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Category Archives: Living in Food Allergy Prison

Loving Little Man

Loving Little ManFear is a funny thing—and so are the emotions of a parent watching a child suffer.

I thought I had all the wonderful ingredients to be a special needs parent, as if it was some kind of recipe God puts together. Actually, I think that it is. You see, I was born a warrior. I have always been an advocate. I have never found myself to be fearful when confronting authority in the name of justice. When I see unfairness, my heart always screams, and my mouth is soon to follow.

On the flip side, I am deeply compassionate. That’s probably why I feel stirred to speak up for the downcast. I was one of the few students in junior high school who made a point to include and interact with a fellow youth group student with mental retardation. I saw her. I wanted her to know she mattered.

But then I had my own special needs child.

On the precipice of receiving diagnoses after reaching a significant crisis point, there are two choices in our flesh: a spiral into fear or a rapid bearing of fangs. In the beginning, separating those emotions is impossible. Wrapped up in all the pain are fierce anger, a sense of desperate protection, scary projections of what the future holds, and an overall desire to howl at the moon. When our children are touched so directly by the fall from perfection in the Garden of Eden, there is something so base, so animal, within us that wants to sit at the gate and beg the angel to let us back in the Garden and slam the doors shut again.

Within four months of his birth, my fair-skinned, redheaded little boy (Little Man) Read the rest of this entry »

 

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Why My Child Is Sad—And Why He Isn’t

Why My Child Is SadYou may relate to the food allergy piece of this—or the part about a child with special needs. Maybe you understand the mental health bit. Perhaps you struggle yourself. This is just one tiny scenario in our family’s journey. It may seem trivial, and when looked through the lens of one small moment, perhaps it is, but the message drawn from it is hugely significant and important. We all struggle with assumptions and forcing our good intentions, as well being misunderstood. It’s universal.

Today, one tired, squeaky, sometimes defeated little voice comes through in my experience. I believe his voice rings out, joining many others along similar paths. Little Man and I want you to know:

You are not alone.

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As she bent over to adjust the blood pressure sleeve, she asked him three times:

“Are you looking forward to school starting?”

She had to ask him three times because the first two times he looked down and wouldn’t answer. She had the best of intentions. She wanted to make my son comfortable.

I know the “goal” here is to have a 9 year old make eye contact, smile, act engaged in and enthralled by conversation with an adult, and respond appropriately with all polite words tacked on.

On his best days, he’s charismatic and very articulate.

I’m well out of range of the goal line right now, however. I really am.

Read the rest of this entry »

 

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Lunches and Little Friends: The Deep, Deep Love of God for Us


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Today, I went to pick up my youngest child from his school a few minutes early to get him to an appointment. While there, a school staff member stopped to tell me a sweet story. I had to cover my mouth and hold my breath because I almost dropped to the floor in tears.

My 8 year old, Little Man (LM), still sits at the peanut-free table at school. His food allergies are all gone except for low levels of skin testing response to peanut showing up now and again. He can touch it, sit near it, and smell it. He has no desire to eat it. And really, I’m not forcing it. When you put previously severe allergies together in a cocktail with obsessive anxiety, I really don’t see the point of pushing too many adventures into freedom at once. He already eats all tree nuts, dairy, and egg now after years of being allergic to those as well. Big, brave, victorious steps—each and every one of them.

So, four years into school, when I asked him this year if he wanted to finally give up the security of the peanut-free table, he wasn’t sure. Starting school was enough to process. I told him it was fine that we ease into change. When you have lived so long in fear of foods you put into your body threatening to harm you severely, you develop some security blankets. One of his is this safe-zone cafeteria table.

In my mother’s heart, I was ready to toss this chain off his neck last year. I wanted to open up his social world. Not many kids sit at that table. They take turns being with him if they buy lunch. Otherwise, he can often be alone. For an extreme extrovert, that is a special form of torture.

