Every now and then I step back and self reflect on why I am writing this blog. I think if I were to isolate the top reasons why the list would look like this, in no particular order:
- To help other medically complex families and those who may share diagnoses and lifestyles.
- To help non-medically complex families understand some of the ups and down many of us will never verbalize.
- To point people towards Christ through the lives of my children and my own struggles as an ill equipped mother.
There are several other reasons and hidden blessings that could be on that list, but each week when I write I try to focus on these. I try to remove all self glorification or exaggeration from them, as our pride often leads us toward those tendencies. And I try to not use it as a weapon, making people in our circles uncomfortable to be around us for fear of what I may write.
And I thoroughly enjoy writing! It allows me to reset my mind and reflect on our successes and failures throughout the week. I am still in awe that you all come back each week to read about the mundane things in our world, but it is evidence to me that God is still at work within it.
This week I want to share a bit with you all about special needs families and the toll it can take on marriages. Let me preface by saying that Jake and I still have hearts that beat in unison and God has given us such strength to preserve our relationship through even the most difficult circumstances we have encountered.
But oh boy, it is difficult!
I honestly can’t remember the last time Jake and I slept in the same bed. With increasing needs and wonky schedules, trying to sleep in the same room just isn’t an option right now. The boys are going to bed between 1:00-2:00am and Jake has to be up by 5:00 for work.
In an effort to get Malachi to sleep longer than 3 hours I sleep next to him and periodically shift his body throughout the night. Levi also sleeps in the room with Malachi and I in his own bed and wakes up screaming for me several times a night. Not to mention the frequent g-tube mishaps that hit throughout the night with each of them.
We are in a season of life where the life sustaining needs of our children outrank some of the aspects of our marriage, which is a little hard to grapple with. We have to be very intentional in making time for each other, and very gracious when our needs aren’t being met. It is a hidden difficulty many people, like myself, didn’t fully understand until we were tossed into it.
I talked a bit about the weird grieving process that can take place when you have to put some of your dreams for your life to death. Yes, there are many dreams that we are able to put “on hold” but some require being put to death in order to not continually fight bitterness. There are dreams that we grieve over for our children, for our marriage, and for ourselves.
Jake and I have been talking about this lately and discussing the things we always envisioned we would do had our life taken a more normal path. These realistic discussions allow us both to share our hearts and look for ways to bless each other.
This week Jake went on an adventure with his friends for his birthday. Yes, it has been exceptionally difficult to manage here alone without him but I also recognize how much both he and I need these opportunities in our lives. And sometimes those sacrifices are the best love language.
We had a group called Men and Women of Action come out this week and start the process of creating an accessible play area for the boys. In our minds we pictured them simply putting a playset together for us (that we purchased with local grant money) and making it Malachi friendly. But they came out and had bigger and better ideas and got right to work!
It is always extremely humbling accepting help from people, and we have had to reach our hands out often in the last 7 years for things that we just can’t physically do on our own. Each time God has sent blessings our way in the form of willing people. This group has blown us away with their work ethic and desire to help our boys experience some normal in their world.
Levi has been so incredibly excited this week, shouting “Playground!” when he wakes up each morning. Both he and Malachi love to watch them work and listen to the noises they generate.
I can’t wait to share photos with you of the finished product. I told Malachi that he could have some friends over for his birthday in a few weeks to play and he started giggling incessantly.
Side note- can you believe that he will be 8 years old in just under three weeks! It blows my mind to think it has been 8 whole years.
The kids and I have been hunkering down and simply surviving! Levi has been having some big outburst in behavior, like biting Malachi and clawing at his face so it has been a challenging week.
And lots and lots of temper tantrums.
Malachi has had a wonderful week as far as seizures go. At the beginning of the week he had a few days full of several large ones, and one very bad night with some massive ones that scared his sweet tender heart. But since Jake has been gone he has had less than 3 a day, which is truly a gift from God.
I have been closely monitoring his oxygen levels as he is still having random moments of discoloration and more shallow breathing. But it is always short lived and his levels come back up relatively quickly with position changes.
Here is a photo of Jake at the same age as Levi!
Both boys are still riding their horses each week and I am shocked at how well they are each doing. It is the highlight of their week and watching them from the sidelines is so special. So much of this world is hands on for me, so being able to enjoy watching them from afar is special.
I have been personally challenged lately at how well I disciple my own children. We talk about God often in our home, but I started really evaluating how intentional my discipleship has been with them.
