I turned 35 last week. It’s not a “big” birthday, but it was big to me since it’s my first birthday since his diagnosis. I love birthdays. In our previous life, we would have gone out for beef fajitas with a side of queso with guacamole followed by a trip to my favorite cupcakery for a chocolate cupcake with vanilla icing.
This year was different. I spent part of the afternoon crying a small puddle of tears on my kitchen floor as I mourned my son’s loss. It grieves me so much deeper than it does him since he barely remembers any other life, but I remember. I remember being able to eat anything without reading a label. I remember the deliciousness of a hot flour tortilla. I remember the days when I’d watch my little guy devour a donut.
As I wiped away my tears, I sent a message to some supportive friends. To sum it up, I told them that I needed to be real for a few minutes and then needed to buck up and move on. I try to be positive in front of my son as much as I can for three reasons:
- What else can I do? There’s no cure. He’s got celiac. That’s life.
- I NEVER want him to feel like a burden. I would take him a thousand times over with a thousand things worse just to have him as my child.
- And speaking of, it could always be worse. We just have 1 thing to deal with. It really could always be worse.
I’ve been struggling a lot with anger lately. I feel so many days like I am barely holding myself together, and if I pause for more than a few seconds to think about things, I will start to fall apart. I heard a phenomenal sermon on Psalm 13 this Sunday that startled me awake. David questioned God and asked him, “How long, O Lord? Will you forget me forever? How long will you hide your face from me? How long must I take counsel in my soul and have sorrow in my heart all the day?”
I am fine with never eating out again if that’s what it takes. I am fine with being labelled “obsessive” or “nutty” if that’s what it takes. What rips my heart out is having to explain to a 4 year old that he’ll never outgrow this. He will still have celiac “when I’m big like Daddy.” He will still not be able to share pizza and cake at birthday parties. The very worst is the moment he realizes he’s going to need a blood draw. With the last one, it took me, his dad, and a strong nurse to hold him down as he screamed. He pleaded with us not to let them draw his blood. He begged us. He wailed, “I HATE THIS!!! I DON’T WANT THIS!!!!!!” It was literally everything I had in me not to break down in that room. My sweet love, I hate this too. I hate that I can’t do it for you. I hate that this will always be your life — no gluten and a needle in your veins. A cold steel needle into your perfect chubby arms. And I can’t make it better. It eats me alive.
I have found 2 friends who are willing to walk beside me and read through a book by C.S. Lewis called “The Problem of Pain.” I’m struggling in a way I never have before. It’s easy for me to accept suffering for myself, but to watch my son hurt is causing a crisis in me like I’ve never had before. I need to be able to make enough sense of this mess in my head that I can stop being angry, that I can stop crying, that I can get to the point where I can get to the end of the Psalm: “But I have trusted in your steadfast love; my heart shall rejoice in your salvation. I will sing to the Lord, because he has dealt bountifully with me.”
Things I believe:
- God is good.
- He loves me.
- Though I don’t feel like it, I have not been abandoned.
- I don’t have to like celiac any more than any other illness.
- Celiac isn’t a punishment.
#5 is the one I struggle with the most. I cry to God so much, “Why HIM??? What did I do for him to deserve this???” The answer is nothing. Celiac is not a punishment. It’s like any other illness; it’s a terrible piece of this imperfect world we live in. But it is not a punishment.
I hope this is the year I can start to move on. I’ve got the gluten free portion of this down. Now it’s time to wrestle with the really hard stuff.
May this be the one.