Thursday, January 31, 2013

2013 - another year ahead of us

The sorrow that is in my heart at the moments seems too much to bear. I look at a year ahead, and am filled with mostly dread about the challenges that lie ahead. It keeps me awake at night, and makes me just want to sleep in the day.

Our gorgeous baby is 8 months old, and is still on a diet of apple and baby rice cereal. We have tried pear, pumpkin and sweet potatoe, but somewhere along the lines, he has continued to break out in rashes, so we've had to start all over again... again. We took a trip to the shops and used a shopping trolley and shopping centre highchair for the first time. Cameron loved sitting up so high and looking around. But, that evening, his body showed signs of an emerging rash. It took over 3 days to heal with the help of steroidal creams. I had taken as many precautions as I could when using the shopping centre things but obviously it wasn't enough. And so the root of my dread reveals itself... what if our gorgeous baby actually has more serious alleriges than our eldest son?

At this point, I'm going to warn you that this post is about to get very long and very detailed. I keep a brave face for our children. I explain allergies, as a way of life for them, trying to teach them that there is more to life than food, and that there are many other ways they can express themselves, have fun and embrace life. For my husband, I keep my complaints brief and practical. What the problems is and how to fix it. Don't get me wrong, he is always supportive, happy to look after the kids so that I can go shopping on my own and read all the the labels. For my friends, I share a little of my burden, but keep it contained. They know it is there, but I dare not empty it out, for fear I may not be able to stop. I don't want my time with them, to be just about me, or just about allergies. So where do I pour out the depth of my feeling and burden? I like to write in my prayer journal, but my hand would get too sore. So typing seems quicker, so here I am. My deepest sorrows, my heaviest burdens, thrust out into cyberspace where it can scatter, so as not to smother another. So stop reading this post whenever you need a breath of fresh air. There will be little to be found in this post. But in other posts, there will be. I promise.

At 8 months, we didn't know about Matthew's allergies. We were careful with introducing foods, and he always had rashes, especially on his face, despite the use of steroidal creams. At 9 months he was diagnosed with anaphylaxis to 8 of the top 9 foods. Life changed in a way I did not think possible.

While breastfeeding, I had to limit those 8 foods from my diet, but I was still able to have a latte with milk, and one serve of wheat a day. Life seemed hard then, but this second time around, I have had to completely eliminate about 20 food categories from my diet. By food categories, I mean that all stone fruit (one category) is out. That includes peaches, plums, nectarines, apricots, cherries etc. I can't have any berries (another category) - no strawberries, blueberries, blackberries, raspberries. There are about 20 of these groups that are out. If you counted the items individually... easily over 100. I drink my coffee straight, I only have rice milk, I don't use pepper or other condiments like mustard, tomatoe sauce, or any asian sauces. The only store bought food I eat is MacDonald's french fries.While this crazy diet does seem to be working for our son... the implications for what it means for his own diet is mind boggling.

He's started to crawl and loves to climb all over me. While it is delightful to watch, and wonderful at times to be climbed on, there is a constant dread that these signs of progress are also signs that life is about to get much more complicated. Every crumb that falls to the ground must be picked up, every spill or smear on our clothes must be washed. Can you imagine keeping things that clean, with a crazy super active 4 year old boy? I feel terrible for our oldest son, who has to constantly wash his hands, is told off all the time, for dropping food, or for kissing his brother before he's properly washed his face.

Our baby's weight gain has significantly slowed compared to the first 3 months of life. The changes in my diet surely mean my breastmilk is not as rich. His current diet would probably be causing some level of malnutrition since growing babies surely need more than what apples and rice have to offer. His sleep is no where near as consistent as our eldest son, probably because his diet is insuffcient and he continues to need night feeds.

The prospect of going overseas is so far from happening that I don't even bother imagining what that would be like. We do go on holidays to visit relatives, but that will continue to get more difficult. Another year of birthday parties, but this time with a baby in tow. Another year of stress. Our eldest son has made a new friend... another birthday party... more special food to prepare... more kids to be wary of... more adults to be mindful of... more people to convince that life really isn't that bad with allergies. Guess what... it really is THAT bad... it really is WORSE! You have got no idea what it is like to think you could lose your kids in an instant because you weren't watching what some other kid did with their cookie.

One time at a park, I decided to let my older son run around on his own. Afterall, he knew the park, he knew where I was and I really needed to feed the baby. So he went off. After about 10 minutes, after I'd finished feeding the baby, I decided to go and look for him. As I pushed the pram, and couldn't see him, I realised what a terrible mistake I had made. What if I find him slumped on the pavement somewhere because he'd picked up a shiny chocolate wrapper out of curiousity? What is another child had dropped their icecream on the slide he was using? How stupid was I to place my son at such risk, just so I could concentrate on feeding our baby? If you think I'm over-reacting, the next time you're at a park, just consider how many children you see walking around with food. Each one of those kids, everything they touch, is a threat to our son's life. I would prefer those children to be carrying rat poison around, not milk, not icecream, not cookies.

What does the future hold for 2 kids with food allergies? When will it get easier? Not anytime soon... of that I am pretty certain. This year will probably be a breeze compared to the next, when our eldest starts school... boy, will we be on a learning curve then. Sigh, so although I dread this coming year, I think I dread the next even more!

Thanks for reading all the way to the end... it probably wasn't as bad as I thought it might me... often things brought out into the light aren't. And so our story continues...

2 comments:

  1. You are truly an amazing woman Grace, and we are proud to have you in our lives. We can't possibly imagine the level of burden on your shoulders, but we would always have an open arms to share that burden if you ever want to share it with us.

    Yeo's xo

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  2. Thank you loving friends. I know you continue to pray for our family, and that is the best thing you can possibly do.

    We went to the birthday party of my son's new friend, and with my husband in tow, it really was a lot less stressful. He is such a wonderful support that I forget at times I think. That has given me the courage to press on. Saying that, I'm going to decline another birthday party coming up since it's just too much for us parents. Sorry Matthew, mum and dad can't cope with you having so many friends!.

    On a more positive note, we went to see our allergy dietician, and she assures me that there is a chance our son is not anaphylactic. Although his gut allergies are broad, and his immune system very slow in developing, there is a chance he will outgrow all these issues, albeit slowly.

    We've now worked out bubs is allergic to pear and pumpkin.. so perhaps it wasn't the shopping trolley. Next food to try is chicken... here we come!

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