Family Life

One Year Later- an Update on Faith

It’s been a while since I’ve published a post here; 2019 was quite a year for our family, and many have asked about Faith and her health so I thought I’d update you a bit on how she’s doing. For more background information, read here and here.

These past few months we’ve been reflecting back on what our life looked like one year ago and I’d describe it as fearful and uncertain. We weren’t sure what our future would look like: if Faith would be dealing with a chronic illness her entire life, if mobility would always be an issue or concern for her, if our family plans and her life would be dictated by her illness. Only God has the answer to those questions but I’m so happy to say that it has not been the case for us so far!

Diagnosis

Faith’s original diagnosis (after several hospital stays and misdiagnosis) was Juvenile Rheumatoid Arthritis (JRA) which is an auto immune condition causing inflammation in the joint, usually affecting several joints. After a repeat MRI, the Rheumatologist diagnosed her with Chronic Recurrent Multifocal Osteomyelitis (CRMO) which is a bone inflammation condition. It can spread to other areas but so far it has only affected a few bones in her foot. It is also an auto immune condition, has similar symptoms as RA and is treated similarly. We continued the path of treating her for inflammation and she’s been in remission since last spring! Praise God!

Treatment

For treatment, she had an initial round of steroids, when she was completely immobile, which drastically took the swelling and pain down. Since then, she’s been on a daily, very low dose of Naproxen (Aleve) which we will will start to wean her off of in the next couple of months. We have also been treating her naturally with diet, alternative medicine (supplements, chiropractic, essential oils, light therapy), and prioritizing overall health for our entire family.

We have found that a major trigger for her is gluten; if she has just a small amount she spikes a fever and complains of not being able to walk. For that reason, we have become very strict eliminating that from her diet. Our family has been gluten free since before this when we found out that Charles had a sensitivity as a baby, so we all eat the same which makes things easier for everyone. We limit other inflammatory foods as well, especially our sugar, which we have noticed runs our bodies down and everyone’s just more prone to be sick in general.

We’ve also ensured our life at home is as organic and toxin free as possible. We’ve always focused on eating as clean as possible, growing our own food and prioritizing organic, grass fed, pasture raised food, but over the past year we’ve made this a non negotiable and become quite strict on it, at least when we’re at home. We’ve become even more careful to avoid toxins as well which has helped our entire family. I’ve personally always had an issue with allergies and sensitivities to chemicals, so it only makes sense that her little body, already having an immunity issue, would also react negatively when exposed to fragrances and toxins on a regular basis, so eliminating this has been a priority in our home.

Family Life

As far as her feelings toward it all, she has always been such a trooper and still is. She takes her medication and supplements without complaint (mostly) and understands the need to have a diet that may look a little different than others around her. I think it definitely helps that her whole family is in it with her. We all go through similar wellness treatments for our own health so I’m sure that helps her not feel singled out. Our chiropractor even gives the other kids “tickle adjustments” if they don’t necessarily need an adjustment so no one feels left out. She’s amazing. 

Faith will occasionally say “remember when I couldn’t walk?” but other than that she doesn’t really talk about it much. I think she knows that the different measures we have to take is helping so that may be a small reminder to her but other than that, its not really a topic of conversation for her. I’m so glad she’s been able to move on from it! She still has had a great interest in medical care since her hospital stays and all of the doctor visits. It’s pretty hilarious, there’s not a day that goes by that one of us or her dolls are not getting a “blood test”! She is definitely our brave one at the doctor, that’s for sure.

Thank you everyone who has prayed for her and for checking in with us to see how she is doing. It helps so much having such a loving community. It’s so good to feel “stable” with this condition, we are praying that as we wean off medication that our natural efforts will sustain her remission and we’ll be able to maintain it long term.

I don’t know what our future holds, but I thank God every day that she is well today and can be a normal little girl, running around, dancing, playing in the mud, swimming, climbing trees with zero pain. We really don’t take it for granted, even just having the ability to walk. We lived in a state of fear for quite some time and have learned a lot about fear and uncertainty. It’s a part of life, sure, but we don’t have to go at it alone. God is always with us, always for us, and always has our best interest in mind. I don’t know what I’d do if I didn’t have that truth engrained in me and have the community around us to pray us through anything we are going through.

Random Thoughts

Need to be Free

Twelve years in Christian school just didn’t work for me. Now before my mom and dad read this and think they wasted a ton of money and time driving me 40 minutes to school every day, and all of my teachers think their teaching effort was wasted, stay with me, I’ll explain. I did what I was supposed to do, memorized the scripture, sang the songs, wore dresses 3 times a week, went to chapel every week, etc. But I didn’t understand why I did all of these things until after I left school. If I’m being honest, not until years after leaving school, and having kids did it really hit home for me. So after growing up in a Christian home, going to church weekly, and 12 years of private, Christian education, it took another 15ish years after for me to understand why I did all of those things, and grumbled and complained about it for so many years.

We’ve developed a saying around our house when Charles started crawling and the girls would chase after him, grab him, and treat him like their real life baby doll. He’d fuss and whine because he did not want to be controlled (still doesn’t), so we are constantly telling the girls, “let him be free!” Well that was me growing up, I just wanted to be free, we all do, we’re born craving control. I saw my school, church and childhood as just a bunch of rules and I had no control. I wouldn’t say I was sheltered, I had boundaries, just didn’t fully understand why they were set in place.

So when I left home and went to college, I felt like I was finally free. I had the independence I craved, I was in control of my life, made my own decisions, supported myself. I was “free” to my own standards, and man did I mess up. This was a false sense of freedom. Because I felt like I was in control, I then spent years after that feeling guilty of all of the mistakes I made, after all, there was no one else to blame. But that’s not the life God has for us, feeling guilty and shame for our mistakes. There’s another way, true freedom we have in Christ.

