I'm going to get real.
I'm hoping this post is therapeutic for me... and maybe even for many of you who need to know that you're not alone.
Overall--Food allergies have been a blessing in our lives. We have received so many blessings and learned so many things we never knew we always needed to learn.
Managing food allergies is hard. I don't know how else to say it. Yeah, it's become our normal life. It's just what we do, but we also have to navigate the outside world. That can be, frankly, terrifying.
It was worse when my son was a toddler. That oral stage was killer. For lots of reasons. There were the normal "terrible toddler" things, but there was also me trying to figure out how to be an advocate, be assertive without being offensive to others, and a whole host of social struggles. It's freakin' hard. And it's really hard when you feel very alone in it all. My husband is wonderful. He's my better half, but like a lot of dads, he doesn't know the pediatrician's name, or the allergists, or the teachers, or what we're having for dinner, or how to make the food, the kids favorite colors, who their teachers are or how to go grocery shopping for ingredients... It's not his fault, really. He has a lot on his plate that he takes on so I don't have to worry about it. That's what makes us work, right?
But I've realized something.
This is my Gethsemane.
It's a very private, very personal struggle that I literally cannot share with anyone else. I can't even share it with my son in a lot of ways.
Yes, both my husband and I were there when our son was born unable to breathe, when he had his first anaphylactic shock, but ultimately, figuring out our new life fell on my shoulders. My husband has been 100% his advocate alongside me, but the day in and day out struggle part? That's on me.
It's a very lonely struggle.
Now, before I go on, I need to clarify something.
The last thing I want is for my son to feel like he has been a source of stress for me. I want to say, first and foremost--HE IS NOT A BURDEN TO ME.
I will gladly walk through fire every day if I have to to keep him safe, educated, healthy, and to help him figure out life. Just like I do for all of my other children.
But just like every other mom, that load can get a little heavy sometimes. Regardless of what causes that struggle. That is in no way the child's fault.
It just is what it is.
That's part of the calling of motherhood. Something I accepted to do before I was even born. And while, like Christ, I sometimes wish this cup could be removed from me, I know that I must pass through it and that we'll all be better for it.
Like I said, This is my Gethsemane.
Okay, so now that's out of the way, I need to tell you about something that happened a few weeks ago. It was a roller coaster of emotions, and it's something I need to share with you.
For the entirety of my son's life, I've longed for the day the doctor would say, "Hey! His numbers are so low on this particular allergen that we could challenge this." and have him outgrow even one of his allergies.
I never thought it would happen. I've watched it happen to others, usually when their children are much younger, but about a month ago, we found out that he is ready to challenge 6 different tree nuts of the 8 that he's been allergic to (the other two are still deadly).
I was elated!
I was emotional...
I was terrified.
The terrified part didn't manifest itself right away. It was when I went to the grocery store to buy the walnuts and pecans that it started to settle on me.
I mean, for the last 13 years, I've lived in this paradigm of "ALL NUTS ARE SCARY" and I wouldn't even dream of touching them, let alone feed them to my son. I found myself in a great chasm of turmoil between our new reality and our old one. I don't even know if it's our old reality yet. We still haven't even challenged these foods yet, but the emotion hit me like a tidal wave. It totally caught me off guard. I didn't know exactly how to navigate how I was feeling. I reached out to other moms who had gone through this, but still haven't heard back.
There was that old, familiar feeling from the early days.
That dark aloneness.
I wondered if I was normal, but also soon realized that, of course, it's normal when your paradigm is in a major swing.
The next day we went to a church party. I had the thought to ask my son about his epinephrine when we got there. Alarmed, he told me that he had forgotten to grab it. So I told him and my oldest daughter to hang out and watch the other two while I ran home to grab it and some dinner for him because they were serving food at this event. On my way out the door of our home, I scoured the pantry for a quick dessert I could give him along with his meal. Got back to the party, epi and meal in hand, and we all sat down to eat together. Per usual, he ate right next to me for safety reasons. He was tearing open his dessert when he noticed it looked smaller than usual, then tried it and said it was gross, so he didn't eat anymore and put it away. I got up to talk to a neighbor when, about 5 minutes later, he and my oldest daughter came over looking upset. I couldn't tell if he was just emotional, or if he was reacting, so I went to him and asked him if he was ok. When he looked at me, his face was splotchy, his eyes were watery and bloodshot, and I could tell that he was reacting to something. I asked him if he had touched anything and then rubbed his eyes, and he said, "Mom, it was the dessert."
I was shocked!
We had had that dessert a million times, but it was then that I realized that I hadn't double checked the package. He handed it to me and, sure enough, it had milk and eggs in it. I HATE it when companies change their ingredients.
