I’m revisiting a blog I wrote awhile back. I needed to remind myself of some things. Sometimes I lose sight of where I fit and wanting to be able to “fix” everything, even when it doesn’t necessarily need to be “fixed”. I feel like sometimes, in my own family, I’m not important or relevant. I’m not sure I will ever feel that way. However, I need to remember, they need me even if they don’t say it. I need to focus on the relevance is there, even when it’s not acknowledged.
Parenting is exhausting. No one ever questions that. You pour yourself into these little beings hoping and praying you are doing everything right for them and watching them grow and change. All the while your heart grows full of love and breaks in their pains and disappointments. You hover somewhere between wanting to let them walk and run and yet want to pad the ground beneath them so if they fall, they won’t be hurt so bad. From heartaches to getting ready to leave the nest; from challenges and obstacles they face; it’s learning how to let them go and grow. That’s every single child.
Parenting a special needs child is exhaustive to the point of no return sometimes. Not only do you pour yourself into them, there is often no respite or relief in sight. People get on you last nerves with the “I don’t know how you do it.” or the “I couldn’t do what you do.” Often we are just too tired to respond. Sometimes we are so frustrated we want to lash out at you, but the needs we are contending with in that moment are too great to take that extra energy to tell you, “If I don’t, who will. I don’t have any other choice but to do it. And yes, if roles were reversed, chances are you would be doing it too.”
First of all, we can’t compare the parenting. Each child, special needs or not, has their own crucibles they will go through that we are trusted with to help them navigate. When our children get older, sometimes they will push back and demand the independence we try to raise them to have. Often when we aren’t quite ready to let them go but we have to let them learn. It is mistakes they will learn from. No matter how hard we try to protect them. We all want our children to come out of childhood and the teenage years as respectful adults. Preferably we hope that they are responsible as well as functioning members of society. That also means being realistic with what our ones with special considerations needs will be for the future.
We are all afraid of what our children’s future holds. We dance on the head of a pin with the stability and focus. We dance on a speck of dust with our knowledge of what the future holds for our kids. Some will end up in residential treatment facilities. Some will stay in our care indefinitely. Some will have moments they will be with us and other moments on their own. And there are those who will be able to integrate into society and function. Even now, we don’t know what Em’s future holds. And it’s scary to not know with high school just around the corner. We cling to hope. We cling to unwavering support. We cling to all the positives while the negatives tug out our hope. When we lose sight of that hope, we come crashing down to earth and just can’t. Earlier this year, I had a scare with Em that brought my world to a standstill. I cried. I just couldn’t. I know of another mom in a very different situation but at that point of having to pick up her shattered world and dreams.
Second. I’m going to hit that statement again. Which statement? That statement of you couldn’t do it or you don’t know how we do it. We hear it so often that more than likely it has become like nails on a chalkboard to us. We hear it all the time. Most of the time we just set our jaws, clench our teeth and just grin a little bit to not scream at you. The truth is we do it because there isn’t an alternative. You would do it too in the same circumstances. Or you would figure it out. Just like we have had to do, you would as well. We sure hope we are doing the right things, but only time will tell.
We also have to contend with people trying to bolster families like ours with the “did you see the story of xyz” and “if you did this instead…” Let me tell you something, each child’s abilities are unique to them. Some will be able to learn to integrate into society at some point but the fear is VERY real that they won’t be able to. And the stress that comes with that worry is more than I can even put into words. It’s vast and unknown. What I am about to tell you, you need to know for people you connect with… It’s not about how much work is put in. It’s not about how much heart we put forth. It’s not about how we interact with our children. While that is part of the equation, there is more to it.
Comparing the two parenting styles goes beyond apples and oranges. It’s more like trying to compare a Carnival to a Three Ring Circus with death defying acrobatics and tricks. We are juggling and keeping up with life at the pace it’s dealt to us, light speed. Which is why when you look at us, some of us have the signs of a zombie. We are functioning and living sometimes with little to no sleep. We live in our journeys, day in, day out 24 hours a day, 7 days a week, 52 weeks a year. Because even if we get a reprieve or respite; our minds never shut off. We are scouring for what our next steps are.
Don’t tell us that we look rough. Please. We know it. Some of us are tag team parenting; others of us are doing the solo act part time to all the time. It doesn’t matter. We are pushing forward. We are fighting for our kids just like you are fighting for your kids. What we need from you…. Quiet understanding. Support. Ask us questions, to gain knowledge and understanding. If you are offering suggestions… know that they may come across as challenging our resolve to help our kids as “not enough” whether that is your intention or not.
Some of us can’t figure out where the next break is coming. We are juggling school, doctor appointments, therapy appointments, extracurricular activities for some (if not all) of our children, work for some of us, medicine rechecks, blood work with help around, meals for the pickiest of eaters and those on special diets, IEPs and the meetings, ensuring everyone is getting sleep, cleaning, cooking, laundry, and anything else you can think of. And we do it all trying to not complain and often with minimal assistance. Sometimes, some of us have families to help or get services to grant us respite. That time goes often to catch up one stuff we may have put off and need to focus on.
We don’t put ourselves in the spotlight. We don’t give ourselves the care we need. Sometimes that happens out of necessity and sometimes it’s just we don’t know how to walk away and let it go. We are in this rodeo on this bucking bronco trying to hold on. We fear if we adjust our grip just a little bit, we are going to fly right off and lose everything we’ve worked so hard to maintain and gain. And at the same time, we are trying to allow some of our children a little more “rein” and “control” while we fret and worry.
So don’t judge us if we look a little run down. Please don’t judge us if you say something to us that you don’t think should set us off. We may snap at you or burst into tears depending on the day. Some of us may seem cold and distant because we have decided we aren’t going to show our emotions and we are thick skinned, but in the privacy of our homes when it’s dark we will break and sob uncontrollably as long as time allows. Ugly cries we often even hide from those we love. Others of us will take that moment to educate you or break right then and there as we have held ourselves together too long and it’s the icing on the cake.
We are human. We aren’t Super Mom or Super Dad. We try to be. Even though maybe we just need to lean that it’s ok to just be the best mom and dad we can be. The reality is we are all trying our best and that’s all anyone can ask or expect of us. You would be too if the cards were dealt differently. We all are in this parenting thing together. We are all going to make mistakes and be stronger than we think we are. And that is what makes us all unique. We all have kids. We all think they are special. And we would move heaven and earth to make life amazing for them. And someday, hopefully, our kids will ALL look back and not only see that but tell us we did well.