I had always heard the verse from John growing up, talking about “the Son sets you free, you will be free indeed” and I just thought that the whole idea was such an oxymoron. So you mean I’m free, but I can’t do what I want? So you mean I’m free, but I have to go to church and memorize scripture? I’m free, but I can’t wear that outfit like she has or go to that movie with those friends? You say I’m free, but why do I feel guilty every time I do something the Bible considers wrong? This doesn’t sound very freeing.

Striving to do like Jesus did and following Gods commandments gives us freedom that seems indescribable, but I’m going to try to explain it from my understanding. I once heard the concept explained as telling your child not to put a butter knife into an electrical socket. They really want to do it, it looks really fun, they’re so curious, but as a parent, you tell them not to do it because it could be really bad. (You could insert a ton of other examples here that’s just the one that has stuck with me for years.) In the same way we tell our kids what to do and not to do, God knows whats best for us. He sets parameters for us to live by FOR OUR OWN GOOD.

But he knows we are going to mess up, just like we know it’s going to take our kids a few times for them to get it right when we’re trying to teach them something. He’s training us, leading us, coaching us and He is not the condemning, angry, punishing God that I had in my mind growing up. He picks us up and loves us, just like we do with our kids when they mess up. He forgives, He doesn’t shame, He gives us chance after chance to get it right.

THAT my friend is freedom.

It has taken me way too long to fully grasp the concept of freedom in Christ. I say fully grasp but I don’t think I’ll ever fully grasp it, it’s a constant challenge to completely understand how amazing this freedom really is. Now that I somewhat get it, I just want to shout it from the roof tops! If only I understood this growing up, it would have saved me so much heartache and confusion. But sometimes that’s not how God works, I had to learn it the hard way and I now appreciate it so much more than I would have years ago.

I’m currently in a women’s Bible study discussing Galatians and the topic of freedom; it has been so encouraging. As a Christian, I’m constantly in battle with myself between what I want to do and what the Spirit wants me to do, and Paul says that’s normal and to be expected. He warns us to not take advantage of this freedom, however, to do whatever we want. But as we learn to obey Him, as we mess up and learn, and then mess up again, and learn again, we grow. Life isn’t considered easier per say, but we appreciate Gods love and mercy so much more because we know we don’t deserve it. We feel free to try again, free from our worry, and free from fear. Our perspective and outlook shifts.

My view of the Bible is completely different than it was 15-20 years ago. Where it used to be a bunch of rules, it’s now a guidebook. Where it used to be a bunch of stories to memorize, it’s now examples of people who are just like me. Where it used to be condemning, it’s now encouraging. Where it used to be a chore, it’s now a delight to read. In an age where we are constantly striving for information, googling everything, seeking truth and answers, I thank God every day for His word. It’s never changing and always applicable. I have trust in Him more now than I ever have because of the freedom I feel and I want every single person in this world to feel that.

Paul says in Galatians 5:1, “It is for freedom that Christ has set us free. Stand firm, then, and do not let yourselves be burdened again by a yoke of slavery.”

Easter is next week and what a perfect time to celebrate our emancipation from the slavery of our past mistakes. Romans 6:23 says the “wages of our sin is death,” but we are free from the guilt, shame and weight of our sins because He died for us and rose again.

So in all the years I spent in Christian school, I never got it. I never got how amazing God is and why we so desperately need Him. All those years were laying the foundation of my faith, BUT no matter what our background, whether we’ve heard and studied the Bible all of our life or we’ve just heard about Jesus for the first time. He died and rose from the dead for ALL of us, we are ALL His and we ALL get to experience His unconditional love for free.

Family Life

Update on Faith

Thank you all for your kind words and encouraging us through everything we’ve been experiencing with Faith and her rheumatoid arthritis diagnosis. It’s been about a month and if we have learned anything these past few months since all of this started, anything can change quickly, so we of course, are always on or toes. This past month has given us a lot to swallow, a lot of changes, and a lot of trusting God. More on that, but first, where we are today with Faith, medically for those who have been asking…

(For background on this, visit my first post here)

Since we received the diagnosis of rheumatoid arthritis, we’ve had a complete diet overhaul with the guidance of a functional medicine nutritionist, to identify triggers for her. They suspect some food sensitivities and deficiencies that we are testing for but have not received final results as of yet. She eats really well, but even healthy foods may be contributing to inflammation. It’s going to be a trial and error process, but if we can at least figure out the diet side of this and work on healing her gut from all of the antibiotics she was exposed to, that’s a start.

About a week before Christmas, Faith had another flare up, still only in her foot. We had not been on any medication at that time and started some homeopathic remedies and saw some relief, but ultimately had to put her on an anti inflammatory medicine. We noticed that it still was not improving after a few weeks and that the flare started looking very different than it had ever looked before. Instead of overall swelling and redness, she had a large, red, bulge on the instep of her foot, no where near a joint, and the rest of her foot looked normal.

We feared that this was not rheumatoid arthritis and something else so on New Years Eve (always on a holiday or weekend, always) we headed to the pediatrician to get their take on what we were seeing. They agreed that it didn’t look like arthritis and said this was over their heads, it looked like a massive infection to them (different spot than the previous infection). They advised us to go to VCU hospital but was then able to get us into the orthopedic that day. The orthopedic also agreed this didn’t look like arthritis but wasn’t sure that this was an infection either. It thankfully didn’t appear to be spreading rapidly like before, which was good news, but after an X ray didn’t give us much information, he ordered another MRI.

