Today as I drove to WalMart it took every bit of strength I still had to reach my destination. It was all I could do to keep on that path because what I really wanted to do was turn my car around. I figured I could reach the beach by 6:30. I could reach peace, Solace. God. I know He all around and with me all the time, but the beach is the place I feel the closest to Him. I was so focused on driving to where I was supposed to go that I actually missed the turn.
Six hours and ten minutes ago I finally got the news I've been waiting for with baited breath for 2 weeks. The same news I was waiting on when I posted 21 Foods and Counting. I finally got the results for Bradley's white potato allergy test followed by the results from the biopsies taken during his endoscopy and colonoscopy. Results that rocked my world yet again.
Sometimes people think that I'm overly protective or worrisome about the foods Bradley eats. I have to be very careful and selective down to the seasonings and oils used to prepare food. As a mom I'm glad I trust what I think is going on. We first introduced white potato back in January/February. He ended up being sick several times around then. Not knowing for sure if it was true illness or a result of adding back white potato, I took it out of Bradley's diet. I was questioned as to why and where my proof was that potato was making him sick. I explained my thinking and said after he gets better we will introduce another food, then if that is tolerated we will try white potato again.
We started white potato again in June (or was it May). The signs were so subtle, easy to miss. But I was concerned so I had his allergist check his allergen levels to white potato. Thinking the results would put me at ease. Either I was just seeing things that weren't there or I was on the right track in thinking something wasn't quite right. Either way we would know.
Today the results came back and we must now go from 21 foods to even less. We know for sure that we have to take the potato out. He is definitely allergic. Highly allergic in fact. His allergy to potato is almost as high as his allergy to egg yolk.
However that wasn't the only news. I also got to read his biopsy results from his scopes. Last October 2014 his scopes were clean. Zero evidence across the board. The time before that, June 2014, counts were 10 or less. Those were the scopes since his feeding tube was placed. Prior to the feeding tube, in December 2013, the scope results showed numbers of eosinophils around 45. June 2013 scopes were the highest to date with 85 as our number. Today it took me over 2 hours to realize. Over 2 hours for it to fully hit me what I had read from the results. The count in his esophagus is OVER 100. The highest ever that we are aware of.
With this result we have to make decisions. Take all new foods away? Blood work? Both? What? You see of those 21 foods we had reached, 6 of them have been added since October. Since his last clean scope of zero. That means potentially taking away all 6 of those foods. As much as he doesn't want it, his allergist is sending me an order for blood work so we can check those other items we've added. We are prepared to back down and only be at 15 foods (remember there are about 5 of those he won't eat so really just 10 foods). Not food groups, families of food, actually individual food items.
With these results we are now in a holding pattern. We cannot add anything new until we figure out what caused the problems this time.
Those are the cold hard facts. The things that we can't change. The card we've been dealt.
As a mom I've written of my feelings on this in the past. And trust me in his short 9 years there have been many. Bradley has been through more medically than many people endure in a lifetime. I would love to say that making the decision to move to a feeding tube in the first place was the hardest to deal with. Not for me. For me I knew that although it didn't seem fair, it was going to help my sweet boy. And it has. No for me, I think the past 2 weeks have hit me the hardest. Tears that fall without warning. Anger at the unfairness of it all. And yet, here is Bradley taking the news so gracefully. His response, "Oh. Okay." Shrugged his shoulders and went right on playing. The same boy who just 2 days ago went and hid in his closest because he was mad his friend didn't come over. He even told me, "You know mom. I get mad about the little things. But not really the big ones."
Oh I don't doubt that he is disappointed, hurting, angry, etc. But for now he is accepting and I'm going to take it. This amazing young man faces most of his days with a strength and courage I can only imagine. His only question, "Hmmmm....I wonder what I can put in my lunchbox for tomorrow. And no I don't want beans."
As his mom I worry. I worry that one day he'll get mad at it all. That he'll choose a path that is harmful to himself. Afterall when you have to watch videos to start each year such as More Than Sad, you can't help but be fearful that it could happen to your child no matter what you do.
As his mom I have my own choices to make. The choice to hide my tears or let them flow freely for him to see. The choice to put it all in God's hands or try to control things by keeping them to myself. The choice to face each day stronger or hide under the covers wishing it all away. The choice to go about seeming to be cheery or let others know what our life is like including how we feel.
So many choices.
I choose to show my faithful human side. I choose to let Bradley know how I feel so that he too can learn to express his feelings. I choose to put it in God's hands because despite the frustrations and set backs, we also have the good days; the blessings. I choose to allow myself moments of hiding under the covers so that I can face each day stronger. Hiding under the covers I can cry it out, get over it, and really let go so God can take care of us. I choose to share about Bradley's life and our experiences. I may never know that impact and I don't need to, but I've been able to talk with others going through similar experiences and offer words of support, a listening ear, and so forth.
So yes, we are 21 No More. Yes I am hurting for my Boo who was devouring french fries faster than they could be made. Yes I am angry that our society revolves around FOOD, FOOD, and more FOOD and so many don't realize how good they have it. I am angry that insurance doesn't understand this disease so we have to fight for coverage (remember out of pocket for Bradley's food (formula) and medical supplies alone cost us almost what I bring home in a month.) I think the lowest of the low doctors, the ones who couldn't cut it in the real world of medicine are the ones being paid by insurance companies to help them with their denials. Yes, I wish I could go and physically force them to live on solely the foods that are safe for Bradley for a week and then to go a week drinking (not through a tube but actually drinking) his formula. I'm sure some changes would take place then.
For those of you who don't quite get that. Those who don't understand how that can be possible, then I invite you to start on your lifestory. I invite you to learn more about our Heavenly Father and His Son Jesus Christ. Seek out someone you feel comfortable talking to that can help you grow. Jesus told us to go forth and make disciples. So there are many out there who are willing to help you embark on this journey that will lead to the ultimate destination. A journey that will give you comfort and allow you to be able to trust in the Father and walk away from devastating news with a strength and courage that can only be found through Him.
I leave you with this. Request for all the prayer warriors to lift up their voices. "For where two or three are gathered together in My name, I am there in their midst." (Matthew 18:20). Prayers for us to hold strongly to our faith. Prayers for us to face each day with courage and strength. "Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discourage, for the Lord your God will be with you wherever you go." (Joshua 1:9). Prayers for us to accept the path that God has placed before us. The life He has planned for us. Prayers for us to continue to lift up His name and keep turning to Him in our times of praise as well as our times of need.
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