Easy was never in the plans for us.
Whether or not I wanted it.
I don’t think you ever think life is “easy.”
until you know what not easy is.
The way things seem easy or not,
is always relative to how they were at best,
or when they were better.
The better times weren’t easy times either.
But they can seem “easy” relatively.
Easy was never in the plans for us.
Persistence, that was.
Patience, that was.
Learning to climb mountains, that was.
Falling, and getting up again, that was.
Coming face to face with anger, pain, and bitterness, that was.
Grief, that sure was.
But thank God.
Because, the most important part of our story is this.
That redemption is, always was, and always will be, the best part of our story.
Not because of anything we can do, but because of Him.
Parents, hear me.
Advocate for your child.
Attend the IEP meetings.
Communicate with your child’s teachers and administration.
Do not assume they are doing what is best for your child.
Speak up, when you feel something is wrong.
Your words are important.
Your feelings are valid.
Your concerns are real.
Hopefully, your child can do this for them self, one day.
But until then, and even then, advocate for your child.
It won’t be easy.
It won’t always get immediate results.
Do it anyway.
Don’t be someone who settles for less than what can be.
Advocate for your child.
In all circumstances.
Don’t let your voice be silenced.
It will echo through the classrooms years from now.
Advocate for your child.
a person who publicly supports or recommends a particular cause or policy.
|synonyms:||champion, upholder, supporter, backer, promoter, protector, patron.|
*I am still sorting out my emotions over several events over the last few days.
More to come soon…
Right now your shoes are pretty tiny. I mean, you are giant for your age, and so they aren’t quite so tiny, like a newborn. But, they are tiny compared to mine. Right now, everything about you is small, because you are five. This means things like your giggles are heartwarming, and your smile is delicious, your laughter is contagious, and your hugs are the best. It also means, when things are hard, I can calm you down. I can pick you up. I can sit you in my lap. I can help you up when you fall.
You fit in my embrace like a mother and child were always meant to fit together.
But, time has a way of continuing on. When we want it to, and when we don’t. One day, your tiny feet are going to be bigger than mine. Our set up of shoes in the front of the house will one day have mine as the smallest, even smaller than both of my little boys’.
I know this happens to everyone, you see. But, when you have a child with special needs, it really makes you think. Will you be able to live on your own one day? Will you be able to have a job? Will you be able to start a family of your own one day? Will you be able to take care of yourself? Will you have sincere friends?
Sometimes I think to myself, God knew I’d always want a special someone to love me, and for me to love and take care of. I have wanted children since before I could even multiply by double digits in school. I think to myself, maybe God gave me this precious gift of having to care for my child longer than most. Or, maybe my child will surpass every one of my concerns, and be totally independent.
No one can predict the future, and most of us know the saying “man plans, God laughs.” Other than practical things like financial planning, and having an extra bedroom in case, I cannot know what Lucas will need as he gets older.
Sometimes I look at the idea of him needing me and my husband forever, and it seems comforting. I will know what he needs, and I will be right there to provide it.
Sometimes, if I am honest, it seems scary.
What if his behaviors are too much to handle, once he is fully grown and possibly over 6 ft tall? What if, God forbid, something happens to me? Who will know Lucas like I do? What if his brother winds up having to sacrifice a lot to take care of Lucas if I am gone? I know these things sound pretty extreme, and maybe you are thinking, why should I think about all that? Unless you have been in my shoes, don’t judge me.
When my thoughts tend to go most berserk, I remind myself, God will be there then. God has already made the way, and I need not worry, but give my worries to the Lord. I know that I don’t have to have all the answers to know that a way will be figured out somehow.
What I can say is this.
To the extent that I have control, I will be there.
I promise you this. I will love you endlessly. I will care for you endlessly. I will support you with all that I can. I will help you when you need it. I will teach you everything you can learn, to do things for yourself. But, when you can’t, and you need me, I promise you, I will be there, even when your shoes have long outgrown mine.
The title picture is the pair of a mom and son shoes next to me and Lucas putting his shoes on after his piano lesson. As we walked out they walked in. And in that moment it really sunk in, what it looks like to special need parent, long into bigger shoe sizes. The blue shoes in the picture belonged to mom, and the black shoes were her son’s. Her child was taller than me and a teenager. She was older than me, and I couldn’t help but think of how it feels to be on this journey that long.