But then in came one of his little buddies. This child and Little Man were sitting back-to-back, chairs pushed against each other, facing into separate tables—one peanut-free and one not. The staff member initially thought one was not giving the other space—a conclusion I might easily make myself. As it turns out, when she told them to please move a bit apart, both boys turned around and told her that it was okay because they did this on purpose. They knew they had to sit at separate tables, but if they sat back-to-back, they could hear each other and face other friends and yet still be in each other’s world. They cleverly adapted their circumstances to find a way to still hang out. And she affirmed them for it.

Wow.

I drove for 45 minutes to the appointment feeling the full weight of that—and the complete brilliance of it. And the simplicity. It made me think of my dogs when they were new puppies in our home; they would push their tiny furry bodies against matching ends of the crate to touch each other through the bars. To get warm. To know companionship and comfort.

It’s an incredibly powerful thing to see what lengths the human heart and spirit will go to in order to find and keep that connection.

Another one of Little Man’s close friends has spent the past several years getting a school lunch as often as he could to sit together so LM wasn’t alone. When he can’t sit with him because he didn’t get a cafeteria lunch (approved as peanut-free), he makes sure to let LM know he’s still thinking of him even though they can’t sit together that day. He always offers a smile and encouragement, even a hug.

When she shared the same school with him, still another friend regularly checked on Little Man to make sure someone was with him at lunch, if possible. Her heart looked out for his. She understood the potential isolation of a separate table and took care of her friend. She shepherded, protected, looked out for him. She is 8 years old.

Not only is this a culture of kindness I so appreciate in these 7 and 8 year olds—and don’t we all need to see more of that: kindness in the next generation?—but it also reminds me that God does that for us. Wherever we are, whatever our struggle, handicap, issue, frustration, trial, or something otherwise holding us back, He pulls his chair up to us right where we are. He is with us. We may feel lonely in our trial or circumstances at times, but He is always looking out for us, caring deeply that we have someone to sit at the table with—Him. If we talk to Him and trust Him, we will always find Him there to rest our backs upon. He keeps us company.

I also see that, just like Little Man, sometimes we are unable or unwilling to let go of something, to trust, to take a great step forward in faith. And God is still there, providing for us, patiently coming alongside, gently coaxing us toward that new step of faith. LM wasn’t ready to leave the table, so God sent his friends to sit with him until he was ready. They loved him through it.

The Apostle Paul reassures us that nothing can separate us from the love of God—not our rational or irrational fears. Not our need to hold on to something. Not even the few places we struggle to trust. If we yield to Him and ask Him, God’s love is a powerful force to sustain us. Little Man’s own inability to fully let go of the peanut-free table did not keep him from the Lord’s presence. God sent LM reinforcements so he didn’t have to go it alone.

Is there anything more beautifully reflective of a deeply loving Father than sending His smallest sheep to care for each other?

I truly can’t think of anything more precious, and I have much to learn of God as I watch the youngest of His flock.

Romans 8:35-39, Apostle Paul speaking

Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? As it is written:

“For your sake we face death all day long;
we are considered as sheep to be slaughtered.”

No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.

 

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Slice of Freedom: Eating Pizza for the First Time

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I was at a meeting at the dance studio the first time he said, “Can I have some pizza?” I had to ask him to repeat what he said because I was incredulous. He had been set free, through prayer, of his dairy (and other) allergy for a while now, but fear still sometimes prevented him from trying to take in too much. He had been medically tested to back up (for school purposes) what happened through prayer, and we took a cautious approach, introducing a small amount at a time. A tiny smear of cream cheese here, a piece of shredded cheese there. But pizza had not been of any interest to him up to this point.

