You are so strong. I’ve heard that phrase or a variation thereof more in the past three years than in the rest of my life. What changed? I didn’t start lifting weights and I certainly don’t work out. Maybe Marvel showed up with their super soldier potion and I’m now a female Captain America. In truth, nothing changed. Not physically anyway. What changed were my circumstances. The thing is when people say that all I can think of are the times I’ve spent completely prone on the floor beside my son’s bed in body racking sobs. I think of the numerous times I’ve started crying on the phone after hours fighting with the insurance or trying to get my disabled son, Disability or Medicaid assistance. I think of the 2 BOXES of tissues I went through in one afternoon in the hospital. These things are not strong. I am not strong. Truth is I’m a mess. My house is a mess. When someone says, “I don’t know how you do it!” the truth is neither do I. Well that isn’t entirely true. The correct response is, “I don’t.” I don’t do it and I’m not strong. Not on my own. God is. It is only through God the tears finally dry up. It is only through God I get up off the floor. It is through God I am able to try and try again with insurance and other things. It is through God we make it to (almost) all of our doctor appointments. It is only through God I am able to get out of bed two or three…or more times a night. It is only through God and His love for me that I am able to have a smile most of the time. He has given me the friends and family in my life that support and truly help “bear my burdens”. (Galations 6:2) He has given me just enough to know I am nothing without Him. It is only through God that I make it through each day. I am not strong but my God, my Savior, my Lord who loves me so much He sacrificed His Son for me…He. He is strong.
And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me. 2 Corinthians 12:9
Instead of Sunday School hour, our church body has “breakfast hour”. Each week, a couple of the ladies team up and bring in breakfast. It’s genius really. Especially for those of us who are always running behind and never really have time to feed our kids on Sundays. I’m 100% behind it, except when it’s my Sunday for breakfast, and then I’m just 100% behind schedule! This past Sunday morning, I had my usual plate of food with three small mouths bumming off of me. Let’s face it, mom’s food is always better. So I have my one and a half year old, who has recently learned the word “bite”, standing there yelling it every five seconds. Then my son is sitting in his wheelchair in front of me giving specific instruction on the the size and content of each bite. The five year old is also there, with her own plate mind you, requesting bites of mine. As I’m trying to sneak in my own bite here or there and keep up with everyone, someone says to me, “Renee, you are a good mom.” That statement made more of an impact than I’m sure they ever meant for it to or realized. You see, this past week has been…rough. I guess that’s the best way to describe it. Tuesday, I had an appointment scheduled at 3:40. I had everything planned out. Take Trevor to therapy at one, go pick Luci up from school at three after we get out of therapy, head home, trade off with daddy and go to my appointment. Luci ended up staying home from school Tuesday so after therapy, we went to Taco Bell for happy hour freeze drinks. Then mommy needed a happy hour Salted Caramel Chocolate cookie from Arby’s. We get home and 30 seconds later in pulls my husband. He usually works Monday, Tuesday, and Thursday nights so that is not what I’m used to, although I do love it. This particular night, because it’s not our normal routine I forgot he was going to be there. (Thank goodness I bought myself two cookies so I could give him one and pretend I didn’t forget). Unload the kids and go about my day. Around six, it suddenly hits me….I forgot my doctor’s appointment! I felt all kinds of stupid. Fast forward a bit to Thursday. I had someone message me that morning about something I was selling on the Facebook marketplace. We discussed a time to meet and agreed on 7:30 that night. That night, I was in the kitchen working on dishes and pick up my phone. Check my messages. I have one that says “I’m here”. It was 7:36 and I’d completely forgotten….for the second time that week! Friday, I get a group text confirming a Bible study on Saturday and that it started at two. I responded saying I thought it was at one. It was then verified it was indeed at two. Saturday rolls around and at 12:30, I’m getting ready to go. As soon as my husband got home from his Lowe’s run, I was running out the door. I knew I was going to be late. I wasn’t going to make it by one. I sent out a text in the group chat that I was running late, only to be told it didn’t start until two.I know, I know. I had JUST been told that the day before. Somehow, my brain took the previous conversation and flopped the times in it. Needless to say, this momma had a mini breakdown as I drove. I called myself stupid. I wondered what in the world could possibly be wrong with me that I could screw up that much in one week. So you see why it was a rough week for me. You can see why something as small as saying, “you’re a good mom”, was such a blessing to my heart. It encouraged me. It helped me remember that I don’t always mess up. It wasn’t a hard thing for that person to make that statement. It was genuine and heartfelt and took five whole seconds of their day. How often do we have opportunities for such encouragement and not take them? How many times have I been too caught up in myself to focus on others? To build someone up? Maybe that person was having a bad week. Maybe they just lost a loved one. Or maybe no one has ever shared God’s love with them. How many opportunities to share Christ’s love have I missed because I’ve been too wrapped up in myself? Whether with a brother or sister in Christ or someone who does not know the Lord personally, how convicting is that thought? Proverbs 25:11 says, “A word fitly spoken is like apples of gold in pictures of silver.” Those words that morning were golden to me. Have I, have you, given any encouragement today?