I took the conclusion picture at a concert I went to. It was a Christian concert that I had been so excited to see. In front of me was a mom, and her adult son with special needs. She still had to hold his hand. My eyes filled with tears and I couldn’t help but think of the reality of it all. Her love was something you could feel just by being near her. But so is the tired of the journey. But it is all and always worth it. In God’s strength we press on. Amen.
Today is the day. The day we’ve been counting down since the day we got an epilepsy diagnosis for Lucas. We started counting down sometime around February of 2016, after his brain surgery. We have had to restart our count several times over. Every time he had another seizure. Every time we had to increase his medication, we began our count again.
Hopeful, desperate, often disappointed, but always faithful.
We were counting the number of days that Lucas had been seizure-free. The criteria with our neurologist for weaning Lucas off of his seizure medicine is two years without a seizure and having a normal EEG.
Today is the day.
We have made it to two years. Two years of extra worry. Worry beyond the worries of typical parenting. But we have had so many victories, and so many joys as well.
When you have a child, people say things like your “heart beats and walks around outside of your body now.” In other words, the thing that has stirred up a deeper sense of love than any other human relationship has ever stirred up, is walking around in this world. And that makes us vulnerable.
Your emotions will go up and down with everything that possibly goes on to help or hurt your child. This little heart beating outside of your body depends on you to make the right choices for them. Choices that will result in them having love, protection, shelter, happiness, and health.
When your child has one or more medical diagnoses, the worry, the fear, and the things that you can and cannot control can be drastically intense at times.
The only way it’s possible for me to make it through these ups and downs is to remind myself of these truths.
God is good.
In the storm, He is good.
In the valley, He is good.
In the fearful moments in the middle of the night that keep you awake, He is good.
On the mountaintops, He is good.
In the sweetness of 2 years seizure free, He is good.
And in the unknown ahead, of whether or not we will have to restart our count, as we attempt to wean, He is good.
I will stand on His promises.
It’s how I made it through yesterday, how I face today, and how every tomorrow will be.
So, in my soul, when worry creeps back in, I will stand on His rock, and find rest.
And it is good.
In my fears, when I think all the what ifs, I will rest on His certainty and promise, that He is in better control than I could ever be, in every situation we face.
And it will be good.
And on the days it doesn’t look good, or feel good, I will be real.
I will get on my knees and cry out to Him. I will ask him the whys. I will yell out my frustrations. I will get on my knees. And I will choose to trust,He is still in control of the things I can’t see yet.
Beauty from ashes, is his specialty.
Making masterpieces from blank or messy canvases.
That’s His specialty.
We are His children, pieces of his heart beating outside of His body.
And I will trust that He loves me enough, to see me through all of my days, whether or not they feel good in the moment. He is working it out, through ways I can’t imagine.
I can’t help my kids up from murky ground if I’m not standing on solid ground while I reach my hand out to help them up.
So here we are.
A countdown begins today.
Day one of our leap of faith that we can remove and stay off of seizure medication safely, starts now.
I will cling to my Father’s hand through this journey, and trust that He is in control.
The mothers over there. They stand together, smiling, laughing, exchanging stories. They look up occasionally to scan for their child, and resume talking without much of a second thought about their child playing. They talk about regular things. Kindergarten next year. The play date they might have this weekend.
We stand over here. We stand close to our children. We know they might hurt themselves or someone else, or break a serious rule, or run away, or into the street or parking lot. We know that at a moment’s notice we have to be ready for a meltdown, that you will think you relate to, but you can’t.
The mothers over there. They share their regular lives. They don’t think twice about it. They see us over here, and probably don’t think twice about that either. But I think twice. I think to myself, what will this be like in a few years. When our kids are older, will you still say hi to us? Will your children still want to know and be friends with Lucas? Will they accept him with his differences in interests and personality? Will they listen to his latest obsessive interest? Will they entertain his odd requests for how to play? Will you say hi to me? Will it be out of obligation? Will it be genuine? Will I be able to look away from him long enough to answer and converse? Or will I just wave, smile, and nod, and look back at him?
