Tuesday, April 1, 2014

Sicko Once Removed

These are my babies, granted this was a few weeks ago when my kids had crazy hair that made them look younger.

Kyle and Aiden have diagnosed eosinophilic enterocolitis, GERD (reflux), and periodic limb movement disorder (PLMD). Kyle also has diagnosed anxiety and ADHD. Kyle is triggered by dairy. Aiden is triggered by dairy and gluten. Both experience flairs and disease process unrelated to food triggers. Both are on an antacid, a sleeping pill, and an immunosuppressant. Kyle is also on a motility drug. Aiden is on an antidepressant used to treat severe abdominal pain on a nerve level. Charlie also has GERD (reflux), and she is struggling with gaining weight. She is on a reflux drug and struggles with self-soothe. She just is not thriving. And I see a road very similar to Kyle's in her future.

That makes me a mother of three sick children. Three diseased children.

And so begins the problem, because I can't seem to even find a good way to describe or classify my children. Sick? Disabled? Diseased? Compromised? Chronic? Affected? Patients?

Kyle is my oldest, smallest at birth, most affected medically. He struggles. He struggles with behavior. He struggles with food. He struggles with memory. He struggles to feel loved. He is my difficult child in so many ways. But Kyle is also brilliant. This was his most recent present because he asks questions like how do red blood cells come from the inside of a bone and into the circulatory system.

For Kyle, I read "The King Follett Sermon" in order to read to him the parts about the nature of God. Kyle had asked me, "Did Heavenly Father live on this earth?" I wanted him to make his own decisions on the answer.

Kyle is my sickest. We are at nine surgeries. Nine. At five. Nine. Nine. That number scares me, because it is only within three years. Nine. Nine times with the mask. Nine times on the table. Nine times. Do you know part of our doctor kit at home involves tourniquets from blood draws and masks from anesthesia? Kyle explains how to use these to his younger cousin who comes to play.

My Kyle is brave. And as his parent, I've held him down while willingly allowing doctors to cause him pain. I've held him down while they have shoved a tube up his nose. I've held him down while that tube has caused him to bleed. I've held him down while they've shoved another tube up his nose to measure acid. I've held him down while they have dilated his stoma (hole into his stomach) and shoved his button back in. I've held him down and said, "Go ahead." Go ahead, hurt my child. I know you are going to hurt my child and I say go ahead. And I do this by myself. I do this because my husband can't be at the numerous appointments. I do this because who wants to go with me to all the medical things we do. I do this alone 98% of the time. I say, "Go ahead." Go ahead and hurt him. I make sure Kyle knows it will hurt and I say, "go ahead."

I'm the mother of sick children. I am the mother of doctors visits, tests, labs, paper work, jargon, drugs, procedures, and surgeries. You don't know what it means to be a mother of sick children. These are my feelings and I want to explain them to you, but it is like trying to explain how water feels....wet, slippery, slimy, cold, warm, wet, changeable, and ever moving.

My Aiden. My Aiden is my baby, even though he isn't. But I've never met a sweeter, snugglier, lovable boy. He is infatuated with Charlie. He is malleable and easy going and makes a great playmate for his cousins. He is so sweetly and sincerely remorseful. He was big. 9 lbs big. He grew on target. But now. Now not so much. Now we've plateaued. I think, when did we last change the size of your clothes? Why don't you feel bigger? Why do you still fit so well on my lap? Why are you not eating, when several weeks ago you were always ravenous?

Upon hearing his heartbeat today through the doctor's stethoscope at his appointment today, he said, "I hear the beat, beat. My heart is pumping my blood." My three year old. My three year old knows. I worry. I worry about why he is so tired. Why he lays on the floor. Are the drugs not working? Is he telling me his stomach hurts more than usual? Is this vomit disease progression? Does this warrant zofran? Why is he getting out a vomit bowl for bed so frequently?