My ears felt hot as blood rushed to my brain. Adrenaline flooded my body and I jumped into first response mode, trying to stay calm, but my hands were shaking, and I just wanted to cry.
I made a mistake...
...and now he's suffering.
He had his epi ready to go. I told him to self administer while I called 911, took note of the time because epinephrine only gives relief for about 15 minutes, called my husband who was at work, and had our bishop (pastor), take my car and drive my other children home. My husband took the rest of the night off and rushed home.
This reaction was a scary one for me. It was so reminiscent of his first ever reaction, only this one was even scarier because of how medical personnel handled it.
My tears are flowing freely recalling it.
We have had several reactions that required an epinephrine injection and a 911 call. Every time, they took us very seriously and I was super prepared.
This time, however, I felt so unprepared. All I had was 1 Epi--I usually carry at least 2. I had no zyrtec, and I had no rescue inhaler.
Despite my telling them the time of injection, they kept clarifying that he was not reacting to nuts and did not give him another shot of epi on the ambulance--even when his reaction started up again "because his vitals still look good." I couldn't believe it.
Anaphylactic shock is anaphylactic shock, not matter what you're reacting to.
We got to the hospital 25 minutes after epi was administered. He was starting to react again. The ambulance told ER staff that he needed an IV. The nurse took us through the quiet ER into his triage room.
Still not another dose of epinephrine.
I was very surprised. You don't need a doctor's order to administer epinephrine.
The doctor didn't even come in to see him for another 20 minutes.
When he did finally come in, he told us he needed an IV (duh).
Another 30 minutes passed.
Nobody came.
another 15 minutes...
He was reverting back into shock.
He had turned red from head to toe, had hives everywhere, said he felt like his back was getting stabbed by hot needles all over, and he started to shiver and chatter his teeth. I put my coat over him and tried to keep myself calm. I didn't want him to be scared that nobody was in there helping. His blood pressure dropped from 100/64 to 80/32.
I opened the door and told the nurse that his blood pressure was dropping and that he was in shock.
I kid you not, maybe she was trying to keep me calm--it just made me angry--she walked purposefully slowly to the room and told me that the settings were for adults so that's why the alarm was sounding. She was saying this about a 13 year old boy who is 110 pounds.
I told her he needed his IV. She said that they hadn't received an order for that yet (45 MINUTES AFTER SEEING THE DOCTOR AND STILL NO ORDERS?!).
However, within 5 minutes, the IV cart came in and he was getting his IV--which is another traumatic thing for him (different story, but he's terrified of IVs).
Waiting to give him the IV and allowing him to go into shock like they did was cruel and dangerous.
From the time he administered his epi to the time they gave him ANY medication was just under 2 HOURS. It took him days to recover at home. We have never had a more traumatic experience with anaphylactic shock than this one outside of his first one (Only because it was our first one--hospital staff acted amazingly on that one.)
I was a mess.
The next morning I attempted to talk to my husband about how hard the week had been, how hard the experience at the ER had been and, while he was compassionate and encouraged me to write a letter to the hospital, as a first responder himself (police officer), he was also very matter of fact. "Well, he's ok now, and that's what matters." Trying to calm me down, probably, when what I really needed was for him to say, "I'm so sorry this week has been so rough. I'm so sorry the last 13 years have been so hard on you. I wish I could share that load, but I love and appreciate you and recognize that you're keeping our son alive and well."
Life isn't a perfect novel. It's hard. We have different personalities and different struggles and we have to give grace to each other once in awhile.
I feel like I should point out here that my husband is truly, the most remarkable and wonderful husband and father. Every day I look at him with adoration because he is just so truly amazing. We all show our love in different ways, right? He tries to protect me from big feelings. What he doesn't realize is that I need to process, and sometimes that means I need to cry for awhile.
And I need lots of hugs.
Anyway... it was rough. This is just one example from one week of our life. If I wrote about every single emotional ride I've been on because of food allergies, I would have a library of novels. It's part of the gig.
I can't tell you how many times I've wished that my son didn't have to suffer. How many times I've wished that this wasn't his burden. How many times I've wished that he could just get a break from it for a minute. That's one thing that he will never get that I can have. A break. And I have to remind myself that he doesn't know any differently.
Food allergies come with a lot of fear. A lot of heartache. A lot of education. A lot of growth. A lot of love. A lot of compassion. And most of it just comes with the territory. We all have hard things. This just happens to be one of my hard things.
I'm grateful that we're here to talk about it and grateful for the blessing it can bring to someone else.
Have a blessed day.
Linz
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