Wednesday, December 21, 2011

Thinking About Christmas: a non-FPIES post

Last year, in one of my friend’s Christmas cards – without a doubt THE most anticipated Christmas card to arrive in our mailbox each year –she wrote, among other things, “I also know that back in that stable there were screams of agony, and blood, mucus and poop in the hay, and a tunic soaked with breast milk on the night that Jesus was born.” Let’s be honest, this isn’t the usual Christmas card banter but it got me thinking… and I’ve been thinking for the last year about just this. The BIRTH of Christ. I think we say ‘the birth of Christ’ about a million times during the Christmas season, but I don’t know, even as mothers and women, that we think about it from this other perspective – and I think it’s an important one for us all to consider. To be honest, I wonder if it’s one that isn’t considered because most of those in the pulpit are men, but that’s a different issue all together.

The BIRTH of Christ. I’ve given birth. It’s messy. It’s painful and messy and smelly and exhausting. And dangerous. I don’t know the actual statistics but I do know that the US has an incredibly high infant mortality rate for an industrialized nation. Can you imagine what the statistics were when Christ was born? I am guessing that in the barn or cave where Mary gave birth, there wasn’t a midwife, much less a doctor or nurse. Mary had surely not practiced Lamaze, the Bradley method or hypno-birthing. Mary could, quite possibly, have given birth alone. Not to pick on men or Joseph, but it was a big deal for my Dad to be allowed in the delivery room when my Mom gave birth to my sister, and that was in the 70’s. Men, only relatively recently in history, have played a role in the birth of babies in any way. I’m going to go ahead and guess that nothing was sterilized in the barn the day that Christ was born, and that neither mother nor child got any antibiotics for any reason during or after the birth. There were, by all accounts, animals in close proximity. Farm animals! And don’t even get me started on pre-natal care. Mary had no ultrasound and was without prenatal vitamins. Didn’t she ride to Bethlehem for the census on a donkey? And wasn’t she incredibly young? What, like 15? So… the BIRTH of Christ? Simply because of when in time it took place, it is an event that is marvelous to me (and I gave birth without any drugs). The BIRTH of Christ was fraught with danger at every turn and the Lord God gave to us His only Son to become man this way. Just sit for a moment and think about that. Think of all that can go wrong. Think of what a messy business birth is. The Lord arrived this way. This gets me every time. When I really think of it, my throat closes up a bit and my eyes tear up. He so loves us that He allowed his Son to be born man, like all men, in this messy, dangerous way.

Christ was tiny. He wailed. He had a tiny, misshapen human head. He was blotchy and fuzzy. He nursed. He was wrapped in swaddling clothes because swaddling a child soothes them; feels like it did when they were back in the womb. I think that giraffes walk immediately once they’re born. Whales swim immediately. Some animals hatch from eggs without any parental protection present at all and simply get on with the business of living. Humans are wholly incapable of surviving on their own for years. YEARS. Can you picture a newborn just after birth? Not the round, pink ones you see in TV shows, but a bruised, puffy, real newborn? They’re helpless. They have no hard shells to protect them, no layer of fat to keep them warm, no sharp teeth to fend off predators. I can remember the moment I held my first child for the first time and was overwhelmed with emotion; feeling the love and the pride and the weight of responsibility for her. She needed me. She would need me for a long time. It didn’t end with infancy. Christ was an infant and then a toddler and then a child and a teenager. His world didn’t have safety seats for the donkey cart, vaccinations for all of the diseases that ran rampant, antibiotics, probiotics, vitamins…. Living to 50, during the time of Christ, would have been living to a ripe old age because life was harder. And the Lord God so loves us that He gave us His Son, to live as man lived, in this messy, dangerous way.

When we speak of Christmas and the birth of Christ, I think we all – me included for so long – picture this Nativity Scene: A serene Mary kneeling at the side of the manger and a peaceful Joseph looking down lovingly. The animals sit calmly by and Shepherds visit too. We sing Silent Night and O Little Town of Bethlehem. The truth is, Mary probably wasn’t up for visitors that night, nor was she up for kneeling for too long. She was exhausted and sore. And the barn wasn’t peaceful, but filled with the cries and whimpers of a newborn. There are countries that, as part of their Christmas traditions, sing songs like lullabies, and other countries where people shake rattles to help soothe the Christ Child. I like those traditions. I like the thought of this more realistic Nativity scene. God became man. He became man with all of the trappings and pitfalls and messiness of life here on Earth. For us. He so loves us that He gave us His Son. His only Son. This parental love is a love I understand. This is a Christmas I can celebrate. This gift, this real labor of love, is one I can appreciate. This is the miracle of Christmas. Alleluia!