Backing up…a lot of people who are bold in their faith of healing prayer encouraged us to have him chug glasses of milk. Actually, we had him rub it into his skin first, on the day of the prayer, and then let him swallow a bit of milk. At that point in time, before prayer, he would break out into hives just from his hand touching spilt milk and projectile-vomit any swallowed milk. On the day he was prayed for, he was fine on both counts, but we did not press him to take in more than he wanted to. And while other people’s faith seemed greater on our behalf, and I’m so thankful for them, we ourselves were only just starting to not clench too hard to the epi pen in moments like this one. For better or worse, we needed more faith history in this. And for a while I beat myself up for not wanting to feed him a dairy-only diet for the days following to prove something to myself and to strengthen my faith, but I didn’t need to prove anything to God. He knew my slow unclenching of the epi pen and testifying to each brave new step we took was me yielding, submitting, and learning to trust Him more. Had I rushed into it, I would have missed steps along the way where I needed to learn more about Him. Others may embrace this boldly because their lessons were already learned. For us, there was a story of trust and deep faith being written, and we were the main characters in it.

Back to where we were on the day that changed dietary history in our home with just a simple slice of pizza: We had broken from our event planning meeting (for an upcoming fundraiser) to order some pizza. And Little Man decided this was the day he’d like to try it. I have to admit, 7 months after being released of these allergies after years of them ruling our lives, my first thought was to look to see if the epi pen bag was with us. Knee-jerk reaction. If that shows a lack of faith, I guess you could consider me still a work-in-progress then. I’m just being honest. We lived in fear for years. We were still pushing fear out the door. God had taken it, but we still thought we saw the phantom of it taunting us for a long time.

So, with two of my good friends as witnesses, Little Man took a few bites of that cheesy goodness. Nothing. No belly ache, no vomiting, no hives, no difficulty breathing. I actually think we started with crust, but he convinced me to move on to the cheesy part—my reluctance and not his. This is how I knew in that moment that God was offering peace. Because my son not only expressed interest but was peaceful and eager to ingest something formally seeming like poison to his physical body.

So, I think we let him have two pieces that day. I’ve never seen a kid so happy about anything—not Christmas morning, not a vacation, not the swimming pool opening for the season. He had just discovered pizza at 7 years old for the very first time, and he was head-over-heels in love.

What followed were about 10 days of nonstop pizza eating. I admit that I indulged it. I gave it to him anytime he wanted it: at breakfast, Ellios frozen pizza, Dominos, local pizza places, etc. Every few days we tried a new topping. He was caught up in some kind of heavenly experience. He talked about it at bedtime: “Mom, what kind of pizza can I eat next? Should I try sausage or pepperoni?” It was so fun to watch.

But what also followed were 10 days of his body learning to process the pizza. Mostly our house just needed a lot of air freshener and open windows in those days. I’ll leave it up to your imagination. He wasn’t sick. I liken it to a new baby trying a new food, and for a few days, the bowel does some funky things with it. I told my kids to be patient, that this too shall pass (excuse the pun), and that this is an amazing victory in our lives.

It also meant not packing a special lunch to go to pizza birthday parties with. It opened up a whole new world.

What can be celebrated in your house today? It might not be of this magnitude every day. But any time we can do something we couldn’t do before, it’s an amazing moment for thankfulness. Running that marathon (or half-marathon). Strengthening those abs. Conquering that Rachmaninoff piece. Having something taken off an IEP. Or going off the IEP altogether. Getting through that tough year with a teacher/instructor you didn’t jive with. Training those puppies. Learning better food intake self-control. Choosing not to rage in traffic. Making that career change. Choosing not to gossip when the rest of the room is.

In our family, we thank God for these moments because we feel incapable of making such amazing changes in our own strength. We feel it all comes from Him. We are responsible for our choices, but at the end of the day, we like to look up to thank Him for guiding us.

Which victory in your life can you celebrate today?

James 1:17, James, brother of Jesus, speaking

Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.

Isaiah 53:5, Isaiah the Prophet speaking

But he was pierced for our transgressions, he was crushed for our iniquities; the punishment that brought us peace was on him, and by his wounds we are healed.

 

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