You are never quite prepared for the unthinkable.
You get pregnant, like the few times before, and you don’t thnk about the possibility that something isn’t quite right. Your other children are healthy, developing normally and causing you to throw your hands in the air with frustration.
This was me back in 2002 when I found out I was pregnant with what would be my last child.
When my son received his diagnosis of urea cycle disorder at the age of 4, I couldn’t have imagined the years that followed. It’s like that bad dream you wish you’d never have. But it wasn’t a dream, living in medical crisis 24-hours a day. Always being on alert of another hyper-ammonia episode, always trying to ensure that anything that could stress him, is really prevented.
But we couldn’t remove or control the genetic disorder, no matter how hard we tried. Time moved on and we found ourselves traveling 45 minutes to the hospital first once a month, then once a week and then 2-3 times a week.
Always measuring his meds, his protein and wondering how we could improve the situation and avoid another hospitalization.
But no matter what we did, we couldn’t get it under control.
8 years ago we were faced with a really hard decision of moving forward with organ donation. In order for my son to survive, he needed a liver. And we made the only decision we could do, that felt right and go through with the plan of my son getting a new liver.
A new liver meant a chance at a life.
It’s been 5.5 years since his last (third) liver transplant.
And until this year, I was able to avoid having these conversations with him. Avoid them because I wasn’t sure what to say. How to explain that I watched him not breathe when he came off the ventilator. How to explain that he lost so much blood during his last transplant that his blood pressure dropped to the point of almost no return.
But I believe in truth and I believe he deserves to know everything that he can’t remember due to his medical induced coma and age.
He’s coming to the age of development where he wants to know things, all the things, including his own journey.
You know these conversations are coming, but you are never truly prepared. Like the moment you tell him he almost didn’t make it and you watch him take it all in.
“Hmm, scary”, he responded.
And with tears in my eyes, all I can think “Yes, kiddo. It sure as hell was.”
But it won’t stop here. He will continue to process the information, continue to ask questions until he can formulate a clear picture in his own head.
And I want him to know the reality of how lucky he is – we are – that he get’s to be here with us today.
When I became a parent at 17, I totally knew the kind of parent I didn’t want to be and I had created this idea of what my style of parenting would look like. I have always doubted my abilities to parent well because I felt I didn’t have adequate role moles in foster care. However, being a foster kid prepared me to be the kind of parent that I am today.
My confidence in parenting and loving my children was shattered because, at the tender age of 19, I gave up my rights to my second born. He has been raised by his father and his mother and deep down it was the best decision for him and they have done a fabulous job.
By the time my third son was born, I knew I had to change my parenting style. I wasn’t exactly a helicopter mom but I was rigid enough that neither my children or I could relax. I eased my way into it with cuddle in front of the television watching dinosaurs sing about friendship and family – and no I am not talking the purple kind.
When my youngest son was born, life was organized chaos but his early years left me even more exhausted and questioning my ability as a parent. Deep down in my gut, in the core of my intuition, I knew that something wasn’t quite right. And sure enough a few years later, he would be diagnosed with a rare genetic disorder. This rocked our worlds but also taught me that parenting is led by our intuition. We know right from wrong and how to abide the laws.
Parenting was so much more for me. It was genuinely connecting with my children and creating that bond that I never experienced. When my eldest graduated boot camp, he told me he didn’t miss me because it was like he never left. I was quite strict in my expectations of a clean room and a clean house and never disrespect me. I always wondered what our relationship would be like when he is older and no we don’t talk every day, but when we do talk, it’s an open and honest discussion.
When my teenager and I go to concerts we, both can appreciate the music and just being in the same space together. Life as a teenager isn’t easy and the expectations of boundaries are being pushed but I know that putting my foot down or being compassionate will be just what is needed at that moment in time.
As quality became apparent during my journey as a parent of a special needs child, my confidence grew stronger albeit my faith continues to be tested. But every now and again, I get his nugget of confirmation where I can acknowledge that the job was well done.
So, what is my message here?
Intuition is one of the greatest abilities one can possess and if we allow it can guide your life to one that feels authentic and happy, for lack of a better word. If it doesn’t feel good in your gut or in your bones, well don’t do it. Question it and talk about it, if you can. Be open and flexible to the different point of views but don’t be afraid to stand your ground when your intuition tells you too!
As a mom of a special needs child, I know that parenting is more challenging than perhaps my adolescent – and maybe they are equally hard each bringing forth their own different challenges.
One of my hopes and goals is that I can teach my son responsibility in a way that I know he can then take care of his basic things. He struggles with organization i.e. putting his homework in the folder rather than just the backpack.
Recently during our morning routine, I had asked him to put his hearing aid in, as we were ready to walk out the door and he exclaimed that it is not in the container.
What do you mean?
It was simple, he took it out and couldn’t remember where he took it out at. It could be lost in the yard or somewhere in his room.
I was frustrated, to say the least, not enough coffee for my calm to hit my nerves. I was upset and I let it be heard and perhaps not the best parenting I have done in a while… why?
Because I cannot expect my 11-year-old son with cognitive deficits and organizational challenges are solely responsible for his hearing aid …as much as he should be able to due to his chronological age. It is just not realistic for him and I do think that he can completely handle this responsibility without support.