Thursday, September 1, 2011

Check out the FPIES Foundation Support Forum!

Can you tell we're excited? The FPIES Foundation is the realization of months of work and planning - and maybe even years of thinking and dreaming about what what can be done to help FPIES kids and families. So if you haven't checked it out yet, please do so. And did you know that there is a wonderful support forum set up? It's free, easy to use, easy to search, and a great way to connect with other FPIES families. Hope to see you there!

Wednesday, August 31, 2011

The FPIES Foundation has arrived!

This morning, along with 7 other dedicated moms, I am proud to announce the launch of The FPIES Foundation.

When your child is diagnosed with FPIES, doctors don't have a packet of information to give you or a website to direct you to. It is difficult to find another family to turn to for support and advice. An FPIES diagnosis is isolating and scary, in large part due to the simple lack of information available about it. We hope to change this. We hope that no family struggles alone again, but can find one another, information and knowledgeable medical professionals using our resources. We hope to educate medical professionals so they, in turn, are able to help more families, identify FPIES earlier and avoid additional complications.

I am so proud of what we have accomplished. I am so proud that it aches in my chest... and this is just the beginning. There is so much in the works, so much more to come! It feels WONDERFUL to be doing something so proactive - especially as FPIES is such a reactive condition (feed something to your kid and wait to see what happens). We did this for Genevieve - and for Brendan, Sam, Samaya, Carter, Kara, Bridget and Ellie... and we did this for YOUR FPIES kiddo too. You are not alone!

Tuesday, August 16, 2011


It's been a long time. Again. I used to be a prolific little blogger and now... time flies, days pass, and blogging falls lower and lower on my prioritized 'to do' list. Yes, I really do have one. I think all the time about my friend who is a mom of 7 and wonder at how she gets so much done every day and worry about the lack of accomplished items on my to do list. Wipe noses? Check. Wipe butts? Check. Feed little monkeys? Check check. Feed myself? Yeah.... soon :) Clean the house? Yeah.... soon-ish?

But we do have some updates. Wanna hear them? You're reading this, aren't you? So I'm guessing the answer is yes. If not, stop reading now. Okay, here come the updates....

1. Ginny's FPIES story was recently featured on WGN news. Really. Crazy, right? As you all know, we've RAVED about Wonder Woman and, via a friend of mine who works at the hospital with which Wonder Woman is affiliated, the hospital's PR department got wind of our story, pitched it to the news and... there we were, on the news. They interviewed me for well over 30 minutes and it was a little nerve wracking knowing that they'd be editing that down to about 2 minutes. In my usual style, I didn't remember to do much advance planning for this and was left wondering, the day before, just what we should wear and what they might ask me. John said they would surely ask about our first trip to the ER and that threw me. Of course they would ask that. Why wouldn't they? But I can't think about that, much less talk about it, without getting choked up. I went over and over it in my head, thinking of ways I might tell that story without getting all teary eyed. That didn't work. They asked, I got choked up and, to make it worse, followed my blubbering with nervous, crazy laughter. Oops. Overall though, I have to say that the crew that was here was lovely, Wonder Woman rocked (and, we found out afterward, was sick as a dog the day they interviewed her but she toughed it out for us!)and we feel like it will really help get the word out. Wonder Woman let me know that she was surprised and pleased by the number of colleagues and patients asking her about FPIES. Hooray! So... you wanna see it? If you watch it, you MUST promise not to make fun of me. Promise? Okay, here it is. Oh... and the Goob looks so cute :)

2. We have more food passes. Hooray! Genevieve has added raspberries, asparagus, grapes and raisins, plums and nectarines, potatoes, safflower oil and CORN to her safe food list. Yeah, I am a proud mama and watching that kiddo happily gnaw on an ear of corn really makes me smile. Thinking of her eating an ear of corn at the pumpkin patch this fall makes my heart soar! This makes our safe food list pretty big, but it's amazing where soy and rice (and oats)lurk, keeping us from so many packaged food - and still mostly anything from a restaurant. But.... every day is better. With the pass of eggs, we found another ice cream safe for G. She umm.... well, she loves it.

3. As big as our safe foods list is, we have some foods on there that no longer really figure in. Ginny refuses millet and quinoa. I wonder if she was so overloaded for so long that, in light of new options, she is just no longer interested. Funny, right?