The MRI wasn’t able to be scheduled for another 2 weeks and her foot was worsening. We were told that we needed to have a very low threshold for taking her to the ER, so we tried red light therapy (stay with me here). We were terrified of another hospital visit if we didn’t get to this quickly and we were just waiting to have this MRI. We had read about red light therapy and thought we had nothing to lose so we did it and noticed DRAMATIC improvement just after one treatment. We continued it for a few days and her swelling went down an entire inch (I know, she had more than an inch of swelling on that little foot) and the redness shrunk a few centimeters. It didn’t completely heal it but it kept us from the hospital while waiting for further testing, so I call it a success.

She had the MRI…our 4 year old laid completely still during that loud, scary, test for 40 minutes. She is such a rockstar. And unfortunately the MRI was not as conclusive as we’d hoped, but I somewhat expected that. I’m thankful, however, that something serious wasn’t glaring at us, but it’s very frustrating still not knowing exactly what’s going on with her. One thing it did conclude is that she has fluid in multiple joints and her bone is being compromised. It’s either a rare infection, fungal or bacterial, that is hard to treat, or rheumatoid arthritis or another chronic inflammation disease.

Our next step is trying a steroid as a diagnostic tool, which we’ve been so hesitant to do, but our alternative is surgery to biopsy the fluid. Unfortunately, any natural or homeopathic remedy that we’ve been trying is not working quickly enough and we don’t want her to have long term bone damage. The doctors have been hesitant to try steroids in the past in case it’s an infection as that would suppress her immune system fighting it and make matters worse. Now that her foot is better than it has been since the initial flare up, if the steroids make things worse for her, we more than likely won’t have to rush to the ER as long as we are keeping a close eye on it. If her foot improves on the steroid, that will indicate a chronic inflammation disease like rheumatoid arthritis. If it doesn’t improve or worsens, we’re looking at an infection.

So that’s where we are today- trying a steroid and so far she seems to be somewhat improving, which points us back to RA, but only time will tell. She has been limping or not walking since before Christmas so we just want to do what we can to get her better AND figure out what’s causing it. I admit, it’s been a rough few months. We’ve been trying to create some sense of normalcy for our family but it’s so hard when we have this constantly over our heads. Not just the worry about what’s going on with her, but parenting a 4 year old who is in long term pain, but still needs to follow rules, have discipline, etc. And also parent her twin sister who is not in pain but feels the need to be treated the same, claiming she has random, convenient “foot pain” too. Just managing their limited understanding about all of this, and their frustration, has been tough a tough situation.

I think the only thing that encourages us is that we know this is not forever, we are completely in God’s hands. Whenever I’m in doubt or having anxiety, scripture is poured over me. I’m reminded….

Nothing is impossible for Him if we have faith (Matthew 17:20-21).

He is the vine, we are the branches (John 15:5). He carries our burden, not us.

He gives us strength when we put our hope in Him (Isaiah 40:31).

To cast our burdens on Him (1 Peter 5:7).

To not worry about anything (Matthew 6:34).

That He will give us rest when we need it (Matthew 11:28).

Thank you everyone for praying and encouraging us. We are confident that we’re on the right track in figuring this out and hopeful that we’ll receive clarity soon. I also really appreciate everyone who has reached out with ideas about possibilities or remedies you’ve heard of or have experienced personally with these types of symptoms. It makes us feel like we’re not alone in this process. Thank you so much!

 

Adventures in Parenting, Family Life

Insert Coffee Here

I have another grocery shopping story for you. This should really just be a series because my most ridiculous parenting moments are somehow always at a grocery store. Maybe I just spend way too much time gathering food for our family, either way, here‘s my previous post if you’d like to read it.

I used to be in a pretty good rhythm about going to the store with the kids, but lately, with all the chaos in our family and lack of routine, I’ve been either going at night after the kids go to bed or ordering online for delivery or pick up. This particular time I convinced myself we can do this. We can go to the grocery store. I completely psyched/caffeinated myself up, used my most patient, pleading voice with the girls preparing them for our trip, and had our list and coupons ready. We were golden.

Side note: when I was in my 20’s (before marriage and kids, and before grocery delivery and pick up) I despised shopping during the day because the parking lot would be full of minivans and mothers with uncontrollable kids every where. Little did I know that I’d one day be one of those mothers. I wish I understood then that getting there may have been all they could do that day. It may have taken every fiber of their being to just make it to the store. I should have extended grace to them, or considered it my ministry to give an extra hand to overwhelmed mothers at the grocery store.

Back to the story I thought I’d never be writing…

Everything was going so great! (famous last words). I had the baby in the cart which is always a delight because he’s just the king of our family and knows it through and through. The girls listened really well, stayed close by and only threw in a couple extra things into the cart that we didn’t have on our list when I wasn’t looking, and it was produce so who could argue?

I had a completely full cart when Faith’s foot started to hurt. Lovely. So in the cart she goes, on top of all of the groceries.

I have to insert here that when we go to the grocery store, I don’t know if its the fact that I have twins, an adorable smiley baby waving to everyone or the sheer pity that I’m shopping with 3 young children, we attract a lot of stares and comments. It’s probably a combination of all of those things, but I just accept it and move on with purpose, racing to get through the check out line before someone loses it.

The rest of the trip went well, June went into super helper mode since Faith was immobile and Charles was still happy as could be. After we checked out, the girls asked to see the rooster. At Wegmans, there is a rooster that comes out of a barn every hour, on the hour, and the girls look forward to it every time. Whenever I tell anyone without kids about the rooster they look at me like I’m crazy, or they’re wondering how they could have possibly missed a barn and a rooster. It’s not a real rooster, just something I’m sure they added to the store to simultaneously help and hurt parents, especially those with children who can’t tell time.

Waiting for the rooster on another grocery trip in which I decided to attract even more attention to the ridiculous chaos by adding a gigantic balloon. I’ve clearly lost my mind.