So, what do you do?
You have a conversation and come up with a new plan – a plan that is asking you to be more vigilant about his hearing aid. He only uses it for school so the appropriate measure is to prompt him to put it away if it’s still in his ear by the time I pick him up to go home.
I can place visual cues in my car as reminders for him. He likes to do things for himself, as well as he should and it is my job to help him get there – preferably without losing my cool of course.
I have little reminders to me letting me know that how I speak to him will ultimately be the way he will talk to himself – and this takes patience with me and more so perhaps with him – of course, this should be used with all children but I note that my kiddo sometimes struggles and wishes he didn’t exist to make his pain go away … because in that moment in time that IS the ONLY way he can express his hurt inside.
This is two days’ past, and I have processed my emotions, talked with him and together we have searched high and low for his hearing aid. Perhaps it is time for a new one because well, we have made it for more than a year and that… well, that is darn good.
So, no matter how frustrating some moments can be, try to find the teaching moment of value and well find a positive in the situation – and then figure out a better way to teach responsibility!
Out of all the work and jobs, I have done, parenting is by far the toughest I have encountered. You hope and pray that you are doing a great job raising well-rounded children – but the *something* happens and you are questioning your parenting skills repeatedly.
When my eldest was still in high school, I thought he would NEVER graduate. Getting him to school wasn’t a problem, but staying in class, was a whole different topic. But alas, he did graduate – whew. And then he lived on my couch for a bit before I said no more, get up and get a job – and he did. But then he totaled my car but soon he was enlisted in the Army, serving his country. And four years later I am in awe – because he continues to stand for what he believes in and live the life he envisions with his wife – how they want to. I learned that I don’t always agree with him, BUT from the looks of it, I’ve done my job well.
I am now again a mom of a teenager of a different kind, the kind that goes to school but struggles to fit in and have friends. The kind that is sensitive and honors the “I am there for you no matter what” system – even if in the end, it means he is getting hurt. And yet, no matter the color of his hair or the ability to play bass guitar, he feels like he doesn’t fit in – and I could tell him that he was meant to stand out but it wouldn’t do any good.
Here he is in the prime of adolescent years, yelling for help on Facebook – waiting for me to reach out to him – when all the while I tell him, I will find someone for him to talk to and he can’t say it. And then my phone rang with the guidance counselor on the other line – my cool sweet sensitive adolescent has reached the point of where he just needed help to reach me.
Parenting is hard. You see the signs of adolescent years and you chalk it up to typical adolescent drama but your kid is screaming it’s something different entirely. My son will be getting help because he asked for it. It doesn’t reflect on my parenting, but it shows there is something more than I as his mother may not be able to handle OR my son doesn’t really want me to worry and “burden” me because that IS the kind of person he is.
He once told me that no one worries about him but that he worries about everyone one else.
Music is his release and I am grateful for that – and yet at the same time the greatest musicians have lost their lives too soon – and I become a bit worried.
I try hard to talk to my kids about their day and their struggles and yet kids don’t always want to reach out to their parents – not because of bad parenting – but because the kids want to protect the parents of the demons that hide inside of them.
I am sad that my son struggles so much but at the same time, I am incredibly grateful that he is showing the strength of wanting to get help.
Here are some signs of indicating that there is a possibility of depression and professional help is needed:
- Sadness or hopelessness
- Irritability, anger, or hostility
- Tearfulness or frequent crying
- Withdrawal from friends and family
- Loss of interest in activities
- Changes in eating and sleeping habits
- Restlessness and agitation
- Feelings of worthlessness and guilt
- Lack of enthusiasm and motivation
- Fatigue or lack of energy
- Difficulty concentrating
- Thoughts of death or suicide
If you observe these or other symptoms, call the pediatrician or a counselor to help you sort it out. There is nothing wrong with seeking help if anything is and will be the best thing you can do for your teen!
Some days are really challenging or maybe most days are challenging, but it’s more manageable. And then, of course, there are days that really get the best of me.
It’s a gentle reminder of being human!
When working in a high energy requiring profession, coupled with special needs parenting – well talk about an emotional overwhelm.
I mean I can’t always have it all together – though I mostly wish I could.
Yet working in a demanding field and coming home where your kid (special needs or not) continues to put demands on your – where is the time for yourself?
It is right out hard just finding a moment to yourself and balance single parenting, work and yourself during it all. I didn’t run tonight, which is my usual self-care go-to activity to relieve stress and get myself together. 30 minutes of me and my music hitting the pavement – and I didn’t. I couldn’t.
I am tired.
And so, I sat. I sat in my chair, watching one of my favorite shows and did nothing. Until the moment, I felt I needed to write down my experience. Because frankly, parenting is hard. Working with people for some of us is also quite challenging even though we LOVE what we do. Or maybe your job crunching numbers and beating the deadlines of data entry is hard – I get it. All jobs can be hard. And then you are asked to give some more because you are nonetheless a parent.
Dinner needs to be made, bath to be given and cuddles to be had.
You will have a few minutes of solitude after the kiddo heads to bed – take a bath, read a book or journal. Do something to find some inner calm and balance within yourself.
Oh, and doing nothing, of course, is acceptable if it does its job!
Because tomorrow is another day and you will do it all over again.
So please, take care of you so you can!