Three years ago today, we officially received a diagnosis of Spinal Muscular Atrophy for our son. That day I made a Facebook post to share with all our family and friends. In it I stated that our family was facing “some adjustments”. I look at that statement now and just laugh. That was probably the biggest understatement of the century! I look back over these last three years and I can’t even remember what normal was then. (Let me just say, it wasn’t really normal then either.) Three kids two and under is a whole other type of crazy. I’m so glad I didn’t know then just how many adjustments were coming; moving homes and chaning vehicles to accommodate a wheelchair, acquiring numerous medical machines, five hospital stays, learning terms I thought only doctors and nurses knew, adapting and changing our daily schedule more times than I can count, missing numerous outings and family get togethers due to illness, still getting up numerous times a night to roll Trevor over or readjust him or just check on him while sick. I know more about our insurance policy than most people that work at the insurance company do. Our entire thought for the future has changed….bye, bye retirement age. It’s not just the way we think about the far away future. You have to change the way you view next week or the next day, even. Just when you think you’ve hit a good groove, something changes. More extensive therapy is needed and they want to do a five week inpatient stay. Something is regressing and causing concern and needs to be addressed. The weather that day requires you to stay indoors for health concerns. Trevor caught a cold and now you need to be home 24/7 to do his machines every four hours and try to avoid another hospital stay. You realize you have to make that dreaded ER visit. Do you know how many texts/phone calls have to be made to readjust a day when you need to take your child to the hospital? Neither did I! And I still inevitably miss something! We’ve had to adjust the way we parent our other children. They don’t understand that if we could choose to not give Trevor as much attention as his health needs, we would in a heartbeat. They don’t understand when we pray for Trevor to stay healthy and get stronger all the time that it’s not because we love him more. Every time my five year old tells me, “everybody loves Trevor more than us”, it breaks my heart a little more. Don’t get me wrong, my children are ALL loved and way too spoiled by so many wonderful people in their lives. How, though, do you help them understand that the hour you have to spend with Trevor at bedtime is necessary to his health, and not because you love him more? How do you explain to them that when he yells for you because he’s losing his balance, you HAVE to go now because he WILL fall over? How do you help them see that you HAVE to sit by him every time because he needs help to eat? How do you convince them that ambulance rides and IVs are not something they are “missing out” on? I do agree with them that it isn’t fair that Trevor has “experienced” those things and they haven’t. Not because it’s something cool or special but because it’s not. No child should ever have to experience those things. We’ve adjusted our definition of strong. Physically, Trevor may be weak but he is, without a doubt, one of the strongest people I have ever met. If I had known three years ago that all these things, and many more, were in our future, I think I might have just given up. Each one of these things is a scary, hard change in it’s own way but no certain one was insurmountable. All of them together seems impossible. We’ve all heard the phrases “step by step” or “little by little” but do we ever realize just how true they are? Looking back over these past years makes me so grateful and thankful to the Lord that He didn’t reveal the big picture all at once. I’m glad He still hasn’t and that He won’t. That He only gives us as much as we can handle at the time. When we are in the moment, each obstacle on it’s own seems impossible but He knows exactly how much we are able to handle. He doesn’t ask us to do it on our own! Isn’t that a wonderful thing?! He can handle it all. Whatever it is you are facing today, no matter how impossible it may seem, God is with you. He is for you. You can make it through if you run to Him, lean on Him, trust in Him.
