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!
When I first became a mom I thought about the conversation I would have with my kid. I dreamt about telling some of the crazy stories from my own childhood minus a part here and there.
I dreamt of happy and healthy children, who would have amazing careers and create their own little families. What I didn’t envision is that one of my kids would be ill and that he would eventually be able to tell his own amazing yet scary almost unbelievable story of going undiagnosed for 4 years and three transplants later.
And yet in all those 22 years of parenting and 11 years of being a special needs kind of mom, I never thought I would have the conversation about taking too much medicine and what it could do.
Yes, of course, I have at one time or another explained that too much Tylenol isn’t good for you. Or that one could alternate between Tylenol or ibuprofen in order to feel better.
Tonight I was reminded just how different parenting Lennon is compared to his older siblings. His oldest brother who recently completed his time in the Army and joined the life of civilians or his other older brother, who is you know just a typical teenager.
Lennon: Mom what will happen if I take all these meds?
Me: You will probably either be really sick or not wake up – ever
Lennon: Really? Would I be missing school?
Me: You would miss school and so much more. You could die – and a lot of people would be incredibly sad about it.
Lennon requires a lot of explaining. The kind of explaining that you are not sure if it will make sense or even be real to him. Lennon’s short-term memory was damaged during the ages of urea cycle disorder and so repetition is necessary and the key too much of his learning. It’s hard to figure out how much of a repetition he needs until it sticks and so I foresee that tonight’s conversation will not be the last one.
This week, next month, next year or even several years, for now, I will talk with him again of what could happen if he overdoses on *any* of his 10 medications – and what that may look like.
Tonight I hugged him tightly and called him my sunshine .. and he broke out in a song “I’m walking on sunshine”
So soon he has forgotten the conversation that tugged at my heartstrings.
Sweet Dreams my boy – see you in the morning.
Summer Camp has been an amazing experience from a mother’s point a view – from a counselors point of view and well from Lennon’s point of view. He has inspired me every day pushing through his fears.
As it stands with all things there are also some challenges and I see his social delays – so significantly by 2 years. Now it does not face him one-bit mind you – he is who he is and he’s so totally cool with that (me too by the way).
And yet I can’t help see that he is unable to connect with kids his age, that he has meltdowns because his feelings got hurt and he can’t manage them, or lunch is not looking good at all. When kids are asking about his scars he’s a little stuck in how to respond. Those are all areas I need to work with him on 🙂 but …
….those minor moments of struggle where my heart aches when he is not equipped to handle the social situation in which one peer is either being bossy or tells him to stop following him. He genuinely likes people and when he connects with someone and seriously likes them, he wants to you know to be their friend.
In Lennon’s world, friends don’t hurt each other’s feelings. And I get it, I so totally get it. However, the real world is quite different and not everyone can handle being friendly all the time – and so he shuts down and struggles to join others in the fun. Instead, he sits and pouts and I have to pull out all the punches to even get a smirk.
But this has been by far the best experience for him socially – yes he receives social interaction in school but there he has to be seated, gets pulled out for academics and only has 15 minutes of recess. At camp, he’s pretty much forced to be around peers from 8:00 till 3ish and he must interact with them through reading, crafts, park time, swimming, bounce & play and more. I see the good stuff 🙂