Sensitivities, Allergies, and Celiac! Oh My!

“I don’t know how you manage.”
“I could never do it.”
“What do you feed them??” (asked incredulously not curiously)
“They will out grown it.”
“My cousin’s husband’s sister’s daughter…..”
“Oh poor thing will never know what (insert random food choice here) tastes like!”
“I could never live if I couldn’t eat (fill in the blank).”

 

Think before you speak

Think before you speak

 

 

Nearly every encounter with someone new results in at least one of these being said to us. I am so sick of it but at the same time I understand it. We aren’t normal. We can’t pretend to be. We are one of those families. We are the family that reads every singe label even on the foods that was “safe” last time we were at the store. You just never know when a company will change their ingredients and that could be deadly to us. We are the family who avoids restaurants like the plague. We are the family that asks you to wash your hands and face after you eat certain items when you are around us. We are the family that asks for certain foods to be restricted from whatever occasion is taking place, and at one time from the classroom our child was in. We are the family who eats mostly (90% of the time) organic, non-GMO certified, non-processed, foods. No, we are not elitist with our choices and opinions. We are a food allergy and Celiac Disease family.

In our case it is genetic. I have a severe seafood allergy that gets worse the older I get. It isn’t a shellfish allergy. It is all seafood. If I touch tuna fish I break out in hives. An accidental intake of Caesar dressing results in a mad scramble for the Benadryl. I do not want to think about what eating an actual fish would do to me. My dad and grandpa can’t eat certain fish without getting sick and my sweet niece is allergic to seafood also. Another niece is definitely sensitive to seafood if not actually allergic.

Some of our No-No Foods

Some of our No-No Foods

Bug was one year old when he had a severe allergic reaction to apricots. Interestingly this is indicative of a possible future latex allergy, or at least that is what we were told by the medical professionals. My grandma had a latex allergy and I am very sensitive to it. Connection? I think so. For numerous years he had to avoid all stone fruits (fruits that contain a pit). He has grown to the point where he can eat anything except apricots. We limit latex exposure just to be safe.

C-Dog. Poor C-Dog. It was Mark’s former supervisor who first suggested C-Dog may have Celiac Disease. He is a rare and fortunate individual to be diagnosed at the very early age of 3. This was way before gluten-free was a food trend and it was not easy to feed him. Even worse was he has Sensory Processing Disorder so textures were always a battle. Even now we still make mistakes and accidentally give him something that has cross-contamination.  How do we know? Well, every time gluten passes those lips he develops a weird smell that doesn’t go away with a shower. Deodorant and cologne can’t compete with the “gluten smell.” His body has to heal itself from the contamination and then the smell eventually fads. As my mom’s family digs into our medical history past we are learning this is a genetic disease, in fact my lovely aunt has recently been diagnosed also.
C-Dog also has the inability to digest and metabolize simple carbohydrates properly. If you are familiar with gluten free then you know simple carbohydrates are a huge replacement in many recipes. We try to avoid simple carbs, but it isn’t easy. He has to take supplemental enzymes whenever he eats.

More No-No Foods

More No-No Foods

Elf has NINE, yes nine, food allergies. Each a different level of severity. Each one of her allergies can be traced back to my uncle who had all of them and then some. Sadly he passed away in the 50’s of Leukemia. My mom has all of his medical records and that is how I know my daughter shares his allergies. She is allergic to milk (no she is NOT lactose intolerant and NO she will not outgrow this allergy considering the severity of it). She is also allergic to soy, eggs, rice, white potato, wheat, oats (yes, even the gluten free ones), peanuts and treenuts. Yes, she can have coconut. Coconut is NOT a nut and is in fact a separate allergy. I am very thankful she can have coconut! She has outgrown several sensitivities. For awhile we had to limit citrus. She can now eat it to her heart’s content.

How Elf feels if she eats something bad

Princess is allergic to corn. Between her corn allergy and Elf’s soy allergy we cannot eat anything in a package, or so it seems. The culprit is the oils, usually cooked in but sometimes an ingredient (like in dressings). We even have to be careful which brands of olive oil we buy as it has been discovered many popular brands really aren’t 100% olive oil. :/
Princess also has a pretty significant sensitivity to gluten. She has not been diagnosed with Celiac Disease but her Dr encourages a gluten free diet for her. She is also sensitive to eggs and lactose. She can eat a bit of cheese or yogurt but we have to monitor her intake.

