How We Discovered Sam’s Allergies

Whenever I tell people Sam has severe allergies to milk, egg, and peanut, the conversation is always very similar.

Long (awkward? pensive?) pause.

“Ugh, that stinks. How old was he when you found out?”

Literally that is the exact same question every time. I have always wondered if people want to know more but can’t think of a better question, or just don’t know what to say, or what.

I’m assuming today that it is the former, and I thought I’d take the chance to share Sam’s story. It changed me, and 95% of what you’ll find on this blog is because of this story.

The story begins a few days before Sam was born, when I met a prophet in White House Black Market. I really did.

I was at a very upscale mall in our area. I was sitting on a chair, looking very pregnant, waiting for my mom, when a really well-accessorized, flashy-dressed, country-club-looking older woman sat down next to me. Since I was so obviously pregnant, that was a good conversation starter. When are you due? Is it a boy or girl? etc. etc.

“What’s his name going to be?”

Samuel.

This was almost four years ago, but I can still remember the markedly different tone her voice took on, and the way she looked off into the distance as she spoke.

Samuel. Like in the Bible. I’ve always loved that name. Well, may he just be a prophet to his generation. May he speak the truth to all those around him, and tell them how to serve the Lord.

She went on for a while actually, along the same lines. Then my mom returned, and I didn’t know what to say to the prophet with gold and diamonds everywhere. We left.

It was the oddest thing.

I think it’s funny how you pray differently for your children. For Ty, I always pray for his wife. I pray that God would protect him when he’s a teenager. I don’t know why.

But for Sam, her words always ringing in my head, I always pray that he would speak the truth to those around him, that God would use him to tell others how great He is, that he would be a light in his generation.

What in the world does this have to do with milk, egg, and peanut allergies, you’re wondering?

From the beginning, I knew two things. One, he was special, and two, there was something wrong with him.

Even as an anxious, inexperienced new mom, I knew very early there was something wrong. I still remember vividly the first time that Sam screamed. Not cried, screamed. I remember locking eyes with Todd, terror and helplessness clouding our faces. How could we have known that the cheese and yogurt I was eating translated via breast milk to  poison for his poor little tummy?

And then there was the time I fed him a bottle of milk-based formula at church. He was about a month old. On the way home, I heard him throw up. Not only was the whole carseat soaked, but he was lethargic, drowsy, and out of it. I wanted to call 911 when I got to my mom’s, and everyone thought I was crazy. But I knew something wasn’t right.

Eventually, though, it was my mom who noticed it.

Sam wouldn’t look at her.

It might be nothing. We should probably just “get it checked.” But I knew she was right. The moments when the doctor couldn’t get Sam to look at her were some of the most awful, embarrassing, and scary of my life.

What was wrong with him? He cried. He was unsettled. He was withdrawn. He wouldn’t smile at you. He was scared and gittery. What kind of a baby was this?

You will never find “autism-like symptoms” on a checklist for allergies. It won’t say “won’t eat,” or “doesn’t like people.”

But what I want to shout from the rooftops is:

• follow your gut – there’s something to the “mothering instinct” thing
• food issues don’t only cause “digestive” symptoms
• the best thing you can do is pray for wisdom

That last one isn’t just a token, “Christian-ese” language I felt like I had to say.

For us, it was the answer.

Right in the midst of it all – first-time parents trying to calm, engage, and feed a troubled baby, people all over praying for the little guy – we discovered something silly: milk made a rash on Sam’s cheek.

Within a week of a milk-free diet, he was a different baby.

It would be nice if this were the beautiful end of the story. It sort of felt like it. A few months later we learned that his milk allergies were very high, and he also had egg and peanut. And the truth is, raising a child with severe food allergies and asthma often feels like you are living on a cliff. I am such a different person than I was three years, five months, and eighteen days ago, when Sam was born.

• I worry more.
• I make 19,651 delicious meals without a trace of milk, egg, or dairy.
• I sympathize with moms raising autistic kids or colicky babies.
• I know, I know, I know that God answers prayers.
• I feel that I have a porcelain-globe-of-a-child. Beautiful, fragile, a gift.

Whenever I am knee-deep in an asthma attack, epi-pen moment, or just worried about Sam, I wonder why in the world God gave a girl like me a porcelain-globe-child to worry about. But in a million more ways, I think it’s perfect. I’m a good mom for him. We’re good for each other. 🙂 (*Mental note: print this out and put in the refrigerator, when you need to read it in two days. 🙂 )