I looked at the clock and we had 3 minutes, sweet, perfect timing. So I parked us in front of the barn to wait for the rooster, which is conveniently in front of the coffee shop. I felt as though I needed a reward for this excursion, or at least a pick me up to make up for all of the energy that this trip just drained out of me. So I grabbed a cup while we waited.

What was I thinking? How was I going to carry a cup of coffee, push and unload a heavy cart full of groceries under 4 year old Faith, effectively steer 4 year old June walking (you know if you have anyone under the age of 5 that “steer” is an appropriate and very useful verb here), and handle a baby who is obsessed with grabbing every cup in sight? This is not going where you think its going. You think I’m going to spill the coffee don’t you?

You’d think wrong.

We’re chugging (pun intended) along through the busy entrance, I’m successfully avoiding all the baby swats for my hot coffee cup when JUNE decides she can’t walk. What.

Her foot hurts from when she dropped a cup on it 15 years ago and you know, the pain comes back whenever it’s convenient for her, and I must give her sympathy because we’ve had a long drawn out foot saga for her sister and we can’t leave June out.

So what do I do? I beg and plead with her more than I’ve ever begged in my life, short of getting on my knees in the entrance of Wegmans, because that would have certainly looked weird, right? So I do something that DOESN’T look weird, I offer her a piggy back. I’m rolling my eyes right now at the sight of this- this had hot mess momma written all over it. How did I think we’d make it to the car in this state, all while CARRYING A CUP OF COFFEE???!!! Who did I think I was? A celebrity? Carrying a cup of coffee like its an accessory? Like I have an extra hand? I wish I had a picture of this to show you, I’m sure someone does because it was that much of a spectacle.

Thankfully someone had pity on me and offered to push the cart of 2 children plus groceries, while I carried my 4 year old and cup of coffee- not spilling a drop.

I haven’t taken them to the grocery store since….

 

 

Random Thoughts

Seeds

We talk a lot about gardening in this house. As much as we talk about it, you’d think we’d actually know what we are doing when it comes to gardening or at least have one! Not yet, this year we plan to get a garden set up at our new house and I can’t wait. Not only for the good food right outside our door but also all the teaching possibilities for the kids!

The girls used to pick veggies from our garden at our old house and only half would actually make it into the house.

We talk about gardening in different ways because it paints a clear picture. I guess you’d consider us health nuts and we’re trying to teach our kids what good food and not so good food is. To do this we tell them they need to grow a good garden in their tummy in order to stay healthy. Things that grow in a garden, fruit and veggies, plant good seeds in your tummy so those are the things you want to eat a lot of. Things that don’t grow in a garden, your tummy won’t like so eat less of it in order to keep all the plants in your tummy strong and nourished. Who knows what is going on in their mind or what they’re actually picturing when we talk about this. But they ask us all the time if something grows a garden in their tummy and we see that it influences what they eat or don’t eat so I guess it’s working!

We also talk about the Fruit of the Spirit and seeds as Jesus did in the Bible- creating healthy soil in our heart by planting good seeds and not letting bad seeds in (Luke 8:1-15). We tell them when they see something that isn’t good on TV or a character has bad behavior in a book we are reading, it can plant bad seeds in our heart, like weeds in a garden. If we have too many weeds, our plants can die and it can’t bear good fruit like God intended (Matthew 7:17-18). But if we fill our hearts with good seeds, reading our Bible and spending time with God by praying, we will have a healthy garden.

They understand this concept as well and tell us all the time that a certain book or something they see on TV or something they witness has “bad seeds”. Faith just yesterday told me that she didn’t want to read a book we got from the library because there was a kid bullying another kid and she was afraid that it would plant bad seeds in her heart.

My point? We have such great 4 year olds that already have wisdom and discernment DOWN thus our parenting is done!

Not at all, my point is that our children understand this simple concept that we, as adults, do not. My point is that I can so carefully describe this to our kids, that I can remind them to guard their hearts (Proverbs 4:23) but I can’t seem to do the same or I think this doesn’t apply to me because I’m a “grown up”.

Sure I can tell them that chocolate doesn’t grow in their tummy so they can’t have it and then hide in the pantry with a mouth full of chocolate myself. That’s just part of being a mom, if you want to ignore the whole hypocrisy point of course, but in this example, chocolate is medicine so I’m thinking I’m exempt.

But your heart is way more important than a piece of chocolate. Jesus said,

“Make a tree good and its fruit will be good, or make a tree bad and its fruit will be bad, for a tree is recognized by its fruit. You brood of vipers, how can you who are evil say anything good? For the mouth speaks what the heart is full of. A good man brings good things out of the good stored up in him, and an evil man brings evil things out of the evil stored up in him. But I tell you that everyone will have to give account on the day of judgment for every empty word they have spoken. For by your words you will be acquitted, and by your words you will be condemned.” – Matthew 12:33-37

So if one day I will be judged by what comes out of my mouth, and my mouth speaks what my heart is full of, I better be sure to have a good garden in my heart right? But why do I think that the bad and good seeds don’t apply to me sometimes? Why do I think I can watch a simple guilty pleasure show and it not affect my heart? Why do I think I can engage or be a part of negativity or gossip and it not affect me? I don’t think I’m being extreme by saying we need to be counter culture about this, it’s THAT important. We need to guard our hearts just like we tell our kids to, just like Jesus told us to. What’s so amazing is that God gave us His word to teach us and protect us, no matter what age or stage we’re in. It’s all relevant, always has been and always will be.

