One of my greatest struggles through this journey has revolved around the word busy. Not because I am so busy but because of my sinful nature that tries to take control when I hear others talk about being busy. Especially when it relates to being too busy for the things in life that are important. I hear all the time how everyone is busy working, coaching, parenting, socializing, etc. And I get it - I used to have that life too. But I don't anymore - and honestly I thank God for that. My perspective has greatly changed in the last 16 months and Colt has made me such a better person. I have been asked a few times about what I do all day as a stay at home mom. And on a good day I answer with, play with Colt all day and laugh a little as I walk away. But once again I am human. And I do shoulder a lot of stress - as does any normal mother - but mothers that have children with special needs are in a circle of their own. No one can understand their journey - and I thank God for that - but it does sometimes tend to feel like a very long lonely journey. So I am going to provide a little insight into what our daily life is like. Not to receive pity, not to show that I am actually doing something during the day, and not to ask for help. I am only writing this blog for other mothers who are going through similar experiences so they know they are not alone. And for anyone else just to get a little bit of an understanding into why moms and families sometimes have to make the decisions they make and to be supportive and empathetic to their needs.
Before I start, let me assure you that my day is filled with joy, fun, happiness and gratefulness to the Father above. Has this always been the case? Probably not. But every day I am learning on this journey and God is guiding every step. That being said - my days are also filled with anxiety, worrisome thoughts, physical limitations, demanding schedules, and time limitations. These are my personal struggles that I have to battle with every day and pray to God that he helps me take control of. As a mother and wife one of our key duties in life according to the Bible is to maintain peace in our homes (Proverbs 14:1). And this peace is what makes the thriving environments that our precious miracles need and have to have to give them the stepping stones in life they need to fulfill their specific purpose that only they can fill.
Our day begins somewhere between 6-8 am depending on how much (or how little) sleep we got the night before(I will write a blog just on sleeping - or lack there of - one day soon). My husband works 10 hour days and his job is in another county, so he is usually gone for at least 12 hours a day. We have therapy 3-4 times a week, all on different days, and usually at least every 2 weeks we have another appointment, such as a well checkup, etc., scheduled too. We drive to another county twice a week for therapy and to another state for most of his appointments. Last year we drove almost 3900 miles and only began therapy half way through the year. Our drive time takes a huge chunk out of our daily lives. We honestly get very little time as a family of 3 just relaxing and being together. Everyone loves Colt - he's never met a stranger - but this also affects us. We have to be good stewards of our time and the things we choose to do or not do based on his schedule and what is going to benefit him the best each day. To best get my point across I am just going to be very open and vulnerable and share some of the anxious thoughts and efforts (that I have to capture and renew my mind about)(2 Corinthians 10:5,Romans 12:2) that I have or do every. single. day. We don't get a weekend break - therapy, stretching, massaging, etc. must happen every day. Caution! Here is a glimpse into my mind:
What's most important to focus on? Standing, walking, sitting, crawling? Is his body lined up correctly? Fine motor or gross motor? Speech or eating? Should we be using the stander more often? Or should he be walking in his gait trainer more? Does he need more belly time? What about crawling or weight bearing? Should he have his cast on? Do I need to spend more time focusing on his eyes? Should he be wearing his splints for a certain amount of time? Better for him to be barefooted or have his AFOs on? Is he hurting today? Or will today be a good day? Watch for medication side effects and remember seizure protocol - just in case. How do I keep his nap schedule today? Is he getting enough rest? What things should we go do or not do? Is he feeling up to it? Will we hurt someone's feelings? Did I read to him enough? When does he just get to play? Did I feed him enough nutritious food today? Or did we sneak in too much junk? Are they holding him correctly? Or is there a possibility bad habits or patterns are being ingrained in his brain right now? Should I say something? I don't want him to be treated differently. God - have I prayed enough today? Or for the right things? When will there be peace in the middle of the chaos? When do we get to spend time as a family?
And it goes on and on(on top of normal motherly worries). And it's sinful and fearful. Give it to God - we can't do it alone and we were never meant too. He's right beside us the whole way.(Psalm 55:22) Our days are busy enough. But I get to make the choice of whether I am going to focus on anxious thoughts or whether I am going to find the joy in all of the beautiful "busyness" we call life. On this journey I have learned that things really don't have to be on the time crunch our world has set and that we have to slow down and pray for every single decision we make. We may not always make everyone happy with the decisions we make, but as long as we are following God's conviction and doing what's best for our family the rest will fall into place. Our extended family and friends will be supportive and understand that we are doing what we feel is best, so that worry should disappear. Listening to our doctors, therapists, etc. will provide an outlet to eliminate that anxiety by doing the best we can and focusing on the needs our child has. And ultimately believing in the one true healer - Our Heavenly Father.
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