We read the Bible stories to them, but as a youth leader I see the result of children who are raised with “knowledge” of the Bible and zero ability to apply it to their lives. We aren’t called to simply know the Word of God, we are also required to live it out.
I want my boys to understand what it means to be the hands and feet of Jesus for their time here on earth.
I foolishly (or lazily maybe) assumed that Levi would be too young to retain much of what I say to him, but a few weeks ago I heard him reciting movie lines before they were said on the movie. It was a wake up call to me that if he had memorized portions of Disney movies then surely he could also start memorizing the Word of God and truths about who Jesus is.
We talk a whole lot about Jesus these days. Malachi always beams when we speak about Jesus and I tell Levi it is because Malachi got to spend some time in heaven when he was born. If you don’t know, Malachi’s heart stopped inside of me and they did 15 minutes of CPR on his 1 pound 12 ounce body before he came to life. We have always believed he spent this time in heaven.
Levi is absolutely awestruck by our Jesus talks and several times throughout the day I will catch him saying “Hi” to someone in the room, even though no one is there (creepy this week with Jake gone by the way). I will ask him who he is talking to and he will respond by telling me it is Jesus, or it is angels. Earlier today he was pretending to talk on the phone and when I asked him who was on the other line he said “Jesus” and went back to chatting.
As much as I work to prepare Malachi’s heart for the day he will meet Jesus, I find myself realizing that I need to prepare Levi’s heart for that loss as well. I know it sounds morbid to talk about Malachi’s death, and we have not been given a specific number for life expectancy. But based on many studies and other kids with similar conditions it is safe to assume that we will outlive Malachi.
I want so desperately for both of my children to know and understand what is awaiting them in heaven. And I also want them to know that our time on earth is meant for bringing glory to God.
We have been tackling lots of service projects this week to help them understand walking like Jesus walked. As we are tackling one of those projects I explain to the boys that we are doing this because it was what Jesus would have done, and how Jesus showed His love to others. Levi is like a sponge when he listens, and cheers like a wild man each time we do a “Jesus project”.
Deuteronomy 6:6-9 And these words that I command you today shall be on your heart. You shall teach them diligently to your children, and shall talk of them when you sit in your house, and when you walk by the way, and when you lie down, and when you rise. You shall bind them as a sign on your hand, and they shall be as frontlets between your eyes. You shall write them on the doorposts of your house and on your gates.
This verse has been on my heart for several months, clearly planted there by the Holy Spirit. Discipling our children should be one of our top priorities as Christians. So often people lean on the church to do that job for them, but the Bible is very clear that God conversations should be a norm in the home, not a rarity.
I also understand that those conversations are hard to start having, especially if your children are older and not used to them. So along with this verse pressed on my heart, God also gave me clear directions to put together a devotional book for families. It is very simple so that even a new believer can facilitate one of the devotions. And the conversations are easy enough that a child as young as 6 can participate.
There are 50 pages, and the concept is that you tear out one page a week and tape it on a frequently passed spot in the home. On that page is a question and a memory verse for the week. You have 6 days to think of your answer to the question and attempt to memorize the verse, should you choose to do so. Then on day 7 everyone in the family or group meets and discusses the answer to the question. On the back side is a short Bible study with verses to look up and questions to prompt open discussions.
An example of some of the questions:
What is one thing someone said to you that you will never forget?
What is one adjective that God could say about you that you would be proud to hear?
What earthly thing do you treasure the most and why?
What is something you have had to wait patiently for?
Jake and I have been working on preparing this book for several weeks and it was officially printed this week! Our church will be distributing them throughout the community in an attempt to bring the Word of God into homes, as so many are not able to attend church right now. The responsibility to disciple has been placed back into the hands of parents, and we are finding many feel ill equipped.
If you are local to the Chattanooga, TN area and would like a copy send me a message and we will get it to you. Or if you would like a stack for your church just let us know. They are completely free!
So why bring this up? Through this project I have been reminded that when God calls you to do something He will always open the doors and provide the directions. This project has been no exception as God made this project a fun one instead of an added stress.
I hope that when you feel the prodding of God that you will readily and happily follow His lead. God is simply looking for obedience!
P.S. And another awkward ending to an entry haha. We ended up with one of those nights that I dread, staying up until 5:30 due to some Malachi seizures followed by a tummy ache. I guess I typed the praises from the week a bit too soon! Please pray that today is a decent day.