4. Without a doubt, Genevieve's favorite meal would include salmon baked with a little bit of butter and lemon juice, grilled asparagus, blueberries and Haagen Dazs five chocolate ice cream for dessert. I am already planning to serve this to her for her birthday. Yes, her birthday isn't until November. Yes, I am giddy excited to have so many options for her this year vs. the banana, quinoa muffin she had last year.

5. Genevieve is doing incredibly well. She looks healthy. She smiles and laughs and follows her big sister around like a baby duckling. We live in a monkey see, monkey do world and the sound of my two girls laughing together, and having them get to share so many snacks, is an overwhelming, heart wrenching joy. We are so blessed that, despite our early fears, FPIES has touched our lives in (comparatively) a very mild way. There are others who are struggling. Just thinking of these kids, these families, makes me cry. Not to preach, but if you know anyone struggling with a chronic illness, don't forget to reach out. Pray. Make a meal. Babysit. Just listen. Support makes all the difference.

Tuesday, May 17, 2011

One Year Ago Today

One year ago today I went to the grocery store after having put my 6 month old baby to sleep, and came back a short while later to find her grey, cold, unresponsive and vomiting repeatedly and profusely as my husband held her in his arms.

One year ago today, we rushed to the emergency room (for the first time); me holding my child in my arms in the car the whole way chanting, "It's okay. It's okay. You're going to be okay. You can do it. You can make it. We'll be there soon. Keep breathing. You can do it."

One year ago today, we started down a long road filled with questions, fear and uncertainty.

One year ago today our world really changed, even though we didn't know it at the time.

One year ago today my child was still a baby. I now have a running, talking, laughing, very opinionated toddler.

One year ago... and just reliving all of that as I type makes my hands shake, my eyes tear up and my throat tighten.

But today is better. I spend a lot of time on this blog complaining and venting and sharing our struggles and scary moments. But today is better - and I know that tomorrow will be better still. One year has brought us many trials - with doctors, with acceptance, with understanding, with logistics and, of course, with food. One year has brought us a few failures, but many successes as well.

One year has brought us 6 pounds, 6 ounces of weight gain, which now puts our Genevieve into the 25th percentile. We have worked hard for each ounce and truly celebrate this victory!

One year has brought me new found patience, knowledge, an incredible support system and a better appreciation of my husband, our children, our health and the blessings we do have in our lives.

One year has brought Ginny a list of TWENTY FOUR safe foods:


1. Pears
2. Apples
3. Blueberries
4. Mango
5. Banana
6. Avocado
7. Strawberries
8. Peaches
9. Mandarin oranges
10. Watermelon
11. Passion Fruit (small amounts as an additive)

12. Spinach
13. Carrots (Orange and purple)
14. Broccoli
15. Cucumber
16. Cauliflower

17. Grass Fed Beef
18. Salmon
19. Eggs (we started this trial on Mother's Day!)

20. Quinoa
21. Wheat/Spelt
22. Millet

23. Milk
24. Cocoa
25. Misc: Brown Sugar, Canola oil, Sunflower Oil, Salt, Lemon juice (in small quantities as an additive), Baking soda, Honey

We had Ginny's 18 month check up (a little late) with Wonder Woman yesterday and she celebrated these milestones with us - the food, the weight, the maintenance of a healthy child amidst so many struggles and, of course, I appreciate her for that. Sometimes, as I look at my child who seems so outwardly healthy these days, I wonder about FPIES. I'm tempted to just feed her and see what happens. I wonder if we're wrong. Wouldn't you? And then I remember how it all went down one year ago today and I mentally run through the list of diagnoses we considered and why each was struck down and I brace myself again to accept this card we've been dealt. Yesterday, when I asked Wonder Woman about trying soy when Ginny turns 2, she actually did the same thing I do; she flipped through Ginny's file, reviewing all the notes from the ER visits, the various tests and results and possible other answers, and replied that, in her opinion, she'd wait until Ginny was three to try rice and soy, and not to push it. She sees no answer besides FPIES. When Ginny has such a good and varied diet, why push it if we don't have to? Why risk the backsliding? I don't love that answer, but I appreciate the consideration and wisdom behind it as well.

So, one year later, that's where we are. We're still scared. We still have scary moments. The anxiety I feel at the beginning of a food trial hasn't lessened, but each food pass is a bigger deal. Each ounce gained is another confirmation that our child is healthy. Each day is enjoyed more and appreciated more - and filled with determination and hope. My friend Bea says, "Life can get so life-y" and I think of this often. It gets life-y and gritty, but even when we're down in the dirt we're doing our best to enjoy making mud pies instead of just wallowing.