Princess feels "icky" and "crazy" when she eats gluten

Princess feels “icky” and “crazy” when she eats gluten

That leaves Zen. He just recently started eating foods other than breastmilk. I pray he doesn’t add to our list. I hold my breath, hoping and praying. Of course many foods he will never have. He will never have gluten or cow milk. He will drink coconut milk like the girls and I do. I will try him on cheese and yogurt though once he is a bit older.

Shopping is always a chore

Shopping is always a chore

What about those pesky comments and questions from above?
Well here are my replies.

“I don’t know how you manage.” I have no choice. If it was your child you would manage also. I read a lot and connect with others in similar situations and learn from them.

“I could never do it.” Yes you could. When the choice is do it or die (literally) you do it.

“What do you feed them??” (asked incredulously not curiously) I feed them food. Just because it isn’t what you eat doesn’t mean it isn’t food. Fruits, veggies, and meat are the main elements of our diet.

“They will out grown it.” Perhaps, but that is not likely. Please do not assume you understand our medical history based on *YOUR* experiences. Every situation is different. Your words do not offer me hope, only sadness because I know it just isn’t true.

“My cousin’s husband’s sister’s daughter…..” As much as I love to share stories with other people in the same boat I do not want you to think you understand what my life is like because you know someone who knows someone who has an allergy. However, if it is close to home (you, parents, sibling, etc) then please share! Solidarity!

“Oh poor thing will never know what (insert random food choice here) tastes like!” Well they do not know what they are missing and usually they aren’t missing on anything. Packaged junk food is merely fillers and chemicals. My kids still get treats and they are amazing because they are not full of the other stuff. For example, I use Enjoy Life chocolate chips (which is safe for all of them) and melt them to make candy!

“I could never live if I couldn’t eat (fill in the blank).” Actually you could never live if you ATE that food and were allergic to it so this statement frustrates me the most.

What CAN you say? Well, a simple “That sucks” works because it does suck. Living in fear that your child can die because someone offers them a candy (think lollipops at the bank which have corn syrup in them) sucks. It sucks knowing that cross contamination with gluten is invisibly damaging the insides of your young child. It sucks having to take 2 hours to grocery shop because every label MUST be read. It sucks. That is all.

**A very big thank you to my kiddos for drawing these lovely pictures for me. ❤

 

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Impetuous Chap

Last night I was sitting in The Chair putting Zen to sleep. He was nearly there. The 3 elder kids were in their bedroom, supposedly going to sleep. Suddenly I heard yelling, a loud crash, and the worst scream known to mankind. The kind of scream that makes you want to vomit. One of the kids was hurt. Badly. Mark went running. I looked down at the sweet, closed eyes of Zen and in that half a second I made the decision to join Mark. He is more than capable, a very hands on daddy, but one of my kids was hurt. I needed to be with whomever it was. I jumped up while Zen continued to nurse, his eyes fluttering. Mark yelled, “GET ICE!!” I fumbled with it twice before getting it to the bedroom. I passed a pacing Bug and saw C-dog on the floor, writhing is pain. I have no clue where Elf was. I know she was there but once I saw the hurt child I saw nothing else.

“WHAT HAPPENED???”
“He jumped off the top bunk.”
“What? Why? That isn’t even his bed!”

Apparently C-dog thought it would be a brilliant idea to jump off the bed in order to catch the balloon. The balloon. It is Zen’s. Mark bought it for him for the early celebration of his upcoming first birthday. I have been after Princess and C-Dog all week long to just leave it alone. It isn’t theirs to play with. They struggle with self-control though and on top of it C-dog it impetuous to the max. If anyone reading this has a Sensory or Spectrum kid you can totally relate to this.

Anyway, the ribbon came off and the balloon was on the ceiling and C-Dog wanted it. Nothing else mattered. Bedtime didn’t matter. Staying out of his brother’s bed, which is a rule, didn’t matter. Safety didn’t matter. He jumped.

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Zen was fully awake now. It is going to take forever to get him back to sleep but I need to focus on one issue at a time and the hurt child obviously comes first.