We stand over here, as the differences between special needs and typical begin to get larger. We stay close as you are able to slowly separate from your children. We know what can happen if we don’t. Siblings begin to trickle out to the yard. Over there, you greet them, and converse. We still can’t take our eyes off our kiddos with extra needs. Our children’s siblings have gotten used to not being able to talk until we are in a safer place.
This is a walk the whole family does together. Together we are strong, but together we are also quite separate. We stand over here, because the differences are going to show their face in one way or another, despite our efforts to unite. My child has many extra needs. My child needs significantly extra supervision. Your child will outgrow this stage. And that will forever separate us. All I wish is that as the differences become more apparent, your efforts to be a part of our life, and to include us, grow at the same rate.
From the day I learned that Lucas was going to need eye surgery, I had been praying. Freshening up on healing scriptures. Renewing my faith in the Lord’s healing power. Reminding myself that there is nothing I walk through that the Lord is going to be with me through.
Lucas has had eye difficulties since he was born. I knew since he was days old that his eyes didn’t quite look right. But, we had been following with pediatric ophthalmologists since he was a bout a year old. They all said the same thing. Wait and see how it looks in six months. Wait. Keep waiting.
His eyes were only looking out of alignment when he was first waking up or very sleepy. The doctors all said it was ok, because his brain is correcting for the problem when he is alert and wide awake. But, little by little, his eyes started to look very out of alignment more and more throughout each day. Especially when we were driving. His eyes couldn’t adjust.
The time was here. Lucas and I had made all the doctor appointments, faced all the daunting waiting and exam rooms that provided endless opportunity for wild behaviors and trying to grab at nearly every eye instrument and machine in the building, while I chased behind trying to anticipate his next attempt, before he got a hold of it. I had read all the surgery paperwork. And this was it.
The waiting was over, and surgery was imminent. That is, it was imminent if we wanted to give our son the best chances to see well, and to prevent his brain from turning off it’s connection to the eye that was causing the most disorganization in his vision. I called my husband immediately after the appointment that confirmed the need for surgery. He was on board. That was confirmation for me, that we needed to fix this. The doctor, my husband, and I all felt the plan should be the same.
And so, here we stood as a family again. We suspected the problem, we endured many doctor’s appointments, opinions and second opinions, finally getting the answer we were searching for. The problem we were seeing was real, and there was a solution. You see, we’ve been here before. Life had prepared us for this, with his brain surgery, with his epilepsy journey, with his autism diagnosis. But it still sets off a pattern of events.
First comes simultaneous shock, fear, and confirmation that we were right about what we were thinking about something being off in Lucas. Then comes gratefulness that we have a specialist who is great and very experienced at doing exactly what he needs done.
Then comes the waiting phase.
The time between diagnosis, plan and surgery.
In this case we had about 3 weeks. Three weeks may not seem like that long, but anticipating a surgery in your child who does not handle change, or things he doesn’t like well, is a long time. Every day there is the concern. The questions in my head. The heart wrenching tug at my heart knowing what he is about to go through and he has no idea it’s coming. The questions in my head: How will he respond? Will he be angry about it when it’s done? Will he be able to communicate his fears, his pain, his symptoms, his feelings? With words? Will I have to guess and interpret his body language? Will I guess right? Will I be able to console him? Will he lose trust in me for bringing him to a place to go through this thing he can’t possibly fully understand?
The answer to these questions became somewhat apparent as he woke up from anesthesia. My husband and I left the chairs they had set up for us in the pre-operation area to move to the recovery room. We went on our usual roller coaster of emotions. It goes from happiness the surgery was over and the surgeon had said it went well, into a sudden surge of frantic adrenaline as Lucas woke up kick and screaming.
The side rail bars represented places he could bash his face in his wild writhing. He thrusted his body so strongly the nurse got smacked in the face while another got kicked in the chest. His face reared angrily out of control left and right and up and crashed back down into the bed, only to repeat the cycle.
