The following is a guest post by Ashley Furman. She is a fellow blogger, mommy of two and living with Lupus. I am so thrilled that she has written a post for me and I know that you will enjoy her writing as much as I have. Make sure to head on over to her blog and check it out Oh, my aunt has Lupus.
Being a mom is challenging. I don’t think that statement is a surprise to anyone. Being a mom with Lupus certainly adds to that challenge.
My husband and I got pregnant with our second child when our daughter was only 10 months old. If you are unaware, 10 months is right on the difficult cusp of toddlerdom. Let me fill you in, in case you haven’t been there before- this is the time when your sweet little happy baby starts turning into this autonomous being, who refuses to eat and sleep, and goes into full blown panic attacks every time you leave their field of vision for more than 3 seconds. I quickly began seeking advice on what life would be like with 2 kids under 2 years old, and something I was told often was essentially “prepare for a crazy hard first year.” Some people were more encouraging than others, but I was left in a constant limbo between excitement for the beautiful chaos that would take place, and “Oh God. What have we done?”
Being pregnant with an infant-eventually-turned-toddler was definitely hard for me, especially during the weeks that I had my head shoved in a toilet 5+ times per day. And I reflect on those days often when I’m having a particularly difficult time mothering my kids during painful Lupus junk. Feeling so sick while pregnant but knowing you are still responsible for the life that you already brought into this world is a lot like the dilemma you face as a mom with a chronic illness. (I guess when you can compare your pregnancy with a chronic disease, it’s safe to say they’ve been rough…) You’re tired, you don’t feel good, you would give your left middle toe to stay in bed just a little longer. But your kid is crying and you remember, much to your disappointment, that stay-at-home-moms don’t get “sick days.” You have to get up, you have to make breakfast, and you have to find a way to get through the next 12-15 hours before they go back to sleep and you can be longingly reunited with Mr. Sandman. That almost sounds dirty, but it isn’t, I swear. The bottom line is, you don’t have a choice. As a parent, your kids await. And whether you’re sick or not, I’m a firm believer that if you’re doing it right, parenting will be hard. It’s supposed to be. Children are a gift from God, and I believe He uses the challenges that parenting brings to refine us and to draw us closer to Him. I now consider living with Lupus similarly. Having a chronic disease is a constant reminder of my weakness, but it’s one that Jesus is ready to answer with His own strength, drawing me closer to Him. And how thankful am I for that, because sometimes it’s near laughable at the circumstances that I’m functioning under.
My husband is a second year Medical Student. When you account for time he spends in class and time studying, it more often than not adds up to approximately 80 hour work weeks. Because I stay at home with our daughter Makaila, who just turned 2, and our 5 month old son, Cohen, I definitely feel the burden when my husband isn’t available to help during any hour of the day. However, by the grace of God we were given a baby who, unlike his sister, is one of the easiest, happiest babies of all time. However, also unlike his sister, he still wakes up every 2 hours throughout the night. So although I am dealing with Lupus fatigue on top of standard motherhood exhaustion, the ear-to-ear grins from my toothless babe at 2 am help to keep me going.
Beyond sleep deprivation, having a baby and a toddler has naturally come with its own challenges. Possibly the biggest of which with Cohen has been that he has a mild form of plagiocephaly, aka “flat head syndrome.” We were told at his 2 month appointment what was going on, and essentially given doctors orders to NEVER put him down, in hopes it would “correct itself.”Luckily I was already prepared to do my fair share of baby-wearing, so I had a great wrap on hand (because how else do you take care of a newborn and a 19 month old?) but in practice, keeping him off his head and in my arms at all times has been downright exhausting. (Side-note: I would like to say right now that if his head does round out over time, I am fully claiming it as a fruit of MY hard labor, and not giving any credit to his greedy skull bones. Correct itself? Give me a break. Mom did that.)
So really, in perspective, the most difficult part of having Lupus for me is simply trying to keep up with life while having Lupus. Does that make sense? I guess what I mean is, Lupus isn’t the hardest part of my life. Life is the hardest part of my life. For example, last Sunday, Cohen screamed and cried all night long. Literally. All night. Since it was so out of character for him, I took him in to see the Pediatrician first thing the next morning. Come to find out, the poor bugger had a double ear infection. Then the very next day we found out that my daughter somehow contracted hand, foot, and mouth disease, and she was struggling to even drink a glass of milk without screaming in pain. Totally heartbreaking. A few days later it became apparent that my husband had managed to catch the virus from my daughter, and then he too was hardly functioning. So, all week long I had an entire family of sickies to take care of, including two extremely needy, demanding, and frequently crying children, all while working through my own joint pain, headaches, body aches, and fatigue. That’s just a recent example of how Lupus made some standard life circumstances that much harder. And while things may be less taxing during a normal week, honestly my normal is always hard.
I’m one of those moms who makes a big effort to keep my kids engaged in things other than the television (or iPad, iPod, computer, whatever…) My baby boy won’t be allowed screen time for at least another year, and my very spirited (and thus very energy consuming) toddler has her’s kept to a minimum. To keep children occupied, happy and safe while simultaneously trying to shape them into responsible, moral, gospel-centered, educated, and kind individuals, is no easy task. There are days when I’m so tired that my oldest will get permission to watch an extra episode of Yo Gabba Gabba (in which I have to extend grace to myself, as to not feel like I’m failing her. Perhaps silly, but true.) But the meat of the day is spent together putting together activities that foster her creativity and development. And although he’s still a little tot, the same goes for my 5 month old. There are definitely times I think of how much easier my life would be if I could stick both kids in front of the television and zone out for an hour or two, but alas, my convictions always come up stronger than my desire for a morning of inactivity. So while I’m fantasizing of going back to sleep, what actually happens is I gulp down some form of caffeinated beverage, take a horse pill of ibuprofen if I’m feeling extra achey, and I try to remember that it’s only going to be on the Lord’s strength that I can get through the day in any type of meaningful way. And then I take it as it comes. And it can be good, and hard, and exhausting, but it’s all beautiful. And I’m thankful.
For me, having 2 kids under 2 has already proved to be challenging, no doubt. As is being the wife of a Med Student, as is living with an illness like Lupus. But what I expect from challenges is that they also offer us the biggest rewards. My family brings me amazing amounts of joy. Every day, every hour. How could they not? I was given 3 incredible people to love. And although there are a lot of trying times within the dynamics of our relationships, I am beyond blessed by all of it. I really believe that God is also going to use the challenges of my Lupus in a similar way. If I am handing it all over to Him- submitting to Him my head, heart, and hands, including this disease in its entirety- He will lighten my burdens and I will be conformed more to the likeness of Christ. It’s not like He’s going to leave me hanging as if I’m less valuable to Him now that I’m sick. On the contrary, I think the Lord actually has big blessings He wants to bestow on me in the midst of my relationship with Lupus, and that ultimately, He will use this disease in my life to bring glory to Himself. And although it can be difficult, in the end that is the biggest reward I could ever hope for.
Around this same time I also had a rash on my torso. I went to several different doctors, all of which gave me a different answer, different medicine and nothing proved to work. I was beginning to feel like I was just imagining things. But, I didn’t really know what else to do other than maybe find a doctor that could not only give me answers, but that I could trust.