After a quick assessment Mark gathered C-dog into his arms and headed out to the local Emergency Department. I was left to get the others calmed and asleep. Bug and Elf were no problem. They went to bed and fell asleep. Bless them. ❤ Princess laid on the couch waiting for me to “nuggle” her. She fell asleep waiting. 😦 I will have to give her extra cuddles tonight.

Zen and I trekked through the uncharted waters of “I am tired. I want to sleep. I want Mommy to hold me. I do not want to nurse anymore, but I have no clue how to fall asleep in her arms without nursing.” Usually I have Mark put Zen to sleep when he doesn’t want to nurse. We managed and Zen succumbed and drifted off into dreamland. Whew. One less worry….

Mark reported to me that when the doctor asked C-Dog what happened he said “I foolishly jumped off the top bunk.” Well, that is something at least! He realizes what he did was foolish! He doesn’t always realize this even when he gets hurt. I just hope this lesson doesn’t get lost and forgotten.

The doctor claims “It is not broken.” C-Dog slept on the couch just fine but woke in pain and has been complaining all day long. He can’t put any pressure on his foot. He needs help getting around. My instinct tells me I need to consider getting a second opinion. Bah.

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UPDATE: After a full day of not being able to put any weight onto his foot I decided that I had to bring him somewhere else. I brought him to the local orthopedic urgent care this morning. Of course this was after I got lost in discussion with him as we were driving the 30+ minutes it takes to get to this place and missed my exit resulting in a nice side trip to the state south of us (we live near the boarder). Anyway, the new place took X-rays from different angles and C-Dog fractured one of the growth plates in his foot. 😦 He is more sore after all the handling he had to endure. He has a boot-cast and a walker. He isn’t to put any weight on the foot for several days and then he can with aid of the walker. Eventually he will wean off the walker and just get around with the boot. His next follow up is in 10 days to see how it is healing.
C-Dog and his walker

Impromptu Field Trip and What the Turtles Taught Us

The internet is out…again. Seriously, we have the worst service but it is cheap and no contract and considering we have to make every penny count and we are only in this house temporarily I am stuck with the crummy service.

The problem is I use the internet when I homeschool. Sure there are things we do that do not require the computer but that only gives us about a half a day and I need to make every second count. If I don’t keep the kids busy then, well let me just say it gets quite loud and crazy 🙂

So what to do, what to do? I opted to load them into the van and go to the local zoo. Normally when we go to the zoo I teach about classification, proper animal names, where they are found, if they endangered, etc. Today the tortoises decided the kids needed a refresher course in procreation 😉

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The picture above is a seriously cute baby tortoise following his Mama ❤

My kids have been subjected to “the talk.” When I was pregnant with Zen we sat the kids down and were open and honest in an age appropriate manner. They know mom and dad have a special relationship with just each other. They understand how fertilization occurs. They understand how babies are born. In fact C-Dog very much wanted to help the midwife “catch” Zen when he was born. Zen was born at 3:30 am so C-Dog was asleep. He was disappointed.

I am not scared of discussing the intricacies of life with my kids. I have no issue discussing love, mating, death, and everything in between. I never tell them more than they need to know at that moment and I also never lie to them. It is a balancing act. The following is what happened….

“Hey! What are those tortoises doing?”
“Are they piggy backing?”
“They sure are noisy!”
Out of the corner of my eye I saw the zoo keeper lift his head in curiosity to how I was going to deal with this.
Game on!
Did I get embarrassed? Nope. I actually like that my kids don’t just ignore things. They are really observing nature around them! I think they notice more than I do. My reply was “They are mating. Procreating. Making babies.”
I noticed the zoo keeper smile and return to his job. Yes! I said something right! I wonder if it frustrates him that some parents laugh off the situation or shuttle their children away from the animals when they are being, well, animals!
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My kids replied, “Oh OK” and that was that. Kind of. They did keep talking about babies and one of them mentioned how no matter who you love only a grown up man and grown up woman can actually make babies. The boys answered the girls’ questions. They all discussed how mammals don’t lay eggs, well except platypus. They took the conversation to a higher level and I got to witness them learning on their own. They never really needed more information, however if they had asked I would have answered. I only had to correct misinformation once or twice. Much of their speculation was right on target.

