I am usually all for Faith trying something new. Years ago, though, I drew the line at adaptive skiing. I knew that Dreams in Motion does an annual event at Huff Hills (North Dakota's largest ski area), but I was too afraid to let Faith try it. I just didn't know how she would do being strapped down so tightly, especially with her high tone and issues with her left hip. At her day program, some of her friends had been going for years and Faith thought it sounded like so much fun. So, this year, I decided we should give it a try. Since there are only 20 spots available for this event, I got her registered the morning it opened up. Lots of fresh powder at Huff Hills As the event drew near, I knew I needed to get snow pants for her (since she had none) and make sure I had all the right winter apparel to keep her warm. That was also one of my biggest concerns is her getting too cold, which can cause her tone to increase even more. As the day approached, she was...
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Feeling Worn and Weary?
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Have you ever felt this way?
I know I need to lift my eyes up
But I'm too weak
Life just won't let up
And I know that You can give me rest
So I cry out with all that I have left
My prayers are wearing thin
And I'm worn
Even before the day begins
I'm worn
I've lost my will to fight
I bet there are a lot of special needs parents or parents with very young children who can relate to these words. I know I can. Whenever I hear the song, Worn which contains the above lyrics, I am transported back in time when Faith was a little baby.
I was working full time during the day and trying to look after her at night. She did not sleep well, which meant neither Rob nor I sleep well either. To make things even harder, Rob worked overnights on the weekends.
I was in a major state of sleep deprivation. I started drinking caffeine and eating sugar every day at work to help me stay awake. It didn't help that my thyroid was out of whack. Eventually I was diagnosed with clinical depression and put on an antidepressant. It seemed that every day for years I was exhausted, I was completely worn.
Faith's post-NICU days were filled with sleepless nights that lasted throughout her early school years
I tried my hardest to pray during these difficult times but all I could think to pray for was sleep. Thankfully, our family had a lot of prayer support from friends and family. Through the years, Faith continued having trouble sleeping but it has gotten better. There was a light at the end of the tunnel. Currently, I am off my antidepressants and no longer even drink caffeine. God is good!
So, for all of you special needs moms or moms of young children who are struggling just to get through the day, I would like to offer you encouragement and hope. There is a light at the end of the tunnel for you as well. Just don't be afraid or ashamed to ask others to pray for you and keep trusting that He will bring you through this difficult time.
Some Scriptures for the worn and weary:
Come to Me, all you who labor and are heavy laden, and I will give you rest. Take My yoke upon you and learn from Me, for I am gentle and lowly in heart and you will find rest for your souls. For My yoke is easy and My burden is light. Matthew 11:28-30
When you lie down, you will not be afraid; Yes, you will lie down and your sleep will be sweet. Proverbs 3:24
But those who hope in the LORD will renew their strength. They will soar
on wings like eagles; they will run and not grow weary, they will walk
and not be faint. Isaiah 40:31
By the way, this song was written by the lead singer of Tenth Avenue North, Mike Donehey. He and his wife had two young girls and one night as they lay down in bed, his wife reached over and told him how worn out she was feeling. He knew he needed to write a song called "Worn."
I am usually all for Faith trying something new. Years ago, though, I drew the line at adaptive skiing. I knew that Dreams in Motion does an annual event at Huff Hills (North Dakota's largest ski area), but I was too afraid to let Faith try it. I just didn't know how she would do being strapped down so tightly, especially with her high tone and issues with her left hip. At her day program, some of her friends had been going for years and Faith thought it sounded like so much fun. So, this year, I decided we should give it a try. Since there are only 20 spots available for this event, I got her registered the morning it opened up. Lots of fresh powder at Huff Hills As the event drew near, I knew I needed to get snow pants for her (since she had none) and make sure I had all the right winter apparel to keep her warm. That was also one of my biggest concerns is her getting too cold, which can cause her tone to increase even more. As the day approached, she was...
February started out as it typically does: very cold! This year, my parents and sister braved the weather to have a small get together for my birthday. Faith thought I needed another party like I had last year, but I told her 51 just wasn't as exciting! She also asked if her Auntie Tesa was going to fly up again. Faith really does love a good party! Accurate! Dawn, Faith, and Me Dad practicing holding his arm for after shoulder surgery The next day, my parents took me to IHOP , which had recently opened here in Bismarck, but I hadn't had a chance to go yet. It did not disappoint. My pancakes, eggs, hashbrowns and coffee were all perfect! I was glad to have gotten this meal in with my parents as two days later, my dad would be going through shoulder replacement surgery. We were all expecting him to be in and out on the same day, which is exactly what happened a couple of years ago when he had knee replacement surgery. I, along with my siblings, was shocked t...
We are right in the middle of Congenital Hearts Defect (CHD) Awareness Week, which runs from February 7th through 14th. I am glad to see so many posts on social media to help draw awareness! Many of those posts center around children with CHD, which is good as heart defects are the most common birth defect in the United States. But many people are unaware of how CHD affects adults. Hence, this blog post! In 2010, there were 1.4 million adults in the United States living with congenital heart defects (CHD). Due to increased survival, this number increases by about 5% every year. These numbers are significant considering that at one time babies born with CHD had virtually no chance of becoming an adult. Thanks to surgical advances and research in pediatric cardiology in the past 50 years, most congenital heart defects have been able to be corrected. Today, babies born with heart defects have a much better outlook than they did 50, or even 15 years ago. February 7-14th is CHD Awar...
This past week marked a huge milestone in Faith's life - she has been at her day program for 4 years! I well remember how excited I felt when I found out that in order to qualify for the program, all she needed was to be 18 and have a high school diploma. I know that is not the case in some states. And in many cases, parents choose to have their special needs child in school until they are 21 and then after that they can attend a day program. For Faith though, since I homeschooled her, we were both ready for her to move on to her adult life when she turned 18! Faith at the Science Center with one of her day program staff After a few meetings with her case manager and day program staff, she was ready for her first day. But was I? She was excited when I dropped her off, but as I drove away from the building, I began to cry. Would she really be okay here? Would staff know what to do if she looked uncomfortable or seemed like she was in pain? Faith is verbal, but she canno...
That is a great song. Thank you for sharing this:)
ReplyDeleteThank you.
ReplyDeleteThank you for the encouragement Cari. I am especially weary this week, so it was quite timely! Bless you!
ReplyDeleteYour welcome, ladies. Blessings to you and your families - I'll be praying for each of you this week.
ReplyDelete