I started this post a couple of weeks ago when I feeling tearful and overwhelmed. With little opportunity to write between then and now, I am finally getting a chance to wrap it up. So this post is not pretty. It is too long and disjointed and probably sounds like an invitation to my pity party. But that is not my intention. Nor is this meant to be a gripe session or a call for sympathy. It is just real. I think sometimes I come across as though I have it all together and that most certainly is not the case.
I am honestly coming down from a couple of weeks that have felt more stressful than usual. There were just many little things that made life feel hard. The stressors built up and I could feel them stacking up higher and higher until my overwhelmed heart poured out and I just broke down in tears, for the first time in a while.
I am conscious of the effect stress has on me so I try to take steps to relieve some of that when I can. But many days, try as I may, I am stretched so thin that there is no margin to take care of me. As a parent to not just one, but 2 children with a chronic illness, I know I am at risk of compromising my own health and well being for the sake of caring for my children. Much of what I do every day is comparable to the taxing role of any stay at home mom. But I realize that the additional task of caring for two children who need medications and treatments every day is not insignificant.
I definitely notice my stress level rise when I am in constant “mom work” mode and do not get time to rest my mind or decompress. Transitioning to life with 2 children is already a big adjustment, as any mom with more than one child can attest. I am also adjusting to being a full time stay at home mom and I am sure that is taking its toll on me in some ways. I do not want to sound like I am complaining by any means. It was a choice and I absolutely love being able to stay home with my girls. Work undeniably added another layer of stress that I still do not feel ready for yet. But there is no question that when I worked, it did give me some time to break away from my mom and housework duties. It felt a bit freeing to drive somewhere alone, run errands by myself, grab a quick lunch or coffee while catching up on emails, have social interaction with other adults, and just gave me the opportunity to focus my energies on something other than my duties at home. But with the added responsibilities of caring for our girls’ health needs, we decided it was best I stay at home for now. I am extremely thankful for that opportunity but also recognize that it creates an even bigger need for me to break away from time to time.
I believe it is important for any mom to have this opportunity, but as a mom to two children with a chronic illness, I recognize that it is even more vital for me. In addition to being the mom, wife, housekeeper, cook, and chauffer, I also must play the role of nurse around the clock. Giving ALOT of medicine all day every day weighs on a person over time. Between the two of them, I give 40 pills (20 of which have to be opened and sprinkled), 10 syringes of liquid medicine, 1 powdered medicine mixed in drink, 1 nasal spray, 4 puffs from an inhaler, and 2 inhaled breathing treatments from a nebulizer – EVERY. SINGLE. DAY. It’s like my children are sick every day, even though they are healthy. When they are sick, there is even more to give. Many times as I stand at that same place in our kitchen under the medicine cabinet, the place that has become my little nurse station/pharmacy, I get frustrated.
When I am already racing against the clock in the midst of trying to get dinner ready, manage behavior, while hearing my hungry children fuss, sometimes the extra stress of standing there gathering medicine time after time after time makes me angry. Mad that my girls have CF, the whole reason I have to do this in the first place! I know that this repeated stress response can wear on a person over time as it builds and builds, day after day. Without a conscious effort to add in breaks and remove some of those building blocks of stress, it seems inevitable that the stressors will continue to stack up until the point they bring me crashing down.
So why have the past couple of weeks have been harder than usual? Well, there are the typical culprits like trying to stay ahead on housework, make sure everyone is fed, dressed, medicated, bathed, and where they need to be every day. My husband has been overwhelmed trying to meet the high demands of his job all while training for the 30 mile CF Fundraiser hike coming up in April and nursing the knee injury he sustained during this training. He was also out of town on two different occasions over the past 2 weeks. Taking care of the girls entirely by myself for 2-3 days straight from morning until bedtime was exhausting. Last week his travel time coincided with Kelsie being out of school, which meant there was even less opportunity for me to get any downtime.
I also stay on the go. Even though it adds more work to the week to get both kids ready and loaded in the car all the time, I like to get out. I actually think it’s harder to stay home all day. And with my outgoing personality, I find that I need that. And Kelsie is outgoing like me and is always asking to go do something. But when I’m constantly running somewhere, it is harder to keep my house picked up and organized. And when everything is in disarray, I feel even more overwhelmed by the clutter.
Over the past month, Kelsie has started swimming lessons and gymnastics. And this week we added T-ball to the mix. So she currently has swimming on Sundays, dance on Tuesdays, T-ball on Wednesdays, gymnastics on Thursdays, and T-ball on Saturdays! Some may criticize that I am overscheduling her. In some ways I agree and am aware that I need to consistently assess the situation to make sure it is still enjoyable for all of us and more beneficial than hurtful. It may be making me slightly crazy running around every day (around a 6 month old’s feeding and nap times no less!), but she wants to go, enjoys it all, and most importantly, it keeps her active which is our main goal. It is vitally important for her to stay active for optimum lung health.
Both girls have had coughs and have started more medicines. Kelsie has been coughing for about a month now which hasn’t been extremely stressful because I feel like it is her reaction to the spring allergens abundant in the air right now. But it is also something I have to keep my eye on and be mindful of. We just started Zyrtec and a nasal steroid spray. So I’m hoping that will help and that we can avoid antibiotics.