I love that my kids basically taught themselves and the older ones reminded the little ones what they already have been told. I was there to gently guide them and correct them as needed, but this was their moment.

To all the parents out there, this is my reminder to all of us that kids don’t always need books to learn. They don’t need the internet. They DO need to be allowed to explore and ask questions. They need experiences. It is easy to forget this. I know I for one often get distracted by how many pages are left in their math books or how much writing has taken, or not taken, place. I get distracted with looking things up on the internet for them because it is easy and fast. I need to remember that some things they can discover on their own.

We had a lot of fun. Learning was had and memories were made. Thank you tortoises for taking that moment to, um, meet your needs so my kids could take learning into their own hands.
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We also watched a tiger pee. I had to stop the potty talk because although my kids are seriously amazing they are also kids. Potty talk makes them laugh. Yes, the tiger is peeing in this picture. I didn’t realize it until afterward. I thought about deleting it. I prefer it here though 😉

Peace,
Andrea

To the Woman Behind Me in Line at the Grocery Store

Dear woman behind me in line at the grocery store,

You don’t know me. You have no clue what my life has been like since October 1, 2013. You have no clue that my family has gone through the wringer. You have no clue that we have faced unbelievable hardship. You have no clue we have been humiliated, humbled, destitute.
You have no clue I have cried more days than not; that I fight against bitterness taking control of my heart. You have no clue that my husband’s pride was shattered. You have no clue my kids have had the worries of an adult on their shoulders. You have no clue their innocence was snatched from them for no good reason. You know none of this.

What you do know is I tried to buy my kids some food and that the EBT machine was down so I couldn’t buy that food. I didn’t have any cash or my debit card with me. I only had my SNAP card. All you heard was me saying “No, don’t hold it for me. My kids are hungry now and I have no other way of paying for this.” You didn’t judge me. You didn’t snarl “Maybe you should have less kids.” You didn’t say “Well, get a job and learn to support yourself.” You didn’t look away in embarrassment or shame for me. You didn’t make any assumptions at all.

What you did was you paid that $17.38 grocery bill for us. You gave my kids bananas, yogurt, apple juice, cheese sticks, and a peach ice tea for me; a rare treat and splurge. You let me hug you and promise through my tears that I WILL pay this forward. I WILL pay someone’s grocery bill for them. That $17.38 may not have been a lot for you, but it was priceless to us. In the car my kids couldn’t stop gushing about you; our “angel in disguise.” They prayed for you. They prayed you would be blessed. You restored some of our lost faith. One simple and small action changed our lives. You probably have forgotten about us by now, but we haven’t forgotten about you. You will forever be a part of us even though we don’t even know your name.

You have no clue how grateful and embarrassed I am that we pay for all our food with SNAP. We eat well thanks to the government. I love that. I love that the government makes sure my kids are cared for. It is one less worry for us. I also struggle with pride and embarrassment. I defiantly tell people we are on SNAP. Daring them to judge us.

Only those closest to us know why we are on SNAP. They know my husband is a hard worker who was laid off after 17 years in a management position with his former company. They know we were moved from our home to a new state only to be left homeless since the house we had came with the job he lost. Only those closest to us know my husband works part time while looking tirelessly for more; that he has submitted more applications than he has received interviews for. Too many jobs are only offering part time work anymore. It is not easy for a 40-something year old to find a job that will support his family of 5 kids.

You know none of this but you didn’t let that stop you from being compassionate and generous to someone you have never met.

To the woman behind me at the grocery store, you have no idea how much we appreciate you. You have no idea the impact you had on my kids. You have no idea how incredibly thankful I am for you. Your action may have been small, but to us it was monumental. Thank you.

Thank you for not judging us. Thank you for giving my kids a snack when they were quite hungry. Thank you. Just thank you.

Forever,
Andrea, the woman in front of you at the grocery store with the cart full of kids who are no longer hungry
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**UPDATE** Mark got a full time job in the state we call home. He is there now and we will join him once he finds us a home. Thank you all for your prayers and kind words.