Update on Sam

It’s been awhile since I’ve commented on Sam. It’s not that I don’t have things to say; it’s just that I’m not sure you’d believe them. I hardly do myself.
I have files and files on tips for infant eye contact, on signs of autism, on evaluations and write-ups and doctor forms for Sam. I think it will be the story I tell till I’m 100. It felt so real, those days and weeks where Sam wasn’t interested in looking at you, woke up at night crying inconsolably, and refused to nurse. It was terrifying because I felt like I didn’t know who my baby was, really. Would he ever be normal? What was wrong? How could I fix it? Hope has never been my strong point. Others hoped for me. Todd. Those who prayed for us. And, mostly, my mom. Early in the struggle she said she had lots of hope because it was so early, and that she believed we would tell him about this when he was 10, the story of how God answered our prayers for him. For some reason, I clung to that. In my darkest scariest moments, I would ask her: “Mom, do you still think we will tell him about this when he’s ten? Still?” She would laugh and always say yes, and yes, and yes. And I would close my eyes and picture us all, our family…we would be at the beach (because the beach is my happy place, I guess) and Todd and I would be sitting on beach chairs and Sam would be running up to us, showing us shells and waves and pointing out kites and everything else. If Mom believed it could happen, it could.
I had forgotten about that little vision until I started planning our family vacation this year. I was laughing in my head at how much fun Sam was going to have at the beach. I couldn’t wait to bring him, because I knew (and I was right) that he’d be running around pointing out the waves, and the sand, and telling us when he saw a dog or a shell… And at some point, it hit me. The vision. Mom was right, just nine years off. Our miracle did happen, it just didn’t take that long.
Sam, I want to remember forever how you say “Go Skins, Boo Cowboys” and clap when everyone laughs. How you said, “Daddy, home, see Sam, happy” the other day when Dad walked in from work. How you remember the “awesome rabbit” in Grammy’s yard and the next three words are always “Johnny,” “bushes” “catch” because you thought it was the coolest thing ever when John Haggan tried to hunt it. You tell me every time we pass a garbage truck, a tanker, the gas station on 73, or a bulldozer, which to you is simply, “bull.” You ask for noodles and beans or chicken and fries when you’re hungry, and can tell me every item on the “things that move” page. You remind us about the “hay ride,” the lazy river, and when you tell us, “big one coming,” we know you are remembering the “awesome ocean.” You ask to read “Humpy Dumpy,” and love to point out his shoes. Your favorite song is “This little light of mine,” and I know you want me to sing it when you say, “bushel, no.” It took me awhile to get it, but now I do. You love learning the name for the whisk and the teapot and the egg masher. All lotion is “desitin,” all water is “Lake Norman,” and every train is Thomas. The cutest things in the world are when you ask for SamMule, call me Mommy, Mommy, and when you remind yourself frequently, “Daddy, see Sam, soon.”
We love you Sam. You make us laugh, keep us on our knees, and remind us daily of The God Who Hears. He loves you more than we do. Love, Mom and Dad.

I’ve got the soy soy soy soy down in my heart

For those of you who have been sitting on pins and needles wondering how the story “Sam and the Search for a Formula” would end, relaxxxxxxx. Here it is! I’m not super excited about soy formula – never was – but Sam is chugging it like a champ and doing great! (I’ve added it to spiders, mice and Boss the bulldog in things we pray God will protect Sam from.)
We have been so thankful for the progress Sam has made since the big scare in July. A few weeks ago we realized truly how much that behavior WAS milk allergy. We tried Sam on Alimentum, which is milk broken down into very basic parts. It’s supposed to work for milk- allergic babies, but after a few days, our happy little guy wasn’t so cheerful…tired, not wanting to interact, a scary deja vu.) A switch back to soy, and he is happy!!!
I think this is interesting to note. When I think of allergic reactions, I think of epi pens, puffy eyes, spitting up…I don’t think of lethargy, inactivity, and autistic symptoms. But for Sam, this was his reaction. I have heard that gluten allergies produce similar things. One group claims to “cure” autism with diet changes, in fact. I am so thankful we discovered it so quickly with Sam! No milkshakes anytime soon! It is possible he will grow out of it. (I did.) One final tidbit…Food allergies are highly genetic. If you have/had an allergy, your child has a 25% chance of having it. If both parents have it, 75%! Not that we needed it, but there’s another good reason to avoid getting a cat as a pet in the Smartt household! (Cats are so lame anyways…:)

As Promised…the New Sam!

More to come very soon! (computer too slow!)

Wonderful Day

Today was Sam’s evaluation with the publicly-funded early development screening board. Basically, three people came to our house to watch Sam play. Although the actual “recommendations” won’t come until later, their feedback was AMAZINGLY positive. Really, they didn’t say anything negative. They were impressed that Sam smiled and “talked” with them, grabbed for toys, liked being on his belly, rolled over, was aware of his surroundings, etc. I don’t think I’ll ever forget the look on the lady’s face as she got up to leave. “You have a beautiful little baby.”
Honestly, there wasn’t nearly as much weighing on this meeting as I three weeks ago would have thought there would be. But while I wasn’t surprised, I don’t think the joy will ever go away…every time I get a smile, a laugh, a look of recognition, I thank God for his gracious and abundant joy. He gives us so much more than we deserve.
I realize it’s been WAY too long since I’ve posted pictures…especially since the little guy is changing so much! He wakes up cuter (and fatter) every day, and does so many wonderful things. STAY TUNED for some pictures. 🙂

Got Milk?