Mackenzie has been sick. She developed bilateral conjunctivitis first and we started eye drops. And last weekend she started coughing and now has the full blown cold with congestion and runny nose. She didn’t sleep well earlier in the week which is rare for her. She hasn’t woken up in the middle of the night in MONTHS, so when she wakes up, I know something is bothering her. She was so congested and couldn’t breathe through her nose. She is now coughing terribly in the mornings to the point of gagging. And has been wheezing when she wakes up as well. She has red watery eyes, a really hoarse voice, and just looks pitiful. She just started a 10 day course of antibiotics. Adding another medicine to the mix!
Kelsie’s behavior has been challenging at times as well. This is another reason it is important for me to keep my stress level under control. When my stress elevates, my patience plummets. And when I am feeling impatient and on edge, I have a foul attitude towards her which provokes more bad behavior. It’s a cycle that needs to be interrupted. And I know my mood sets the tone.
Mackenzie still won’t take a bottle. It doesn’t really worry me because I know alot of breastfed babies go through this. Like anything else, it is a season and will be over before long. But it would offer me a little more freedom to run errands if I could leave her with someone during feeding times. Even when she is hungry, she still acts like she doesn’t know to suck on the nipple. My wonderful NP friend is a GI provider and part of the Feeding Team at UNC and recommended we try a new nipple, Calme by Medela. She did take about an ounce from it at one point but otherwise, hasn’t been able to drink from it either. I have tried a regular nipple, a cup, and now this and she still continues to just gnaw at the nipple. We just started adding solids a few weeks ago and she hasn’t been thrilled about them. She’ll get there when she is ready though.
They also increased the dosage of her reflux medications, adding an extra medicine to be drawn up at night as well increasing the dose of Eryped (erythromycin) to 1.3ml three times a day. This means I have to draw it up in 2 syringes each time. Each time we add even the smallest things, I feel my stress level starting to rise. So I recognized that I needed to do something to ease this burden in order for me to not only feel less stressed at feeding times, but also make sure I could maintain compliance. When there is already so much to do, it is easy to forget to give a medicine, especially if it is new or at a different time than you are used to. And trust me, I am definitely not always perfect at giving all their medicines like I am supposed to. I try really hard but sometimes you just forget! Or you’re gone and don’t have all the extra meds with you. Guilt plagues me when I realize I forget something. So to help with this, I started a new system a week ago and it’s working quite well. I have been drawing up the medicine in batches and labeling them. It is given 3 times a day with meals so I give it with the 7am, 1pm, and 7pm feedings. (She is transitioning to just 4 feedings a day so on those days I give it with the 7am, 11am, and bedtime feedings.)
It has been EXTREMELY helpful to just grab the syringes already prepared. And easier to just grab for when we are on the go as well (which is almost daily!). She also takes Prevacid and this is a tablet that has to be dissolved in water and given with a syringe. I found this pill holder at Dollar Tree and it is working out even better than expected. Now that an additional night time dose has been added, I was afraid I would miss too many doses if I didn’t come up with a system.
She takes 1 tab in the mornings and 1/2 tab in the evening. So I have divided them up and stack them in the order she takes them. I add the water right into the cylinder and draw it up from there. Before I started this, I was always having to shuffle around to find a clean medicine cup to mix the pill and water in. Once I use one, I unscrew it from the stack, rinse if out, dry it, add a new pill, and put it at the bottom of the stack. And if I don’t have time right then, it’s easy to do it later as long as I keep ahead of it so that there is always a dose ready when it is time. Really these little things have made a BIG difference in helping to minimize the steps I have to take at feeding time.
I am still working on how to get places on time, feed myself breakfast, take a shower, make my own health appointments, keep my laundry caught up, my dishes clean, and my house picked up, but maybe I’ll get there one day. Until then, I am just giving myself grace and reminding myself I am doing the best I can do. Everyone handles stress differently and I know I am not always the best at managing mine. But it helps me to identify the triggers that seem to weigh me down the most and try to target those specific areas. For me, giving so many medicines to my children every day is high on my list of stressors. And that is not going to get any better anytime soon. So it definitely helps me to find ways to make that job easier and minimize my steps.
Sometimes stress is self-induced, like procrastinating and starting a project the night before it is due. Other times, it is forced upon you. I am in a position that forces more stress on every area of my life yet at the same time, requires I manage that stress in such a way that I can remain strong enough mentally, physically, and emotionally to give my girls the best care possible. It’s a balancing act most days. Some days I feel like I’m a sinking ship and others I feel like I have much more of a handle on things. Most of the time I’m somewhere in between. I am still learning how to work through this daily stress without letting it consume me or take away the joy in my life. But thankfully, I know I can rest in this truth:
Come to me, all you who are weary and burdened, and I will give you rest.
I am human and I fail and I don’t always look to the Lord when I’m running around feeling stressed and overwhelmed. But when I do, I sure feel a lot better! I have ran the race of suffering before and I persevered. And I know I can do it still.
…we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.
And no matter how hard the day is, the good always outshines the bad…