 

Q & A

I had a few friends ask me if I would be willing to do a Q & A blog. Well here it is!  This is your chance to ask me anything you want to know about me! I may or may not answer depending on if I feel it infringes on the privacy level I am trying to maintain for my children. I commit myself to answering as many as possible and I promise to be completely honest. Comment below with your questions and be on the look out for the follow-up blog with all the answers! 
Until then, have a happy day and enjoy this picture I took while visiting my cousin in Florida.

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Ahhhhhh. Sunny, sunny sunshine!

The Chair

I am not sure why but Zen has been restless in his sleep this past week. On an average night he starts out in the cradle and then makes his way into bed at half past very late to nurse. He usually then stays cozy in my arms until about 7:30. No, I do not sleep until 7:30, although that would be awesome. I sneak my arm away Ross-style (if you have ever watched Friends you should totally understand the reference. If you haven’t, well, maybe you need to) and he stays asleep for about an hour or so after I get up.

This past week he has not stayed cozy in my arms. He has been restless. He has tossed and turned, flipped, rolled, sat up (yes while asleep), laid on me, laid on Mark, and sleep crawled…into the wall.

The crazy thing is he keeps doing it. Seriously one would think that even in your sleep if you crawl into a wall you would stop trying to go forward. He keeps it up while we clumsily try to stop him in our sleepy-eyed state. I can’t decide if I am amused by this or not. He isn’t hitting hard enough to hurt himself, but one would think it can’t be great for him either. However, if you could see the silly lad crawling on our bed straight into the wall you would probably chuckle.

It was 2 AM.  Zen flipped, tossed, flopped onto Mark’s face (yes I laughed), and then sleep crawled into the wall yet again I decided this was ridiculous. I gathered him up and he and I sat in the living room in The Chair. It is our sanctuary. The Chair is where we sit when it is time for some snuggles, drive-by loves, breastfeeding snacks, breastfeeding meals, and naps. I always put him to sleep in The Chair. When Zen is done with me it is where Mark puts him to sleep. The Chair is magical. OK, maybe it really isn’t magical but Zen knows it and associates it with coziness. It is an old beast but The Chair is a part of the family.

Sure enough as soon as I got settled into The Chair Zen slept peacefully in my arms while I dozed. Thankfully The Chair is large and soft so sleeping in it isn’t as bad as it could be. I was fine until I got cold. By then it was nearly 7. I made my way back to bed and was greatly annoyed that Elf was in my bed. I kicked Mark’s foot to wake him so he could removed the child (read “the child” with a note of disdain because I was so not amused that she was in my bed. The rule is she is welcome in our room but she has to stay on the floor.)

I climbed into bed which was no easy feat as C-Dog was on the floor on my side of the bed. Apparently Zen wasn’t the only restless child in the wee hours of sleep. I laid down and not a minute later Zen became restless again. ERG! I did doze until about 7:30 while Mark tried to deal with Zen, but I finally just got up. I brought him back to The Chair. The Magical Chair. He settled into my arms and I could feel tension slip away from him. At this point it was late enough in the morning that he was not going to go back to sleep so we simply cuddled for a bit and I looked into his saucer-wide blue eyes.

He is now happily crawling and playing. He has been all over the house. He has even stopped for a drive-by snack as I sit and type this. I am exhausted. I have no idea where his energy is coming from. I am slightly jealous and sightly in awe.

I have no clue what is wrong with Zen. I have no clue why he sleep crawls. Weirdo. The only thing I know is that at 2 AM I was not annoyed. Sure being tired sucks. Having a restless baby is no fun. However, I love this little guy. He is the product of something beautiful. I hate to see him not getting the rest his little body needs. I was grateful for his warm snugly body. I was thankful The Chair worked. This is a short season. I will treasure it. I know too well how fast the years go. It seems only yesterday Bug was snugly in my arms and now he rolls his eyes and wears trendy cloths. Sigh.

To the new Mommas out there, you are not alone. We understand you are tired and frustrated. It is so cliche, but it it true that the days are long and the years are really short. Deep breath. You can do this. To all the Mommas whose babies are grown, take a moment and appreciate the fact you made it! Congratulations! Now go get some sleep! To all the women who do not have children, please be patient. We understand you cannot fathom our lives but please still be a part of our lives. Parenting takes a lot of energy. We need you to be there for us to remind us that there is a whole entire world beyond The Chair.

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