Special-needs parenting validated my ability to parent all of my kids

Special-needs parenting validated my ability to parent all of my kids

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!

Children learn from example and teach you to be a leader

Children learn from example and teach you to be a leader

connectI had scheduled for us to go roller skating today, hoping for a good time before my little guy went to the hospital for one more surgery. Everyone was on board up until they skipped on the skates. The hero held on tight to my hands and halfway across the room he said he was done. Seriously? You don’t want to reconsider? Nope, done!

Seriously? You don’t want to reconsider? Nope, done!

For him, he does have reason to be overwhelmed with several people in the room and feeling uneasy. It’s part of him and I know it but man I still felt a little letdown.

And then the 15-year-old didn’t want to do it all – for fear of falling… what? How else will you learn? But neither he or the youngest could be persuaded. Though they have both told me that if they had their own and they could practice somewhere else, they would participate? What? Am I confused? I did manage a few rounds of skating secretly reliving the moments of my childhood – so fun.

But neither he or the youngest could be persuaded. Though they have both told me that if they had their own and they could practice somewhere else, they would participate? What? Am I confused? I did manage a few rounds of skating secretly reliving the moments of my childhood – so fun.

I did manage a few rounds of skating! Yay!

Well, either way, we left. But my disappointment was worn on my sleeve and obvious and I also didn’t want to go home and just sit around. So, what are we to do in a town that offers much for little to nothing?

After some discussion, we decided that we’d get our dogs and go to a nearby park and walk a 2-mile trail. Mind you that we have two 50 lbs. dogs and one itty bitty 6 lbs. Yorkie – we thought the Ty (Yorkie) wouldn’t quite make it but to our surprise, he did incredibly well and seemed to have a really good time.

And then I noticed that the kids really had a good time. Like a much better than at the roller-skating rink – they were laughter and smiles and everyone agreed it was a good walk.

And my heart was at peace again and I realized that my attitude may not have been the best due to my own disappointment but that we were still able to turn it around and have a good time.

And I realized that my kids did agree to learn how to skate and it became a much better day – the kind of day I had hoped for in the first place.

But how exactly does do they learn from you and how does it make you a leader?

You are showing flexibility. It’s one of those things I believe is needed when we want to be good leaders.

Being too rigid, too authoritarian is not helpful if you are trying to set an example.


Just another day in my crazy life and a little inspiration

Just another day in my crazy life and a little inspiration

inspirationI’m in awe of my child and I know it is from him that I draw inspiration. We share the same strength and I like to think we have a similar attitude about life. He’s 10 and I am 39.

Yesterday we set the date for his next surgery (which is this coming Tuesday) and his anxiety is up – as well as it should be. I am trying to maintain calm and while this isn’t like the surgeries before, it still comes with risk, worry, and concern. The challenge is that we know what this surgery will do for him, the surgeons will not know the how until they are in the OR and see the amount of scar tissue (or the lack thereof) that has developed.

I am hopeful that this is hopefully the last “Big” surgery and that we will only encounter minor ones when and if we must. But it does not matter how small or big the surgeries are the fear and worries remain the same.

When the middle one arrived home from school and I shared the plans, he was like “oh ok, cool”. It struck me a bit. It struck me a bit as being too normal – and I realize that every time we endure something medically I leave him behind. It’s been such a challenging road to travel because the healthy ones always get left behind and the mother always bears the guilt – yes me too. But I hope we had enough conversations and what choices are there?

It’s all a bit much for my heart sometimes and I have made plans to unplug this weekend for some fun before Tuesday and the road to recovery, and I think this scares me more. Knowing what we have been through before and how challenging some of the recoveries was, it’s a bit unnerving. Although when he underwent the last transplant – he was doing well in his recovery process and we only had one little setback.

His attitude is unwavering and amazing and I wish more people are infected with his sense of life that he has taught me and many others.

Just another day in my crazy life đŸ™‚


Is this a dream?

Is this a dream?

“Is this a dream?”, the boy asked his mother as they stood in the hallway waiting for the elevator.

“What do you mean by this is a dream?”, his mother asked curiously.

“Is this a dream that I am going home? Can you pinch me? The boy replied

The mother pinched him ever so gently with a slight tear in her eye realizing the impact of this little conversation.

This was the conversation Lennon and I had Wednesday of last week as Lennon was going home. He had minor surgery the day before to fix his gastrocutaneous fistula, in other words, fix the hole in his stomach. And he handled everything like a champ. The waiting in the pre-op lounge was a breeze as he packed himself a bag of his favorite things: his stuffed cat, Ninjago Lego’s, his Ninjago Lego Book and his little Gameboy. He played the entire time, periodically voicing he was hungry. Once we were called we went into the pre-op area, he changed into the gown, laid on the bed and was watching Cartoon Network. He was quite happy about that since we don’t have cable or satellite tv đŸ™‚

He was so calm.

The 40-minute procedure turned into 2 hours – the doctor didn’t anticipate or calculate in the scar tissue he had to battle with. Overall though Lennon did amazingly well. In recovery, we were met with familiar faces (faces we hadn’t seen in two years) and loved catching up on the progress Lennon has made. He was grumpy as he woke up – but nothing like he used to be – only wanted food. We waited to go upstairs into a room for one night for observation and making sure his prograf levels would go wonky.

Lennon enjoyed his time with cable television but the following day he shared this with me:

Mom, I want to go home. I don’t want to be here anymore. I mean I like it here, but I just don’t want to be here anymore. I just don’t want to miss my childhood.

And this is my response: There is an amazing maturity shining through Lennon. Those moments come and go but when they are here – I am in awe with his wisdom of his life.

And then home we went – like it was nothing.. not a dream – it was real.

Kids are good for the soul….

Kids are good for the soul….

…this year I am struggling to get into the spirit of the season…but it takes a child to make your heart smile.. Lennon had made salt dough ornaments that he painted… and well was ready to put them on our tree.. our white little fake tree.. the one thing he was most concerned about is that the star he made last year was on absolutely perfect…while all the other ornaments just about hung off the same branch…

As we are continuing to wait ..4 months and counting… I am amazed at the things Lennon has accomplished.. the relationship I have been able to mend and forge with my other children as he still often takes most of my attention… its a balancing act no doubt…my oldest joined the army and will leave for boot camp in May.. while my 12-year-old his heading into male adolescent years…oi life goes on… even when another child is ill..and just because I struggle with this season doesn’t mean my children should have to struggle to…with that said our tree is up..