Monday, February 22, 2016

Walk A Mile

   You know that old saying, "Don't judge a person until you've walked a mile in his shoes"? Most of us learned it in childhood, and rightfully so. It is such an important concept for everyday living as a decent human being. Sometimes it's much, much harder to walk a mile in some one's shoes, and that's where maturity comes into play. The maturity to have true empathy and just realize you have no idea, accept it, and truly respond accordingly. It's a tough, tough concept in such a self-consumed society. But how about I tell you a little bit about what it's like being an allergy mom with an immune-sensitive child? Obviously I cannot describe everything, but I can give you bits of the major things.
My first child made me an allergy mom. We knew at 5 weeks old when her faced was rubbed raw from the friction of her constantly rubbing it on her blankets that something was wrong. Doctors poo-poo'ed me for 4 more months, until she started producing black stools one day, and a Google search told me the color and texture was indicative of old blood being expelled from bleeding bowels. I took her straight to the pediatrician who literally patted my arm, sighed, and said, "Babies make funny-looking poops sometimes, honey. She probably got a hold of banana." We walked out the door and never went back. Through meticulously tracking MY diet for signs of what was bothering my exclusively breastfed baby, I found her skin outbreaks and black stools were directly correlated to a 24-hour period after I ate soy or peanuts. I did my own research, became a meticulous label-reader, began cooking more from scratch to cut all soy and peanuts from my diet, and almost immediately her problems disappeared. She finally outgrew those allergies by age 3, and I was so thankful. A baby with food allergies is terrifying.
   With my second, I was much more prepared, and began food journaling from the start. It only took 3 days after he was born to figure out the correlation between his screaming and projectile vomiting immediately after nursing to my dairy protein(not lactose) consumption. Out went all dairy protein(thank God butter got to stay! It's all fat and lactose!), and his gut issues resolved within 48 hours. Back to the meticulous label-reading for anything I didn't make from scratch. Dairy and dairy bi-products are hidden under different names in everything! Thankfully, he too outgrew his allergy by age 3.
  Blissfully, my third was allergic to nothing. I think God knew I'd need that break to prepare for number four. My pregnancy was with number four was fraught with complications including hyperemesis gravidarum, and I spent 20 weeks on a drug to make me physically unable to vomit because by 7 weeks I was in early kidney failure from the chronic dehydration and general malnutrition. There's now been shown a strong correlation between that drug during pregnancy and children born with multiple and rare food allergies, as well as immune deficiencies. Had I known then what I know now, I'd have sought other options, but it was a new-ish drug to use in pregnancy, true hyperemesis is so rare that there was little data available, and it literally helped stop and reverse the vital organ failure I was experiencing that would have killed both me and my baby.
   We noticed during his first week outside the womb that #4 became incredibly ill any time I had anything with cocoa in it. It stung because I am such a chocolate fiend, but good-bye chocolate. No real problem. During the first few weeks after that, his screaming and stomach upsets went away, but he just seemed fragile. Neither my husband nor I can explain it. Because all our other children had experienced significant vaccine reactions(including full blown measles from the MMR at 12 months) we proceeded with extreme caution with #4's shots. When his 1 month check-up came, we did just two of the four shots they wanted to give him. Then came the living nightmare. Have you ever held your newborn as he stopped breathing? Do you know what that's like? I'm so sorry if you do. It's terrifying. There's nothing like it. The relief that flooded us when he took another breath was indescribable. Then it vanished when two minutes later he stopped breathing again and his face turned blue. A 2am ambulance ride to the closest children's hospital with EMT's shoving tubes down his throat and needles in his tiny veins, then several days in the hospital while doctors tried to figure him out(everyone's always reluctant- often refusing- to say "vaccine reaction"), and he was discharged with a blanket diagnosis of "ALTE"- Acute Life-Threatening Events. Meaning: 'We can't say for sure why, but your kid tried repeatedly to die for a few days. He seems fine now, though. Go on home.'