Family Life, Random Thoughts

A New Year

I’m a sucker for newness; I love a fresh start, new possibilities and opportunities. I realize that not everyone operates that way, Charlie and Faith, in particular, are much more thoughtful and prefer advance warning when something is new and then ample time to adapt. I have a hard time remembering that sometimes. I’ll have a day when I wake up, rearrange all of the furniture in the house, go some place we’ve never been, and then make dinner using all completely new foods and wonder why they are so uneasy. Meanwhile, June and I are in “what’s next” mode. It’s so great that God made us different because their hesitancy when something is new slows me down when it’s necessary and my fast paced, always looking for the next thing pushes them out of their comfort zone a little. Charles…well, he just goes with the flow no matter what we are doing with very little complaining (unless I’m cooking dinner of course, he saves all of his complaining for then). I just love that child.

I think everyone can appreciate the newness of the New Year and want to set goals for themselves. I recently heard somewhere to not set New Years resolutions to FIX something because you’ll almost always fail- to set a goal, and the habits will follow. I think of things I want to do or goals to work toward all of the time, but if I write it down and publish it for the entire world to read, it has to happen right? So here are a couple of my goals for the coming year and some of the habits associated with it.

1. Goal: Vary my personal knowledge

I haven’t always loved to read, in fact, I absolutely dreaded it in school. I was queen of cliff notes for book reports. I never read for pleasure until college, when I had some health issues so I had to take a semester off and somehow I started picking up books for fun. Since then, I’ve read a portion of a book, probably almost every day and crave it. I have complete ADD when it comes to it (which I need to work on) because I’m constantly reading at least 5-6 books at a time. I can’t get enough of it and want to encourage our kids to love books as well, which I believe starts with the parents reading.

Some of my current reads, not including a couple novels I’m working through

What I’ve found though is that I am what I consume. If I’m reading all about functional medicine, diet and autoimmune diseases, that’s all I’m talking about (sorry guys, been a bit consumed lately about Faith’s diagnosis). If I’m digging into the Bible and reading about living Biblically, I’m more positive and encouraged to live more like Jesus. If I’m reading about living in the woods with limited contact with actual humans, I might start feeling a little depressed and sorry for myself. That’s the power of reading and stories, they really affect you as you invest yourself in them, which is amazing, but also important to be mindful of.

For that reason I want to ensure I’m varying what I’m reading and to do that I want to start purchasing a new book every month for myself, different books, novels, short stories, non fiction -all different subjects and authors, pushing myself out of my reading comfort zone. We go to the library weekly and I’m always putting books I want to read on hold, but there’s something to be said about actually owning a book for yourself. I see the importance for the girls when they get a book they get to keep “forever and ever”. They are in awe that they don’t have to return it to the library and show it to everyone who enters our house.

Personally, there will be times that I’ll come across a book I want to read and the library either doesn’t have it or there’s a long waiting list so I just shrug it off and forget about it. So, if I’m in the habit of purchasing a book every month, I’m able to gift myself a new book when I’m actually interested in it and I get to read it over and over (and write and highlight and do whatever I please) gaining new perspective and knowledge each time I, or anyone in the family, pick it up.

2. Establish a Daily Routine

I’ve read and heard from multiple sources that consistency and routine is essential for young kids. I’d argue that it’s also essential for adults, but this past month has put us in survival/Christmas/birthday/get through the day with as little crying as possible (for everyone) mode. With everything going on, routine has been thrown out for the most part. I guess that’s normal around the holidays, but I’m ready to establish a routine again even though part of me loves the freedom. It will look a little different than in the past since we are home much more than before and less mobile because of Faith’s condition, and I feel like I run a restaurant cooking all day every day trying to battle this disease with diet (more details on that to come). This has been sort of a blessing for us because we needed to slow down as a family, spend more time at home, but with that, we still need structure to our day or the girls will ask if it’s time for lunch at 9:30 am and ask to watch TV all day, and I’ll just keep losing my patience with the constant fits they throw every time I tell them no.

Planning the days and weeks also prevents me from getting to the end of the month thinking “oh whoops, all those homeschool activities I wanted to do this month have to be done this week!” I’m learning to give myself a lot of grace in this area, especially recently, but I still want to be intentional with our time together, even if it just means an established reading time every day.

I have other long term goals that I’d like to work toward but these are my immediate habits I’d like to adapt, I’d love to hear some of yours! Also, are you a sucker for change like me or prefer consistency?

P.S. Please send me your book recommendations!

Family Life

Faith

Our family has been through a lot in the past couple of months, so I’d like to take some time here to fill you in on what’s been happening with our little Faith, what’s to come, and how to pray for us. I truly believe that prayer changes everything, and God is in control of every single detail of our lives so thank you so much for praying and caring so much.

We’ve received so many questions about what exactly happened, and because this case was such a mystery to us and many doctors, I’ll provide a lot of details in case the details of what we went through is helpful to anyone else who finds themselves going through something similar.

In the middle of the night on October 31, Faith came into our room screaming saying “my foot doesn’t work really well”. She couldn’t put any weight on it but there were no more symptoms, no injury that we could recall and her foot looked identical to the other, just extreme pain. The next day she spiked a fever, redness started to appear on the top of her foot and she was in even worse pain, especially at night, all night. The following day we were at the pediatrician with an infection, cellulitis, in her foot and were given antibiotics to prevent the infection from spreading as it can very quickly with this type of infection. Antibiotics weren’t helping so days later we were admitted into the hospital with IV antibiotics for 4 days. They feared a bone infection which can be very serious so she had an MRI. It showed no bone infection, just cellulitis so we continued IV antibiotics until she could walk and then she was sent home with oral antibiotics. Faith is tough y’all, I’m absolutely blown away with her courage. She didn’t understand fully what was going on but she became everyone’s favorite patient because she was so sweet and tolerated everything so well.

