As I take a look at everyone's children in their perfectly posed first and last day of school pictures, that show only their physical growth, I know that each child has grown in so many ways that can't be seen with the eyes. Each child has learned new things in their own way and hopefully grown in spirit, becoming one year closer to the person God sees them becoming as an adult. My own child's schedule works differently than most, and he will attend summer school. His growth appears way differently than most children too. Lately I have had to remind myself to look for it, and not let it be lost in what has not yet come to be. As I try to snap pictures of my own moving 12 year old, who does not pose for photos, as he gets off the bus on the last day before his week long break, I think it's time to share the part of his story that came to light for me recently. It's a piece that nobody knows about and some of it I will not be proud to tell, but in the end, it's a signal of hope for the future. And if I can inspire another parent like me to know that it is never too late and we should never give up no matter how many times we have to start over, then the story needs shared. I say this knowing that not many will click on this little blog and read it. But I have been prompted by the Holy Spirit to share my thoughts when I can, and the ones that He gives to me, because there has to be one other person who needs them. It makes it worth the effort.
(Note: even if you don't believe in God, if you are a special needs parent I hope you keep reading what I learned. I just can't leave God out of our story because He has been the biggest part of it.)
Speaking of the Holy Spirit, I remember hearing from Him clearly when Lucas was a baby.
It was months after my joy had been so complete in finally becoming a mom. It was what I had wanted to be most. And it took a while. I had a heartbreaking loss of a pregnancy first. So when my baby boy was born healthy, I experienced the happiest day of my life. Albeit the most painful. Until the day when I realized my baby was not a typically developing baby. When there was no denying that he wasn't going to be doing things in life the way I envisioned when I first held him or even felt him moving in me and didn't know if he was a boy or girl. You know, I just thought he would be like most kids. And it hurt to see that he wasn't. So as we started the long diagnostic process we took him forward in the little church we attended then during a healing service, where people were invited to come forward, have the pastor and others in the church lay their hands on you and pray for healing, as the Bible tells us to do. I wanted a miracle for my son. I wanted the kind of miracle where Jesus spoke and things instantly happened. He spoke and gave sight and made lame people walk and freed them from demon possession and even raised them from the dead. Right away. And I know that those miracles still happen today when we pray in His name. But God spoke to my heart that day, even as we were in the middle of our prayer for Lucas, and He told me that was not the type of miracle I was going to get. Although I have had my days when I still struggle to see it, the miracle God promised we WOULD receive was better. He said to me that day in front of the alter that Lucas would do well in his life and succeed, but it wasn't going to happen instantly like I asked. God said I would have to put in the work, because it was in the work that God would be glorified. I felt peace about it in that moment and I accepted God's answer. And from that day forward Lucas got everything he ever needed to help him do his best. We have certainly seen small miracles happen every day.
But here comes the part I hate to admit. The last two years have been different. And I have come to realize that my attitude had changed and I had stopped believing for the best. It started as my son approached his tenth birthday. I became depressed as we entered the double digits years, because I didn't think that after 10 years of doing the work that my child would still have so much more work to get through in order to become even semi independent. I didn't think there would still be so many dirty pull ups at this age, or messes that you would expect out of a 2 year old, but not a 10 year old. I didn't think he would still have so little to say. I didn't think he would still be lashing out physically after so many years of therapy. And I went to the dark place of wondering what good it all had done if this is still where we were. Also, my mother was getting more unwell by the day. Her body and brain failed her and I had to help out a lot and spend days with her so my dad could have respite. We did the best we could for her but it was horribly sad to watch what took place with her. So I was just trying to survive the days at the time. Also, I had experienced extreme emotions over not having a second child in our family. We never wanted Lucas to be alone. We always thought he would get a sibling through adoption, and then God revealed a different plan, one that had involved having another baby of our own, despite the fear of Fragile X, the disorder Lucas had that had affected him so profoundly and caused him to have autism, among several other issues. Well in following that call for a second baby when my son was already 10 years old, I had another miscarriage, this one worse than the first, because I had been pregnant for a whole trimester and the event landed me in the hospital over night. After the procedure to stop the extreme bleeding, I was released late the next day while my son was still in school. I wanted nothing more than to hide from the world. Consumed by the pain of what happened, I returned home to my dad asking me immediately to sit with my mom the next morning. The mom who I would have loved to cry with but who had no idea about what was happening. I had to keep pressing. I had no choice. So I left my son's progress for the moment in the hands of his therapists and teachers. Because being his therapist while caring for an ill parent and trying to process my hurt was more than I could do. Two weeks after my Lucas's 10th birthday, my mom, his Grammy, passed away. And as with any major change, he had a hard time with that. But his very limited verbalization left us unable to tell how much he understood or exactly what he felt. This is everything that happened in October of 2016. Two days after Christmas, I found out I was pregnant again and we announced it months later when everything with this pregnancy was deemed normal by my medical team.