   What followed was a terrifying summer. Constant illness, usually with respiratory distress, followed by a diagnosis of Laryngomalacia- a now clinically proven and known side effect of the anti-vomiting medicine I had been on during pregnancy. When we did shots, we did them one at a time, pediatrician-approved. Every time, within a week he'd be covered with petichiae- meaning blood vessels would rupture and bleed out under his skin. We'd rush back to the pedi(her direct orders) for another CBC to look for signs of blood disorders while the bleeds were actively happening. After several months of this drama and several appointments with pediatric oncology to rule out every cancer and leukemia they could imagine(Have you ever listened to doctors discuss pediatric cancers, treatments, and prognoses? Do you know what that feels like? I'm so sorry if you do. It's horrifying.), we stopped vaccinating him. He'd had several key series of shots like DTaP and Pneumococcal to protect him over the winter, and we didn't want to further stress his body during cold and flu season(again, with direct approval from and supervision by his pediatrician). Magically, all the petichiae episodes stopped, and his immune system slightly improved. He battled chronic ear infections, but we managed, and they were nothing compared to "ALTE" and subdermal bleeding. Then one day during church he was very noisy in the service so I had the bright idea of taking him into the nursery to play. Almost every child had a boogery face and wet cough, but I stupidly ignored it, thinking if I stayed with him, held him, and played with him myself, he'd be okay and the sanctuary could proceed with the teaching without his squawks. No such luck. What followed was a 3-week, life-threatening battle with RSV and several hospital visits for acute respiratory distress. Have you ever held your child while he struggled to breath, body limp and too weak to move, blue lips, gasping for air? Have you ever wondered if the next breath would be your child's last?  I'm so sorry if you have. The terror is suffocating. We did that for three weeks before he began to improve.
   After the bought with RSV, we began to drastically change our lifestyle. We began intensive probiotic therapy(as well as other natural immune-boosting daily methods), cleaned every chemical out of our house and replaced it with respiratory-friendly products, went to a completely "clean" diet- no preservatives or refined sugars. Just wholesome, made-by-me, from scratch(right down to every bread product, sauce, and salad dressing) meals, and rarely went out to eat.
   During this nutrition-cleansing adventure, #4 was beginning to eat solid foods, and we rapidly found out by exposure that he had a massive number of food allergies, with reactions ranging from eczema that brought his skin to bleeding patches all over, gut inflammation to the point if days spent screaming and pooping blood, croup and respiratory distress, hives, and anaphylaxis. At 14 months the allergist would finally see him after he had an anaphylactic reaction to a tiny, pencil eraser-size piece of eggplant. Turns out, he was allergic to a lot(many of which we already knew): cocoa, apples, all nightshades(tomatoes, peppers, potatoes, eggplant, some berries and cherries), raisins(but not grapes), all poultry eggs and meats, and pork. Things started to click: there is animal protein- specifically egg- in most vaccines. With every vaccine he'd been given he'd been injected with allergic substances, and his body had varying degrees of histamine responses, from ALTE(yep, those first vaccines that the PICU staff didn't want to admit the possibility of DID almost kill him) to subdermal bleeds and rashes. Have you ever had to hold your child down while he screams as hundreds of needles are simultaneously pressed into his back, repeatedly, then sit and watch your child EpiPen at hand, and wait to see if he stops breathing, his heart stops, or his throat closes? It's horrible. We've been through worse, but the allergy testing is its own set of misery.
Once we knew ALL of #4's allergies, we were able to improve his health so much. He's still very delicate, but he's never been healthier in all his nearly 3 years of life outside the womb. The scar tissue the RSV left in his airways that first year is life-long and permanent, and causes complications every time he gets a cold or an allergic croup reaction to an exposure.
Have you ever been afraid to feed your child because he might die? Have you ever been afraid to go out to eat or go to some one else's house because MOST people have no concept of cross-contamination?
Have you ever been afraid to leave your house because MOST people have the luxury of being rather, 'ho-hum, it's part of life,' about childhood viruses? Have you ever repeatedly watched your child stop breathing, struggle to breath, or literally lay on death's doorstep for days at a time, afraid to sleep lest you miss his last moment? Have you ever been afraid to sleep lest your child be too weak to cry loud enough for help to get your attention so you keep yourself awake with pots and pots of coffee all night for so many months that your own heart can no longer handle the stress and you end up in the ER yourself with cardiac issues? 
   If you have, I am so, so sorry we both know this path. If you haven't, please don't pretend you know. Please don't get angry with me or judge me for saying it is selfish to knowingly take your sick children to optional and social gatherings. You cannot usually tell by looking at a person that he or she is immune-deficient, and it is truly selfish to knowingly expose others to illness when you know you and/or your family are carrying it. You don't know who has an immune-deficient family member at home. You don't know who works in critical care, NICUs, PICUs, and oncology units. You don't know who has a family member with a seizure disorder that could kill them with the slightest fever. You don't know who is undergoing chemo or radiation, or has a family member completely immune-depleted due to some illness. Please. PLEASE. Care enough about others to acknowledge that you don't know, and choose not to knowingly expose people to illness.