A week after finishing her antibiotics her foot swelled and a fever crept up again. The pediatrician put her back on the same antibiotic (clindamycin-a very aggressive and yucky antibiotic) and after 6 days on it, still the same symptoms. We were sent back to the hospital fearing that a bone infection was either not picked up on the MRI or had developed since we were there before. She went back on IV antibiotics, this time a different, stronger one- vancomycin, and started to show some improvement. She received a bone scan of her entire body (our child laid completely still for 15 minutes, amazing) to see if a bone infection showed this time, as well as rule out any other scary cancers like leukemia. The bone scan came back clear, Praise God! But what was causing this pain and swelling? We saw so many doctors there and they all seemed stumped. Three days later we were discharged with a prescription for a NSAID and instructions to follow up with a Rheumetologist.

We don’t have autoimmune diseases in our family; and except for the occasional sickness, we are relatively healthy, eat very well (organic, vegan and gluten free- a diet we adapted a few years ago to combat chronic issues I was having), so we were skeptical. We met with a pediatric rheumetologist and he confirmed that she has Juvenile Rheumatoid Arthritis, an autoimmune disease. Her immune system is essentially confused and attacking her own body. There’s no telling exactly how she got it, it could have been her body fighting cellulitis. She could have not had cellulitis at all and this was the arthritis all along (which drives me CRAZY because of all the antibiotics that she was on to treat what we were told over and over was a very serious infection). It could have been a prior infection or illness that she experienced but her identical twin, June, did not which would explain why she had this and not June who has the same DNA. But he was confident that he could treat this and she’d be fine, just put her on long term anti inflammatory drugs and steroids when she needs it and no one will ever know she has this. I couldn’t handle the idea of putting our sweet (almost) 4 year old on so much medication and so I asked if there were any environmental causes or dietary changes that we could make to alleviate the symptoms instead of medication and he didn’t seem optimistic about that approach but agreed that we could try no medication for now and see how she does.

This appointment was about two weeks ago and she has seemed very stable, not worse or better but she is still limping and her foot gets tired occasionally. It’s truly heartbreaking seeing a child who loves to run around and explore to refuse to go outside because she’s afraid her foot might hurt. We do understand that this could be a lot worse and consider it a huge blessing that we are able to treat this hopefully before it becomes debilitating. We are working very hard to get to the bottom of this to get our sweet girl back to normal. In addition to our own constant research, we are working with a great dietitian who practices functional medicine and specializes in autoimmune diseases. We are looking at our diet primarily, nutrient and mineral deficiencies, that may be making symptoms worse for her as well as working on healing her gut after all of those antibiotics. And most of all we are praying for wisdom, healing, and direction.

I’m constantly reminded that God has His hand in this and He will guide us, give us peace, and that His love is never failing.

“”Though the mountains be shaken and the hills be removed yet my unfailing love for you will not be shaken nor my covenant of peace be removed,” says the Lord, who has compassion on you. ”

– Isaiah 54:10

I don’t think I’ve lost faith that God has us in the palm of His hand and loves us through every circumstance, but I’ve wondered why is this happening to Faith, why has our family been so rocked these past couple of months with hospital stays and doctor visits stressing and separating our family, and why now? Oh and why add in a stomach bug shared by our family during her second hospital stay, a baby who decided to stop sleeping, and extreme separation anxiety by everyone? It has taken me a while to see anything positive in this situation and I’m usually an optimistic person.

I recently thought about the what ifs- what if the opportunities and commitments we had in November didn’t fall through before all of this started? We wouldn’t have had the time to dedicate to getting Faithy better.

What if we didn’t decide to homeschool our children? She would have missed at least a month of school, all while June would have gone to school which would have made things really complicated and would have pulled them apart even more, isolating Faith.

What if we are going through this NOW and looking at diet triggers and changes so that we can avoid a more serious illness LATER in our family? What if this started now instead of when she’s older and I have less control over what she eats?

What if my husband and I were not on the same page about any of this? Thank goodness this experience has only brought him and I, as well as our entire family, closer and given us all a greater appreciation for all that we have and especially our health.

“For my thoughts are not your thoughts, neither are your ways my ways, declares the Lord. As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.” -Isaiah 55:8-9

I’m starting to think that God has used all of this to remind us that He IS in control, no matter what we do, read, or treatment route we decide to take. I started looking back over the past couple of months and really saw how He ordered our steps. He timed all of this during the holidays, a natural season of thankfulness, celebration, and a time of reflection so it’s been very hard to forget His amazing love and sacrifice for us by sending his Son to the world.

“She will give birth to a son, and you are to give him the name Jesus, because he will save his people from their sins.” -Matthew 1:21

We are so grateful for this community, our family and friends who have helped us so much through this time by praying with us, listening to our concerns, encouraging us, offering advice, cooking for us, helping with the kids and just loving us so much. I can’t say thank you enough for all of you!

I hope you all have a wonderful Christmas and time with your family. I will try to keep you updated as much as possible about how things are going. Thank you thank you thank you for all of your prayers!

 

 

 

Random Thoughts

Grateful

My fingers are still numb from running this morning in the freezing cold, but I couldn’t help taking advantage of all the family in our home to help with the kids and get out for an hour of peace, and now some quiet to share what’s on my heart. I felt all sorts of feelings on my run as I reflected on the past year and where we were a year ago. I took in our sweet new neighborhood, the beautiful fall leaves and the crisp air and felt an overwhelming sense of thankfulness.

I’ll talk a little about our home in another post, but for a little background, we moved to our current home a year ago when I was about 8 months pregnant with Charles. Every single day that goes by Charlie and I say to each other something we are grateful about with our new house.  God was so faithful through the entire process and we are forever thankful for all that God has done for us in this past year, our family expanding, and the people we’ve been able to have in our home, our lives feel so enriched.

Since moving, our house has been slowly filling with furniture and we are forever adding things to our to do list. If we’re being honest, we kind of feel underwater with our to do list and very little time (or energy) to do any of it.