As we shared it at the time, our superhero was finally getting his sidekick. We were over the moon and of course delighted when little brother Liam was born, during a much less traumatic birth, thanks to the epidural I had this time.
As I write this today, Liam is 21 months old. He adores his older brother just as we hoped. We know he is going to be his friend for life. What a blessing he has been to our family! But also, what a life changer. Wow, I didn't know just how difficult it was going to be for me to care for both these people every day. We went from nursing around the clock to complete mobility and shenanigans so quickly. Both things kept me very busy with the new addition to our family. And as I mentioned, when life is changing, Lucas's behavior changes too. And Lucas continued to need all that he needs. Not to mention that he is in that preteen and prepubescent stage. When you see the major life events that have occurred over the last two years in writing, it seems no wonder why we would be in a place that we feel like he has been stuck concerning his improved development. But that hasn't made it any less emotional. God has still revealed to me that in my moments of crying out to Him through hot tears of anger, saying things about how He promised that Lucas would be okay and what we see now is NOT okay, I had simply gotten my vision and perspective distorted.
In these years that seemed stagnant for positive change in his abilities, God showed me that I was speaking way too much negativity over our situations. I spoke badly about what was going on and to and about my son. I yelled at him for bad behavior instead of remembering that he doesn't have it in him to do things just for the purpose of being mean or spiteful. He is only ever trying to defend himself against what bothers him or what he doesn't want to be forced to do. And if you don't think the way we speak about our lives matters, check out my upcoming post, one about the tale of two apples. You will get the visual on how much words make an impact. But there was a little more revelation that came to me recently, about why I had the "I give up" attitude just because my son has so much more to learn, and because we lost his home therapy, and because his medical and teaching staff seemed to be all out of new ideas on how to move him forward.
"Hope deferred makes the heart sick, but a longing fulfilled is a tree of life." Proverbs 13:12
When I read this verse I was hit with the reality that my hope for Lucas had been deferred time and time again. And it only seemed to get worse when we lost so much of our help and those who were still on board could not seem to help us. God showed me more. When I had gotten sick over the last year, another major life event, and I felt helpless because nobody was giving me any good advice, God revealed to me that I only needed him and the brain he gave me to do the research I needed for myself. I was my own help. And in this season, I could be my son's help too. As hard as it feels, if I abide in Jesus, I have all I need to find out what will help Lucas and carry it out. He showed me that in our state of survival mode through family illness and sleepless weeks with a new born and treading water with my kids to keep from drowning, I had abandoned the actual work for Lucas before the work was finished. Remember that is the part God said I must do in order for the promise of my son's full potential to be brought to completion. God is glorified in the work that He does in us and through us and we can't grow tired of doing good, as scripture says. Our reward is yet to be reaped. Hope may have been deferred but in Christ there is always still hope. Our tree of life is coming. The past and the present do not determine my son's future. I have seemed to stumble upon new information about how we can get him some more momentum accidentally, but I know there are no coincidences in the order of things. I have a feeling that some day, on his actual last day of school, when he will have grown into a man, I will have a photo of a guy who has achieved more than we even dreamed possible. God is cool like that. I am looking forward to our longing fulfilled. But first, the work.