Why does he spend all morning crying? Why does he cry all evening? Why is he regressing on independence? What changed? Not his diet. How do I comfort him? Where did he go? Why does he hurt? How do I discipline him, while recognizing that he is not my Aiden? Does anyone know?

Charlie is my newest baby. Right in the middle of my boys in weight. Sweet. Calm. Lovable. It is hard to win a smile from her, but the smiles are so sweet. Her nose is such a smile button. Her face screams to be kissed. Even my niece, at 18 months, knows she is something to be protected and loved on. And oh, is she loved on. Yet, she earns the gold medal on slowest eater! A few ounces in 45 minutes. My patience for her slow eating does not even light a candle to her patience for toddler love and play.

We quickly moved her to hypoallergenic formula. She just wasn't tolerating my milk well. The Church's statement on breast feeding states something to the effect of a baby is almost always able to tolerate their mother's milk. Although, I know that my children happen to be in that small percentage that cannot, it hurts. It hurts that I cannot breast feed my children. I wonder if people who see me in public with a bottle know...do they know that I strongly support breast feeding? Don't they see? Don't they see that it is not my choice? Don't they see?

I see her face. And I love her, but my worries: when did you poop last, why does it keep changing consistency, does it seem oily today? Why were you eating 4 oz bottles, 6 times a day, and although it took you a long time, you did; now, getting 2 oz in is such work of coaxing? Why? Why did you become fussy?

The doctor upped her reflux medication today. He changed her formula. He suggested we buy a caloric enhancer for her formula (which we immediately did). We go back in a week to see how she is doing. Right now she is 25% for height, but only 3% for weight. That means Charlie is way too skinny. She hasn't been growing at the right rate; her percentiles have dropped significantly in the last month.

Almost daily someone mentions, "She's so tiny." They see it as dainty, petite, sweet. I am reminded of her growth at every mention. How her clothes aren't getting tighter. How her eating has dropped off. I see surgeries in her future. I worry about the need for a feeding tube. I know how this could go.

I want you to know, most days, we are a normal family. Visits to the zoo, aquarium, and IKEA. Kyle takes karate. Aiden never stops moving and has mastered most every sport on the Wii. Kyle is learning to read and Charlie is strengthening her neck muscles. She likes to be worn. I make freezer meals and worry about keeping Kyle from ripping holes in his pants. And do mountain and mountains of laundry. Normal. Normal. Normal.

Yet, when you find out, you had no idea that my children were sick. Of course you didn't, we are normal. Now, you look at us differently though. We are not heroes. This is just our life. We don't need your pity. It's our normal life. I always carry the necessary medications, I plan our meals and snacks if we are out. Kyle knows what he can and cannot eat and Aiden is learning. Even their cousin knows their specialized diet. I stock their foods at my in-law's and my sister's houses. This is my life. I am nothing to be applauded or told how strong I am. If this was your child, you would do it to. You would. You would step up, without a thought. We are their mothers.

And yet sometimes, when I drive along the eastern bench on the way to Primary's or home from an appointment. Sometimes after surgery when I realize how normal this is. I cry. I cry because I still mourn the loss of "normal" my children will never experience. My Aiden has never had lunch from the blue box of macaroni goodness. My children don't eat cheap McDonalds ice cream cones. Aiden and Kyle have only had donuts once in their life, ones I made that were nothing like the light yeasty goodness I regularly crave. Their lives are different. Will they serve missions? Will they need bowel resections like many Crohn's patients? Will Kyle always have a button?

Kyle starts kindergarten this year. I've started the paperwork. The special forms. The doctor's notes. I had to mark him as disabled for the first time in his life. He is. He qualifies. And yet, I've never thought of him that way. But I do see people stare when they see his button. I know most children have never seen a button. I know his preschooler teacher told his class, "he has a tricky tummy." I know he will stand out. I know attending primary activities will be difficult with all the church pizza and cookies. How will this go? He'll be the kid who has to go to the office every day after lunch to have a bolus feed. Can his little body with a compromised immune system handle the germs? How can I take care of him, if he is gone 8 hours every day? Will I have the knowledge to tell his doctors what they need? Do you see?