Yesterday, the day before Thanksgiving, Charlie and I were bustling around the house cleaning and doing last minute preparations before our family arrived. We both were a little stressed. Our entire house was littered with toys and dirty laundry. It was 1 pm and I still hadn’t cleaned the kitchen from breakfast. I wasn’t being the nicest mom (or daughter-sorry mom) either. The girls asked me every 3 minutes when their grandparents would be there and every response I gave them was a little less kind than the last. In addition, I was growing bitter cleaning up the house on my own while they simultaneously made it messier.

I’m always telling the girls when they’re grumpy that they need to go upstairs and have an attitude adjustment and come back downstairs when they can be sweet to their family again. So once my inlaws arrived, I did just that…I went upstairs and took a nap. Lord have mercy I needed that nap. God used that time to completely shift my perspective. Something hit me, my kids will not remember what the house looked like, if the turkey was dry or if dinner was “on time”. They will remember the mood, and something I’ve learned is that momma’s mood tends to dictate everyone’s mood. The last thing I want our kids to remember about the holidays is that mom was stressed out, paying no attention to the kids or sitting down to enjoy our family, but that was exactly the track I was on yesterday. Thank you God for stopping that train.

Moms and dads, enjoy days of rest, especially today. Don’t let your to do list or idea of perfection take the joy out of the holiday season. Even if your home is not perfectly decorated, you burned dinner (did that last night…), or your kids are having temper tantrums every hour, what matters is the time spent with loved ones because you never get that time back. Use it wisely, tell them why you’re thankful for them. Or if that’s awkward (I know that can be awkward) write it down for them to read later. Give yourself grace every day and always remember to be grateful for His faithfulness.

I hope you have a blessed Thanksgiving!

Random Thoughts

Twins: When does it get easier?

A few weeks ago, I was shopping ALL BY MYSELF (thank you in laws!) when I saw a mom pushing a double stroller with two infant car seats, a backpack diaper bag and Starbucks in hand and my mind flooded with memories.

I wanted to run to her and say “I have twins too! They’re almost 4! I used to have the same stroller!” And she’d probably meet my eyes with a nice smile and say “great, have a good day.” OR, oooooorrrrrrrrrr she could have responded with the same level excitement and we’d talk back and forth with the usual questions between moms of twins and 5 minutes later we’d know everything about each other and become best friends. Honestly, the latter is more likely because that’s just how twin moms roll. And even moms with 30 year old twins approach me with that level of excitement.  It’s this amazing, community where we’re the only ones who get each other, and I thank God for the moms I met when the girls were babies and are still amazing, encouraging friends today.

Faith & June at about 4 months

I never caught up with the stranger, it would have required me running across the parking lot and that would have been just weird, so we’ll never know the outcome of that conversation; but I imagine that somewhere along the line she’d ask me when does it get easier? I’d have to respond honestly, through bags under my eyes, “I’m still wondering the same thing almost 4 years later.” Granted, my sleep deprivation is not from the twins, but from my super busy, teething 9 month old, nevertheless, the twins exhaust me more than anything I’ve ever experienced. I don’t think anything has gotten easier, things just change along the way.

Instead of worrying about whether or not to wake up the other twin when one wakes up in the middle of the night, I’m just trying to get them to stop jumping around like monkeys and go to sleep (isn’t it always about sleep? Someone please tell me when it stops being all about sleep) after a long day of  talking over each other asking “why” EVERY SINGLE MOMENT ABOUT EVERY SINGLE THING ALL DAY LONG.

Instead of two crying, cranky babies, I’m breaking up yet another argument between them and patching hurt feelings.

Instead of managing two babies into EVERYTHING and saying “no” 4738920789542 times a day, I’m managing different learning styles and teaching two completely opposite kids the same thing at the same time. I’m constantly amazed how God designed these girls with the same DNA to be so different in so many ways.

At the end of a long day recently, my husband and I finally got them into bed, crying (them and me), but they were laying down and looking like they’d soon be sleeping. We looked at each other exhausted and I said “How do we do this? What are we doing wrong?” He responded, “nothing, they’re twins, it’s always going to be harder than anything else.”

James 1:2-4 says, “Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.”

I told you guys I just love the book of James…

During that conversation with my husband, we started talking about how having kids has changed us, for better and worse, but it got me thinking about why God gave us twins; why did He think WE are capable of raising them? We often wonder that after having really rough days, but I find comfort in that He has an amazing plan for us and our family. There is nothing easy about raising children, twins or not, I’ve learned that in the past 4 years. But something I’m learning now is that God is using those hard days, those trials, to shape us as parents, individuals, and children of God. Leaning on Him and persevering through trials is imperative if we want to “receive the crown of life”.

So I don’t know when it gets easier, all I know is that every older parent I’ve ever met says it goes by so fast. And now the second time around with our little Charles, I’m seeing that and not taking it for granted. I’m trying to embrace every stage, every question, and every challenge because one day we’ll miss this. And I’m finally realizing that I need to celebrate (yes, celebrate) all the challenges motherhood brings me because it’s really shaping and maturing me for His use.

Random Thoughts

My Instagramed Life

It was 6:06 am and I heard the baby stirring in his crib. My alarm went off at 5:30 so I could drink a cup of coffee, spend time reading my Bible and get a few things done before the baby wakes and ESPECIALLY before Miss June comes downstairs. She wakes up like a rocket every day and I need to prepare myself daily for her zest for life. The baby usually wakes at 6 but I just realized I had done nothing for the past 30 minutes except for drank (inhaled?) my coffee and stared at our fireplace that I’ve been wanting to redo since we moved in 9 months ago.