Got milk? Don’t be mislead by the upbeat title. I’m overwhelmed. The dilemma is complex and probably boring to anyone who hasn’t breastfed a baby. Oh, how crucial all the boring facts have become.
So Sam is allergic to milk. That leaves three options. Soy formula, nutremagin (rice-based formula, which contains MSG!), or me resuming breastfeeding and omitting dairy from my diet.
Two weeks ago, when the question was presented, I chose the soy formula. Today, I considered titling this post “Soy Formula Is the Devil.” Maybe I should have. Don’t get me wrong, aside from some VERY painful BMs, Sam is doing great. Here’s the problem. After reading this, go google “soy formula.” Just do it. Read all of the horrifying, back-woods, unfounded but terrifying blogs, forums, and chatroom hysterics about the dangers of soy in babies. Boy babies in particular. Here’s your science lesson for the day: soy produces estrogen. (Who knew?) I’ve read about 8 times that a baby eating only soy formula consumes FIVE BIRTH CONTROL PILLS A DAY????!?!? What??? True or not, I’m done with it.
The issue would be over except for one, measly, annoying problem. Have you ever heard the word “relactation”? Me neither, but apparently it refers to the ability of a mom to resume breastfeeding, and apparently, it is about as possible as getting rid of wrinkles: once in a blue moon, it might happen. Nurse or pump 23 hours a day for 3 weeks and, who knows, you might get some milk. So here is my task, the one I have chosen to accept.
1. Say farewell to pizza, cheese, yogurt and ice cream indefinitely, and hope that all the small amounts of dairy in everything else won’t bother Sam.
2. Spend most of the next few weeks trying to “relactate.” (Isn’t the term already getting on your nerves?)
3. Do this all while continuing to be energetic, attentive, and focused on improving little Sam.
The funny thing is, even though in my head, I feel as if I just finished a marathon and someone said, “Great, now turn around and do it again,” in my HEART, I am not worried. God has already given so much, and shown us so much. I know he will provide. It just may be interesting in the meantime…

So Grateful

“In bitterness of soul Hannah wept much and prayed to the Lord. And she made a vow, saying. ‘O Lord Almighty, if you will only look upon your servant’s misery and remember me, and not forget your servant but give her a son, then I will give him to the Lord for all the days of his life’…So in the course of time Hannah conceived and gave birth to a son. She named him Samuel, saying, ‘Because I asked the Lord for him.’…After he was weaned, she took the boy with her…and brought him to Eli, and she said to him, ‘As surely as you live, I am the woman who stood here beside you praying to the Lord. I prayed for this child, and the Lord has granted me what I asked of him. So now I give him to the Lord. For his whole life he will be given over to the Lord. Then Hannah prayed and said: ‘My heart rejoices in the Lord, in the Lord my horn is lifted high. My mouth boasts over my enemies, for I delight in your deliverance. There is no one holy like the Lord; there is no one besides you; there is no Rock like our God.”

i samuel 1

“How great is your goodness, which you have stored up for those who fear you, which you bestow in the sight of men on those who take refuge in you.”

psalm 31:10

I’m Back

I realize it’s been a while… Unfortunately, I have a good excuse. The last two weeks have been some of the most challenging of my life. At times I wasn’t sure the blog would make it, not for lack of time but because it seemed everything I would have to say would be so different from what I had planned. You see, my goal for the blog has always been to express things that all moms, all people, could relate to.

But not all moms realize their baby isn’t making eye contact. Not all moms hear the doctor say, “I see your reason for concern” and schedule appointments with scary places you thought other people visited. Not all moms avoid the computer like it’s a sin because of the irresistible urge to google “autism” and increase the terror.

It’s a unique situation, but yet, as my mom told me in the midst of a trying moment, “Jessie, this is parenting.” Hmmm. I thought about it and – scary to admit – but embedded in my unexpected scenario are some common, unavoidable lessons that, like it or not, we ALL have to learn. Things like: Realizing life doesn’t look like you thought it would. Loving someone who might not always love you back the way you hoped. Pouring out your life for a totally unselfish cause. Giving the most precious pieces of your heart and hopes to God, and believing He will take care of them. Enjoying today when tomorrow seems scary.

God has been so good and gracious to me. While these last few weeks have been hard, they haven’t been fruitless. Sam is growing, changing, and responding to our “treatments.” In short, God is working a miracle in little Sam. It’s not the raising Lazarus from the dead sort of miracle, though. It’s more like the flood waters drying up miracle. A little here, a little there. It’s fascinating to watch. I’ve charted little Sam’s milestones by the day: looked up to find Daddy when he held him and talked, smiled at Grampy, laughed at me while “standing,” loves peek-a-boo and the dog… I just can’t wait to get up in the morning to see what he’ll do next.

Logistically, we do have appointments scheduled for eye doctors, specialists, and therapists. While we are interested to hear their feedback, it almost seems irrelevent. (Almost.) Two things I know:

1. Parenting in any dimension is hard, hard work.

2. Sam is in the hands of a generous, loving Father.

I will continue to post updates and am so grateful for the prayers.