Casting all your care upon him; for he careth for you. 1 Peter 5:7
Faith. Its such a small word but it carries so much weight. Three years ago today, I was driving away from Children’s hospital in a complete fog, functioning solely on auto-pilot. I’d just heard the words Spinal Muscular Atrophy for the first time in my life and I heard them in reference to my son. My baby boy. My happy, little man who did nothing but fill others lives with joy. We had to wait for the blood work and the official diagnosis of course, but I knew…I knew it was going to be confirmed. In the next few weeks, I shed a LOT of tears, went through a lot of emotions: denial, anger, pain, heartbreak. I asked God a lot of questions: why? am I being punished? is it my fault? why him and not me? I also mourned what I thought was the loss of the opportunity to have any more children for fear of this dreaded disease. I came to realize over the next few months how little my faith actually was. Matthew 21:22 “And all things, whatsoever ye shall ask in prayer, believing, ye shall receive.” This is the verse I claimed during my last pregnancy as I prayed and prayed our baby would be born without SMA. One would think through Trevor’s diagnosis, treatments, illnesses, and that pregnancy my faith would have grown. Maybe it has but as I was reading in Matthew again just recently, I was hit once again by the subject of faith. In Matthew 14, we find the story of Peter walking on water. As we continue reading, we see Peter loses sight of Jesus and starts to doubt because of the circumstances around him. Jesus then responds to Peter, “O thou of little faith, wherefore didst thou doubt?” (vs. 31) Little faith? Little? PETER WALKED ON WATER! He was the only one with enough faith to do that and yet, even then, the Lord still called it a little faith. I don’t know that I would’ve taken that step. As I read through each subsequent chapter of Matthew, the subject of faith continues to come up. There are instances in chapter 15 and 17 of Jesus healing. That topic hits very close to home for me because I have prayed that Trevor would be healed but I don’t think I’ve ever prayed that believing it would ACTUALLY happen. All to often I think I fall into assuming a miracle wouldn’t be God’s will so I don’t believe or expect Him to perform one. And that is a lack of faith on my part. Yes, I am totally open to accepting His will being the answer “no” but I should pray expecting miracles. He is a mighty God. He is the God of Heaven and Earth. He calms waves and storms, He heals the sick, lame, and blind, He casts out demons, He defeated sin and death! Lord, I believe. Help thou my unbelief.
Maybe I’m showing my age some here but I used to love watching Gilligan’s Island. I loved Mary Ann and Ginger and Skipper and Gilligan were my favorites. I don’t remember a ton of details about the show but I do remember they always thought they were going home…that they were almost done being stranded. I also remember when they finally did make it home they felt out of place and missed the Island. Tonight, I referred to bedtime in our house as my own personal Gilligan’s Island. It was a joke of course but it also holds a lot of truth. Bedtime for 4 kids shouldn’t take that long right? WRONG! Bedtime in our house takes at least, at LEAST, an hour. I always have big plans. 30 minutes tops. It’s all worked out, laid out in my head. Inevitably it goes just like tonight did. I say “okay, time for bed. Go get your pjs on.” The girls head upstairs to get pajamas (miraculously this happened quickly and without drama tonight) and I carry Trevor into his room, change his diaper, start his shaky vest (this particular machine goes for 20 minutes and has to be done before I can do any of the others), and pull Netflix up on the Kindle. I then move on to make drinks for all the kids. This started when we transitioned from bottles, I’d let them take a cup of milk to bed and it grew into a monster from there. Now one gets chocolate milk, one strawberry, one doesn’t like milk but still wants a drink, and Trevor isn’t allowed milk at night to try to prevent mucus. Of course, Lauretta is in the stage of wanting to be a “big helper” so she wants to hand deliver all the drinks so as I wait for her to do that I proceed to get Trevor’s nighttime dose of elderberry and Luci is currently on medication for an ear infection so I get that as well. Then on to putting poor, teething, grouchy Lauretta to bed. Once she’s all changed and laying down, its upstairs to the girls room. After hugging and kissing their 8 stuffed animals each (another ritual that was done innocently and took on a life of it’s own) I give them each a hug and kiss and proceed to the drama. There is always drama. They may only be 7 and 5 but they are girls. All the while Lauretta is screaming in her room and Trevor is yelling for me because his vest is already done and I’m way behind schedule. 40 minutes after I started the whole mess I finally get back to Trevor’s room to do more machines, check his pulse ox, get him all hooked up with his overnight sleep mask, and make sure he’s turned and situated correctly. It was about this point …around the hour mark….that I sent my husband the text about Gilligan. I was doing the dishes when he got home 5 minutes later and after going to check on kids in each room reported back that they were all sleeping and “were so precious when they’re asleep all snuggled in their bed”. The more I think on it, the more I think I was spot on with my analogy. Bedtime may seem like a 3 hour tour to me and during those times of craziness I feel like I’m stranded on a deserted island all alone just trying to survive but someday, someday I’ll be “rescued” and my kids will be all grown and they won’t need me anymore and I know when that happens I’m going to miss that island. That isolated place of motherhood where I felt all alone and like their was no hope of rescue on the horizon. And I’m going to look back on it and think, you know I really didn’t have it so bad there. It was kinda nice. I miss that. So enjoy your time on your personal Gilligan’s Island today. Someday you’ll be “rescued” and you just might miss that place and wish you could go back on that 3 hour tour.