I quickly opened my Bible to James because I knew I needed to read something before I started the day and I just love the book of James. The entire book is highlighted, written in, underlined, and circled (including that little “box circle” that you do when you underline something but that’s not enough, it needs a circle too…just me?). This is part of what I read:

“But if you harbor bitter envy and selfish ambition in your hearts, do not boast about it or deny the truth. Such “wisdom” does not come down from heaven but is earthly, unspiritual, demonic. For where you have envy and selfish ambition, there you find disorder and every evil practice.” James 3: 14-16

Y’all. I had been very disobedient to God, which is ironic because I’ve been preaching obedience to our girls all day, every day. After reading this, I immediately picked up my cell phone, found the Instagram app and deleted it. I put my phone down and walked away from it.

I had an unhealthy relationship with Instagram and I had been denying the truth. Before kids, I deleted Facebook. Like deleted, deleted, not just deactivate or hide it. When I decide something, it’s done and I can be extreme. I have a very sweet husband, by the way, who is oh so patient with me and my rashness. Anyway… I got so fed up with the lack of quality time with people in my life. We all know what everyone’s up to via Facebook so why is it necessary to actually meet up or talk or have a face to face relationship? I wanted to focus on quality over quantity. I think it helped, but then I became a mom and most group communication and events are on Facebook so I’ve since rejoined for that reason keeping limits on my time and use as much as possible.

So then my relationship with Instagram began. I loved the pictures, the single, beautiful snapshots instead of an entire album, which seemed very overwhelming to me. I loved sharing small glimpses of our lives, a perfectly filtered and cropped picture that is not a completely true, accurate look at our entire day to day, maybe just one good moment, but its fun right? I loved following people that I knew, didn’t know, inspired me, encouraged me, just to remind me that there is life and things happening somewhere outside our four walls.

But who was I following? I followed interior designers sharing their portfolios for “inspiration” for my professional career as a decorator. I followed runners who motivated me to go out and run faster and longer than last time. I followed friends of mine, some I see on a regular basis, most I don’t. I followed moms who seem to have it together that encouraged me to do better every day. I followed inspirational people who had a seemingly daily quote that made me think.

But what affect did these posts really have on me? Was it providing me wisdom or just noise? And am I capable of accurately discerning that every time I open Instagram?

  • The interior designers’ pictures just exposed all the dissatisfaction I have with our current (new) house that I don’t have time or unlimited budget to decorate instead of being grateful for this amazing home God provided. Let’s be real, if I need design inspiration for a client or my own home, I’ll have no problem finding it online somewhere, in magazines, in stores, etc.
  • The runners made me feel guilty and mad at myself that I didn’t run that morning or make the time to run as much as I once did. Giving myself zero grace that I have a nursing baby and 3 year old twins that require seemingly all of my attention for 12+ hours a day.
  • The friends and family I followed made me feel like I should also be on an amazing vacation or dress my kids in cute coordinating clothes, or go do that fun outing with my family. They’re real people, not celebrities, so why not me? I envied them instead of enjoying every moment my family and I have together, whatever we’re doing, while covered in sweat, dirt, spit up and could all probably benefit from a glance in the mirror before leaving the house or at least a shower.
  • The moms I followed made me feel terrible that I don’t have it together like they do, have a clean house, perfectly behaved kids, and throw a magazine worthy party for every occasion. Following them made me doubt that I have what it takes to raise these kids and especially homeschool.
  • The motivational speakers and leaders are great, but really, shouldn’t I be looking primarily to the Bible for advice and truths instead of a human being?

Gulp. No, I don’t have the ability to filter the noise, and it was affecting me big time.

So why was I even wasting the very little alone time I have doing this to myself several times a day? What good was it doing to me? It was stealing my joy, and it certainly was not making me content. The Bible is very clear on this topic.

And then, what if I was adding to someone else’s discontent in their own life? I honestly had never thought of this until that day and I feel horrible that I had been that self-centered. What if posting pictures of my kids made a childless woman feel envy? What if pictures of the one corner of my home that is clean and decorated made another mom feel incapable like I do when I look at those pictures? This thought breaks my heart. I’m so sorry if this is you, from the bottom of my heart.

So why am I sharing this struggle with you? Why be so open and honest with the world about this personal issue I’ve had? I’ve asked myself the same thing many times and have gone back and forth about sharing. But I know I’m not the only one who has struggled with this so my hope is that if there is someone out there who can relate to this, please know that you’re not alone and maybe a step back from these platforms is necessary as it has been for me.

I’m not saying social media is terrible, or even Instagram specifically. In fact you’re probably reading this blog via social media (thank you for taking the time, by the way). There are very healthy ways to use it, I’m just being honest saying that maybe it wasn’t healthy for me. Since I became a mom, I’ve been re-evaluating how I spend my time and asking if it’s really adding value to my life or the life of our family. Sure we need downtime and outlets, but what is our life purpose as Christ followers? Being disciples of Christ and expanding the Kingdom of Heaven. And social media was affecting that in a bad way. It tore me down, which I know is not what God wants for us. And what kind of Christ follower, wife, mom, daughter, friend, and sister can I be if I’m not feeling the full peace, joy and contentment that God so freely gives us as His children?

“But the wisdom that comes from heaven is first of all pure; then peace-loving, considerate, submissive, full of mercy and good fruit, impartial and sincere.” James 3:17

I highly encourage you to read all of James 3 and 4, I can’t say it any better myself. I’m just so happy that God spoke those words to me when I needed them the most.

By the way…. If you need further proof that I most definitely do not have it together as I’m sure I attempted to prove on Instagram at some time… While writing this, I could hear the girls downstairs playing so nicely together. I finished writing and went down to find them having a picnic on the carpet with real cups and real water that I’m positive came from the toilet. The verdict is still out whether the water was ingested. Sadly, it wouldn’t have been the first time. At least I cleaned the toilets this week?