Dear Rare Diseases and complex medical issues,
Leave my family, my children, the F**K alone!
I am so tired of not knowing what is wrong with my children. I am tired of knowing more about something that most doctors (even if that is just the name of a disease). I am tired of finding out that the only people that have open doors for my child(ren’s) issues are across the country, or halfway across the country at best.
I am tired of people, including doctors, telling me “But they LOOK so healthy…” Well, yes, they do, thank God for that and I work my butt off to make sure they stay that way. You aren’t here in the middle of the night as my child throws up over and over again. You aren’t there to wipe their bleeding butts. Or there to pace for hours back and forth with a baby that is in so much pain he can’t sleep. Nor are your here to go with me to the grocery store and be frozen in fear…what do I feed my children? What is safe? Then to brush off that fear and go and read label after label knowing that you need to soldier on and find safe food.
Now we are on a new journey. One of the immune compromised. One where masks and obsessive hand washing are going to become our new norm. Am I scared? Heck yes. I feel like I am going to throw up. Before a fever, was just a fever, and as long as it didn’t get too high then it was a helpful and wonderful thing. Now a fever means we head to the ER because Baby Bear’s system may not be able to fight things off on its own (of course that means we are in the hospital and going to be exposed to more germs- so yay all around!).
As I freaked out last night in bed, listening to my son sleep while he lay beside me, I wondered what life would bring, if I would lose him, how I was supposed to treat him…and it hit me. My son was still the same. We have been going through this for over 2 months and not knowing it. Now that we do, we can take precautions. But my son, my dear little Baby Bear was and is still the same. He is still a baby that will smile at the nurse through his tears after she takes his blood. He is still the same baby that wakes me up hour after hour in the middle of the night needing to be fed but right when I am so tired I don’t think I can handle it anymore he will smile up at me and pat my face and then finally fall asleep (or start laughing and crawl to go play). He still amazes me with how fast he is learning things. He is still my baby!
I cried to a friend of mine who also has a complex child, “This gets easier right?!” She replied with a no-nonsense, “It doesn’t get easier, you just get better at it. And so do the kids. You’re going to be ok. I promise” It made me cry, but in a good way. She was right. This isn’t easier. But I have gotten better at things. And I will keep getting better at them, our whole family will, because we have to!
I know we will fall into a new normal. Because it happens every time we get a new diagnosis. We WILL find our new normal. And that is ok.
When you become a parent you know you will make mistakes, it is human and there is a big learning curve on how to go from being an individual caring for and raising a little person. You just pray those mistakes won’t leave lasting emotional damage or that you will have saved enough to pay for a good therapist if they do (just kidding, shoot for the first one- no lasting damage!). What is horrible about making mistakes when you are an allergy parent, is that your mistake often directly impacts your child(ren) in negative physical ways. Sometimes in very serious negative ways. You now pray that your mistakes don’t cause serious health consequences or death. And sadly I am not kidding here.
The thing about it is, you are going to make mistakes. You are going to forget to read labels or think something is ok only to realize it really, really wasn’t. Allergy parents might be nearly superheroes but even super heroes have off days or get tired.
We had one of those mistakes this past week. I bought some of Baby Bear’s formula from an elemental formula exchange group, I never thought to ask if the cans were the US version or the Canadian/European version. I had not idea that there was a difference. There was, in fact, a BIG difference, the cans we got featuring French and English on the label, and contain soy and coconut oil as some of the first ingredients. Ugh. The US version does contain coconut derived products but not as the top ingredients and it does not contain any soy at all. (Even typing this I feel like banging my head against the wall for not reading the ingredient list).
For three days we fed Baby Bear this formula. For 3 days his symptoms started to come back, sleep was starting to non existent again, rashes, reflux, spitting up so much that he drenched several of my shirts, mucus in his stool, crying, not wanting to be put down, etc…. all of it was happening. I was worried he was failing his formula or the water we had gotten. Crap, crap, crap. Hubby and I were feeling the strain of very little sleep and a very unhappy baby (plus a toddler also reacting to something different too). What I didn’t realize was that he was failing his formula, just not his regular formula.