Finally we were able to let him try to stand up, and as he tried to open his eyes again, it restarted the cycle of anger and confusion. He tossed himself to the floor. We all blocked dangerous nearby hospital bed corners and equipment from poking him in the eye or from him being able to hit his head on. He eventually lied on his back, and stopped twirling in circles, still for a moment. He yelled with bloody tears steaming down, “I CAN’T SEE!”
With a broken heart, but enough adrenaline to hold me over, and enough experience to know to seize the opportunity, I scooped him up in my arms. If he hadn’t been able to see, then maybe he didn’t know that I was right there with him. Surely, my familiar calming squeeze and hold would let him know it was me there with him. That he was safe in my arms.
I felt his body begin to lose the tension. I squeezed him with the sensory technique needed to overload his body with the input he needed to better regulate. I told him mama’s here. I am holding you. I offered him the choice, “do you want me to keep holding you, or put you down?” The weak little voice came back “keep holding me.”
My husband stood there not knowing what to do. Would it be more helpful for him to say something or do something or not? Nobody knew what to do, but in that moment, Lucas had finally found some semblance of familiar comfort in my arms. From that point on, things went smoother.
We made it home by filling his hands with snacks and a clean gauze he could use to wipe his eyes. When his hands were filled, he was less likely to rub his eyes repeatedly, which of course is not desirable after eye surgery. The doctor had told me that when Lucas rubbed his eyes the first time, it would feel so uncomfortable, that it would be a natural consequence to make him stop. Not Lucas. He has a strong will to get his way. Any time his hands were free, he rubbed his eyes, in hopes he could make them return to the way they used to feel.
I could see his struggle in the rear view mirror as I drove us the over an hour trip back home. It was as if he was convinced that if he could keep rubbing his eyes, then maybe things to go back to the way they were, before surgery. But I could also see Omar, with his tender heart, quick to offer Lucas snacks as needed to distract him from rubbing his eyes.
We were so blessed to have Omar with us, which was a last minute change in plans. I was also blessed to have my husband’s support, even though I didn’t think he was going to make it home in time from work to come with us. Honestly, I thought I was going to be fine by myself. Fortunately, it didn’t work out that way. Eventually, Lucas fell asleep, snacks in hand. Peace for the rest of the drive home.
Back at home, little by little his challenging autistic behaviors increase when he is recovering. His neediness for me increases. He is seeking out comfort, control and confirmation that he is and will be OK. This means my availability for my other son decreases. It means my ability to do anything well is challenged and my struggle with mom guilt and perfectionism peak. It means it takes a lot of energy to not be irritable and on edge trying to manage it all for my family.
However, the goal of the surgery has been clearly unraveling. Lucas’ eyes have become straighter aligned each passing day. He has been happy and active, and I have even been able to sneak in and put his eye ointment in at night as prescribed, without him waking up screaming!
So, I had been praying for sight for weeks. I prayed expectantly. I knew I was asking for more than just the sight in Lucas’ vision. I knew God was going to do even more than that.
Sometimes you have to close your eyes to see.
Sometimes you have to use your heart to see.
Sometimes you have to let go of everything you thought was supposed to happen, in order to see clearly.
Sometimes you have to see past the disappointment.
Sometimes you have to change to see.
Sometimes you have to use your intuition to see the moment that you can pick up your son in your arms to give him the desperate peace he needs, or see the look in your other son’s eyes that says please pay attention to me too.
Sometimes you have to look again to see what you’ve missed.
Sometimes you have to humble yourself to see.
Sometimes things only come into sight through having faith.
I am thanking God that he helped us never lose sight of the most important thing here. Together, we make it through things like this. God knew each person in my family would need each other. He provided for that, way before we even knew how true that even was.
I am so glad that God continues to use our experiences to see more of Him. He continually evolves me and humbles me. In my weakness and confusion and loss of vision, His grace is sufficient to help me see. Staying near him is like being the tree planted by the stream which has a great supply of water, and bears much fruit.
I asked God specifically for “sight” throughout this, because I knew how hard it was going to be to go through it. I knew I was going to need divine “sight” to see the parts of this that would help me grow, and help me find peace. I knew I needed to see God’s glory and revelation in this. And I did.
I will continue to pray. God please realign my sight, towards your ways, when I begin to deviate towards my own. Amen.