Do you see? I thought this time around with Charlie I would be ready. I thought, no biggie deal. Just another one to take to doctors and visits. Another prescription. No biggie deal. But it hurts. It hurts more than I expected. But I don't want pity. I want you to see. It's okay to ask how their health is. It's okay to be concerned. I like people who want to know how appointments go.

But when you ask if you can help, the answer is no. You've never dosed their medication. You've never seen me use their pump. You don't know their diet restrictions. You think it is easy to be gluten and dairy free, but things are sneaky and complicated. Like soy sauce, only few are gluten free. Eggs in restaurants are often mixed with milk. Did you know? Do you know malt is a gluten substance? I trust my mother-in-law, I trust my sister, I trust my sister-in-law. I've shown them. I've told them. I know they know. But you don't know. You've never seen.

If you want to help, I need friends. My kids need friends. I need people to know we are normal. Teach your children, my children are normal. The button is normal. Their diet is normal. They are still children. And your venting, your worries in life, your trials, your children; I want to hear about it. I'm not judging. You are also normal to me and I can be your friend.

**And if you read this far, congratulations, I hope this helps you understand what it is like to be the mother of a sick/different child**


Jenny Livingston said...

I love you. I love those babies of yours. And I'm so happy you posted this.

Ami said...

I can't claim to understand, but I am trying to see. Thank you for being willing to help me see. You have such sweet babies. Good luck with Kindergarten. I worry about Dane every day at school, and you have more, specific worries to add. I hope you and he can have a positive experience. We miss you.

Teresa said...

Holly, this was beautifully written and heartbreaking to read. You always seem so unruffled by all you deal with so it's good for me to get an insight into the real struggles and worries that you face. I miss those boys and can't wait to snuggle and that adorable baby! we are coming to Utah in early July (we are thinking we'll be there between the 3rd to 13th-ish)

Brittney said...

Thanks for sharing, Holly. You are such an eloquent writer. I think it's important for mom's to read and understand things like this because often they have no idea all that is going on in someone's life. It's a great reminder that we really can't judge anyone because there's no way we can understand all the intricacies of their family situation. Your kids are adorable and you're such a great mom to them.

I can't say I know how most of this feels, but I do know how it feels to not be able to breastfeed. I have pretty severe Rheumatoid Arthritis and am on a weekly injectable medication that I can't take when pregnant or breastfeeding (mostly because the effects to the baby are unknown). Luckily, I'm usually OK without the medication during pregnancy, but all my symptoms come back with a vengeance soon after giving birth. So I'm forced to get back on the medication and stop breastfeeding at about 2 months. I definitely see the stares and judgment being waged when I pull out a bottle for my newborn baby. And you know what? I was probably on the other end of that more than I'd like to admit before I experienced it myself. I am a HUGE supporter and proponent for breastfeeding, but I've learned even more from experiencing this that we truly can't judge anyone, no matter how well we think we know their situation. So thank you for reminding me of that again. And you may not think you are strong but you are. So strong and an example to many.

Shaunel said...

Moms are so powerful. Keep that love flowing, and so glad not every day is a dr. visit. Beautiful post, thank you for sharing, and all the best with the Kindergarten adventure.

Mallory Lundell said...

I know you want to be treated like a normal person, but I will still say I am and always have been so impressed on how you just carry on. I know we all just do what we have to do, but I really do admire you. You were sent your beautiful kids because HF must have known you would take good care of them. I am glad to be your friend even if it is just liking your instagram photos but if you lived closer I would be happy to just hang out with you and your kiddos. I can related with the breast feeding situation too I feel like every single time I make a bottle in public I am having to tell someone we formula feed because I don't produce milk, but really I shouldn't have to explain to anyone why we have to formula feed. Anyway thank you for writing this blog post.

Amy said...

You are an amazing woman taking care of your children and their individual needs day in and day out. The fact is--you are meant to be their mother, and there isn't a better mother for them.