I was reaching for a new can of formula when my mama gut kicked in and whispered that I should read the ingredients. I did and was horrified by seeing “soy” and “coconut” clearly written. I rushed to the pantry and got the “new and improved” labels. No soy, no obvious coconut. I went through all of our formula and sure enough, I had 4 cans (well, 3 full cans and one empty can) of the bad kind of formula. I spent $100 on those 4 cans and now they were completely useless. I felt like a bad parent for hurting my kid and for wasting our family’s money.
Thankfully, no lasting damage was done. Now, 24 hours later, Baby Bear started sleeping again, spitting up less, being happy to lay on a blanket and “talk” to us. The guilt for hurting my little one is heavy but I am so grateful that it wasn’t worse and that we caught it after one can of this formula and didn’t miss it and continue to feed him the other 3 cans.
There are some days when by 10 am I am wishing I had a big bar of chocolate, a bath, and maybe a glass of wine to decompress from the few hours that I have already had to deal with trying to juggle two children. Or if not wine than a big glass of chocolate coconut milk!
The jump from one child to two has been more difficult than I anticipated to adjust to. Learning how to judge who’s needs are the most important at that particular moment. Trying to juggle more laundry, dishes, feeding schedules, lack of sleep, and maybe throw a shower in there and time to brush my teeth too (ah the luxuries of being clean!).
Then of course add all of the health stuff that I deal with day to day. Making sure that Little Cub gets all of her meds and supplements, making doctor appointment after appointment, calling insurance companies and fighting for things to be covered (formula, regular ped visits, upcoming hospital visits, etc), researching- oh so much researching, calling doctors offices and insurance to follow up about past calls, calling companies to find out about their processing practices or about some ingredient that could be derived from some trigger food, figuring out what food to trial next, and so much more.
Some days I look at the clock and wonder- how on earth am I going to handle the x number of hours until hubby gets home?! How am I going to handle not pulling my own hair out or screaming? How can I turn this day around and feel like a decent parent by the end of it?
I often feel guilty during these days, because a lot of the time my children are just being wonderfully typical children. They are needing things from me at the same time and when I can’t magically split myself in two and take care of them both, one or the other loses it and starts howling like the world is ending. Yes, it is true that mama isn’t as magical as you once thought, my young ones. I can’t sit on the couch and feed brother his bottle AND get what sister needs from the kitchen- RIGHT NOW!- at the same time. It isn’t physically possible…but does that make a difference to either wee one? Nope. They are tired or hungry or need a diaper change and of course that makes them want to cry. And sometimes they just want to play with me. Of course not in the same way or together- at least the two year old doesn’t want me to play with or even hold brother, when playing with her. Little brother could careless as long as someone is talking to him and making faces.
My guilt comes from feeling like I am losing my sanity and have a very short temper. Not because I can’t be in two places at once or because it isn’t perfectly typical for a 2.5 year old and a 3 month old to act in such a ways, because it is. It really, really is very typical. But because we have MUCH harder days. Days were screaming is from pain, not from frustration. Where throw up and diarrhea almost run down the walls (and sometimes literally do). Days where we have spent countless hours at the doctors office and tired small people just can’t handle anymore.
So days like today? When there is nothing really wrong but my nerves are fried and littles are just acting like littles? Shouldn’t I just be grateful for days like today? I should be and I am. But I am also sad and pissed off that I have to be grateful for crazy days that make other parents feel just as out of control. I want to be able to not feel guilty for having a hard time during a typical new to parenting two children hard day.
Update: and then sometimes you later learn that part of that hard day with the toddler was actually her having a reaction build up. Pooping twice during the day, flushing all day, behavioral swings, hives that weren’t very responsive to meds, new-to-her rash on her bum that is quite impressive and painful looking, over sensitive to stimuli, etc… Oh well, I guess things make a bit more sense now.
I am the mother two wonderful and Rare children and am honored to be the step mama to two awesome teenagers.