looking at something entirely different – maybe autism – who knows.
Because of my own battles with food, I have been becoming painfully aware that food could indeed cause a whole host of neurological symptoms. By the time I actually gave in and looked into the GAPS diet, this “Gut and Psychology Syndrome” did not seem like a far stretch to me at all. Interestingly, as the diet was continuously brought before me in various “coincidental” ways, I was unaware that it was originally developed by a British neurologist to treat autism. I cannot count this small fact a coincidence in relation to my instincts about autism and my children.
At this point I feel such a heavy responsibility regarding our next steps. With all that I believe as being confirmed, I am realizing anew that this is so much bigger than finding a list of “safe foods” for LittleM and LittleR. The next steps we take – making the impossible decision to take this very slowly – even denying my precious little ones the basic desire/right to eat food – fighting off the urge to just let them have a bite of this or a piece of that – THIS IS CRITICALLY IMPROTANT TO THEIR HEALTH – THEIR FUTURE – THEIR VERY BEINGS.
Wow, God, what a HUGE responsibility. I am so relieved that I do not have to do this in my own strength. Honestly – just looking at the protocol that we will need to adhere to for this GAPS program feels just too huge. Thank the Lord that he is my strength – that I can do all things through him who strengthens me.
As a side note:
There are currently a bunch of FPIES mom’s who are bringing their children to New Jersey to the Pediatric Center for Rare and Complex Diseases to see a research doctor who is conducting a study directly related to autism. Dr. J. is not trying to link FPIES to autism, the FPIES participants in the study are actually being used to gather data on non-ASD children with similar food allergies (if I understand correctly). Still, she is very educated on FPIES and is being considered an expert on the subject by some. Dr. J. personally states her opinion that certain vaccines may be contraindicated for the FPIES child. Besides that confirmation of my own intuition, I cannot count this autism link to FPIES as a coincidence.
Back to today:
I have received a clear and repeated message from God concerning this situation with the twin’s health. This line – which as become my mantra – first came to me this past summer. There was a woman, I., who joined the mom’s group that I lead for my church. At each group meeting each mom is asked to chare her high and low points from the previous week. During the second meeting, I shared a high point and then as you can imagine my low point was somehow related to the twin’s condition. A few days later, I. sent me the following email message:
I have been praying for you and your children quite a lot lately. You have to continue to pray and not let the enemy put negative thoughts in your head. The Lord will do amazing things. I feel that you are tired, weary. I sense through prayer that you are tired emotionaly and spiritually. You know the Lord Jesus can do miracles; however, you often wonder if He will performed one in your children's health.
It might seem like there is a dark heavy cloud over you and your family- wherever you walk the cloud follows you; but that cloud will bring rain....rain of blessings! The sun will come out and you will know that He is God. Please continue to PUSH (Pray Until Something Happens) and do not give up. It is hard and overwhelming but you will soon see the Light at the end of the Tunnel.
For you...Psalm 46:10
Believe me when I say, there is always a purpose. If God brings you to IT, He will lead you through IT.
I am blessed to have met you. I want to be part of that miracle!
“You will soon see the light at the end of the tunnel.”
I have held on to this promise through my darkest moments in this journey. What’s more, this message has come to me from various different sources – repeatedly. Each time I would receive this word from another avenue, the promise would be reinforced in my heart.
As we have ventured into this new and VERY alternative treatment for the twins I have been careful to move when I hear God saying move and wait when I hear him tell me to wait. My friend across the country has been right there – in the same spot – further confirming God’s voice through each of us. And now, days into this crazy leap of faith, we see the children responding well. We see them (so far) tolerating REAL FOOD (bone broths). All the while we are praying and hoping that this is it – that this is the beginning of the end.
Tonight I met a friend out to chat and catch up. One of the first things she asked me was, “So how are the broths going?”
“I think they are going well,” I said. “They have been on chicken, beef, and lamb, and yeah – they seem to be doing well with them.”
“Wow, that’s really great,” she said – she was smiling. “So do you feel like this is like the light at the end of the tunnel?” she said.
I was really stunned when I heard THOSE words come out of Tiffany’s mouth. I am pretty sure she thought that I was angry with the cliché. I think I answered back something like, “are you serious?” I know my tone was precarious. I honestly wasn’t sure if she was repeating the mantra back to me or if she had no idea of the significance of the term in this journey. The answer was the latter. Tiffany had no idea.
I sat there, shocked, for a few moments. I was unable to articulate what I was thinking or feeling. I felt as though I might cry or call out yippee or something like it. The truth is, I have been feeling like maybe – just maybe this is the light at the end of the tunnel. Tonight that changes though. I believe that I just got a little bit of confirmation from above.
As we were sitting there chatting my cell phone rang – it was the Vitamin Shoppe calling to let me know that the probiotic I had asked them to get WEEKS ago just came in. Honestly I forgot that I had even asked about it. Perhaps this timing was more of God’s timing as I have been hunting high and low for a safe probiotic for our FPIES babes. Coincidence? I don’t see how.
Just this afternoon we decided to take another step of faith to prepare our family to share meals together. We decided it was time to bring the dining room table back into the dining room. This may seem very small, but this was truly an exciting moment for Shawn and I. We have arranged our entire lives – small things that most people take for granted – around our children’s needs. All the while we were all missing out on “normal” time spent with one another.
I won’t pretend to know what is on the other side of this. God has not told me that my children will be completely healed. What he has said is that I will see the light at the end of the tunnel. I believe that there is an end to this, but I know that He is God and I am not. Whether the children will be completely healed or whether they will have a short list or even a long list of foods that are safe – I do not know. What I know is that there will be healing. There will be an end to this impossibly heartbreaking existence. It WILL be ok.
We still have a long way to go. And now we are tasked with moving forward – slowly, carefully...boldly.