Yesterday, my firstborn baby turned 7! I can’t figure out where 7 years went at all! Well my sweet, girly, all things cool little girl requested a mermaid birthday. We don’t do big parties every year but I always try to make their cake special and in the theme they requested. Now that we’ve reached school age, I also make cupcakes to take to school to match. Of course, my days are all slow and boring with lots of spare time as a mom, so I decided to do something more complex and involved than I usually do. It only took 3 days and a couple really late nights to get it all to come together. Last night, as I was doing up all the dishes from my baking extravaganza, I got to thinking. First off, whoever has to do all the clean up and dishes after all these baking competitions better get paid REAL well. Secondly, I thought of all the work, lack of sleep, frustration, and my aching back and how I had complained about those things. How, as moms, we face things like that everyday. How most days “in the trenches” are long and often at the end we feel we made no difference and accomplished nothing. The house is still dirty. The laundry is still in various stages of needing done all over the house. The dishes are still dirty (I mean seriously, does anyone ever really have a completely empty sink for longer than it takes to snap the picture to prove it was?). Then I thought of the conversation I had with my birthday girl earlier that day. We were on our way home from school where I’d brought her lunch and cupcakes. She was talking about her day and she said “thank you for bringing my cupcakes, Mommy. You always do so much for us. You deserve a break.” I said “I will get one soon” (my Christmas present was a girl’s weekend that is coming up in a month). She said “But I want you to have a break forever”. My response was “Then that would mean I wasn’t your mommy anymore. I don’t want that.” I didn’t think much of that conversation at the time but as I was doing all those dishes and mentally complaining, I was reminded of it. That last statement is so true. For the sleepless nights, dirty dishes, mounds of laundry, toys everywhere, food smears on random surfaces, and all the other things that I often get frustrated with were to go away, it would mean I wouldn’t be a mom. And I don’t want that. I love my kids. They add so much joy and happiness to my life. So momma, when you are feeling down or extra tired or under appreciated, remember this. Those all just mean that you are mom. That you get to watch those precious babies grow. That moment of cuddling where 35 things aren’t getting done is a moment of pure joy for them. That night on the couch is comfort and security for that poor sick kiddo to get the sleep they need. That lost few hours of sleep and aching back is the source of the joy and pride in their voice when they show everyone the picture of their awesome mermaid cake. You are their comfort, refuge, and super hero. You can do anything. You are mom 🙂
I’ve been battling a cold for a week now. I’ve increased my vitamin C and D intake, increased hand washing, used Vicks, taken medicine and tried all the tricks and I still feel horrible. As I was driving the kids to school today, I was thinking about all the things I was doing to fix the problem and to prevent spreading it to others.I started thinking of things I could have done better to prevent it. I don’t drink water (I know, I know, its horrible but I struggle so much with that one), I have vitamin supplements on my nightstand that 50% of the time I fall into bed without taking and probably a million other things that if I actually kept up with I could’ve avoided this cold all together. Then I thought, how often I do this in my spiritual life as well. If I lived daily the way I should, was in the Scripture, hearing from God, praying, and stopping to think before I acted or reacted. How many times could I prevent the pain and hardship? All too often we wait until we are in the midst of something to take action and by then it’s too late. Just like with my cold, the pain and symptoms are already there. Already have to be lived with and dealt with. Some can leave permanent, lasting damage or weaken us to other things. Already can be passed to others around us and make those we love and care about suffer. So today I ask you, are you doing everything you can to prevent those Spiritual colds?
Put on the whole armour of God, that ye may be able to stand against the wiles of the devil.
Ephesians 6:11 KJV
So often the question is asked, “what does it mean to be a special needs mom?”. Honestly, I have no answer. At least not one to answer that question in the way its meant. Yes, my son is unable to walk. Yes, he needs numerous machines, aids, and helps each day. Yes, I am a special needs mom but aren’t all moms? Moms of infants care for special needs. To hold, cuddle, feed, burp, diaper, bathe and wipe the spit up. Moms of toddlers the same. The need to hold when sick or teething. The need to chase every second of every day to keep them safe. The need to have eyes in the back of their heads just to keep them alive. What about moms of teenagers?! Talk about special needs! They need to know they are loved and wanted and accepted yet also learn about hard work and kindness and responsibility and consequences and being a good human. Every mom is a special needs mom, whether its wheelchairs and respiratory illnesses, autism and sensitivities, or diaper blow outs our kids each have special needs. They each have one very special need, Mom. Mommy’s love and attention. As a mom of a child with very specific physical needs I am realizing more and more each day just how many special needs my other children have that I often overlook. So in answer to “what does it mean to be a special needs mom?”, I say this. It means being there. It means standing up for what you know is best for your baby. It means being their biggest cheerleader and pushing them towards needing you less and less (this is a hard one). Its teaching them how to be ok if you aren’t there but letting them know you always will be if they need you. It’s teaching them right and wrong and consequences to every choice we make and that no matter how low they may get there is nowhere God isn’t. It’s being mom. So to ALL MOMS, let me just say, you’ve got this. Love those special needs of each child the Lord has blessed you with 😊