Saturday, February 20, 2016

Being a Nurturer

I am a nurturer by nature. As mothers I think we're all nurturers to an extent, but some of us have a deeper inclination in our souls to take under our care any one or any thing that has a need, and we do everything in our power to fulfill that. We cannot turn a blind eye to hurt and need. That's how I've ended up with so many animals. I cannot see an animal in need of rescue, know that I have the resources to provide for it, and not do just that. I've always been this way.
Quote by Harper Lee from "To Kill a
   As a child, all living creatures except snakes were on the same level to me, so my kittens and calves were just as precious to me as humans. That's not to degrade the place of humans in my heart- I still was profoundly aware of the sacredness of life, it was just all life that was so precious to me. When I was a child we did not watch TV, but I remember reading in the newspaper when I was ten years old  the story of Susan Smith who claimed her car had been carjacked and her two babies kidnapped. I had no idea who these people were, but it crushed my heart. When it came to light weeks later that she'd drown her babies herself to be rid of them so she could run off with a lover, I didn't even understand the fidelity issue nor did I have the bond of motherhood in my heart, yet still I cried for days, once even yelling at her picture in the newspaper, asking why she hadn't just given her babies to me. I'd have taken them, she'd never have to think of them again, and they could live. I was ten. 
   Even though I feel so deeply, few people know this. They see a strong exterior, hear my words that to most are bold and unfiltered, and assume I am that firm and tough through and through. They couldn't be more wrong. I look strong and busy on the outside because I have developed that shell to protect myself and because of neurological issues(I have the same SPD as my oldest son, though when I was a child I was called "strong-willed," "Jezebel spirit," and "needing severe discipline") I lack a verbal filter for what is socially acceptable, but if they looked close they would see what I am always busy doing is caring for others. 
   The problem with being a busy, doing nurturer is that we get burned out. I've learned over the years that I have to purposefully care for myself, too. That's so hard for me. It's been a difficult years-long lesson that I still find myself on the forgetful end of, but when push comes to shove I know what I need: A break. To be refreshed. Restored. To have my cup filled back up. 
   This sensitivity, desire to love, nurture, and protect, and the need to be refilled has become even stronger since we lost our son last year. After a particularly difficult stretch where life has been pummeling me to a bloody pulp with no reprieve, I wrote to a dear bereaved mama friend and said, "My heart is so heavy. Sometimes heavier than others. Is it a 'thing' that the perma-heaviness makes other things seem to compound so much faster and feel so much harder to deal with at times? I feel like a walking, breathing contradiction. My heavy heart has totally changed my perspective in so many ways, made me so much more grateful for every little thing in so many ways, but at the same time I feel so much more sensitive. Like the weight of things that ordinarily would be not such a big deal are suddenly very heart-breaking and suffocatingly soul-crushing. Do you ever feel that, or am I just a ball of hormones?" Her answer(in part, because I won't violate her privacy and copy and paste everything she wrote): It's normal. As bereaved mothers we'll always be living contradictions. Part of our hearts will always be broken with grief, and the other part will always be here trying to survive in the every day life. We will appreciate the little things- the joys, the depths of pain, noticing the small things most pass by- all the more because of this depth of feeling and new perspective. It's all completely normal for this utterly awful reality as a bereaved mother. We survive by community. Sticking together. Ah yes. That 'filling my cup' thing again. I'll forever be learning this lesson. 

 It's a hard lesson for me. I hate to open up to people. The first 2/3's of my life I was constantly told everything that was wrong about me as a person, and I've seen so many who just seem to want to ooze every last drop of every drama and annoyance in their life on all those around them because they crave attention and validation. As a result, and as a nurturer, I feel like some one always has worse pain, worse problems, more heartache than me, so my 'stuff' can wait, my 'stuff' is not significant, my 'stuff' must be my own doing so I deserve no help, and my 'stuff' would only be a burden to others to hear. Until, that is, I burst from the load of pain. Then people are blown away and respond either in a voice of 'Oh my, I had no idea,' or 'Oh my, what a mess.' The key?  Relationships, true relationships. Did I mention how hard they are for me? I just want to give and give and give, caring for others to show my love, which usually results in me being used and mistreated(my husband says this is constant and in his defensiveness gets very angry FOR me) or else a friend I value so much it pains me to lay it all out there on them, lest  I overwhelm them with the weight of my burden so they still don't know what's really going on in my life. I'm still learning. Still trying. Still seeking the cup-filling community to replenish me and force my heart to let people in. It's not easy.