Douglas shares how when Micah was born there were tough times, it was touch and go at the start. He talks about what we wants for Micah at school, how the school system is like a brick wall so often.

It’s been amazing and insightful… let’s carry on in 2023.

Frankie and I have a few things in common. One of these is it took him 11 years to realize he needed to take care of himself mentally and physically. Like so many of us dads, we are so in the zone of being the caregiver/caretaker of our special needs children, that we can’t even see what damage we do to ourselves. Frankie recently arrived at the acceptance phase of Nico’s diagnosis of Dravet Syndrome (it is a form of epilepsy). And it was right around then that I reached out to him as you hear him talk about how, everything happens for a reason. Frankie calls his world ‘the unfortunate privilege’ which does resonate for me too. While him and his wife suffer PTSD because they are constantly on high alert for seizures it’s hard to imagine how they make it out the door sometimes. I spoke with Frankie for over 2.5hrs in total, what you do hear is how vital the gym is that he has set up. With Tool blasting out the garage door, he channels his deep trauma and makes himself feel better mentally and physically, because Nico is not getting any smaller. That’s how he takes care of himself, and he reminds me of when you fly, they ask you (as an adult) to put on your oxygen mask first, then your kids one…. Listen for this, it’s something which will stay with me for ever. Finally he tells a story of taking Nico to play baseball with a group of children who also have special needs/disabilities. He tells the story and without ruining it by telling the story here in the description, it had me in tears and of course him, it was one of the most memorable achievements for him. Thank you Frankie for being real and open and honest, it’s refreshing and important for me and others to hear.

About 6 months ago they got Jacks diagnosis, and all the mile stone talk prior to that, well just went out the window and this made things tough and tricky for Mike. After I reached out to him, he heard me talk about the poem ‘Welcome to Holland’ which has allowed him to see where they are and give some perspective of mental processing of it all. Faith has been a big part of Mikes life and he’s honest about his battle which continues to challenge him. He’s honest about what it means to him and how he feels like he was let down by the big man. The diagnosis was received over the phone while he was at work giving a sales presentation.. needless to say he left work right way and cried on the way home in the car. That night they spoke to a family in Canada who have a boy with the same disease, that conversation gave them the faith and ability to look forward for a cure which has just started being trialed. They have started fundraising not just for Jack, but for 10 children who have SPG50. The target is $2,500,000 the links are here and they are serious! https://linktr.ee/jackscornerfoundation I take my hat off to Mike because as he tells me, every memory of Jack (videos especially) as he grown older, year on year, it’s hard to enjoy sometimes because he sees the effect of the ultra rare disease which slowly takes basic abilities away. Again, it’s real, it’s life, it’s how it is. https://rarediseases.org/rare-diseases/spastic-paraplegia-50/

I met Joe over 20 years ago in London and he remained a true friend and mate over the years, and to hear him talk about challenges he faced and still faces as dad to 7 children by 4 women, it definitely comes with regrets, reflection and ownership of what has happened. We get into a talk about ‘the bubble’ we find ourselves in, it’s a new analogy which I have used which is fun to think about. He goes into his childhood and how his dad was 50 and his mum was 20 when he was born and how he has very vivid memories of how his dad told his mum ‘deal with the kids before I do’ and to him back then he didn’t understand. He does now. Then we get into Elijah, one of the 7 lovely kids Joe is father to is Autistic. Joe tells us of how he was too hard on him, sometimes not giving him enough time to do things. Joe does regret this openly and you will hear his love him and his other kids comes from his heart. We talk about what we want to be as a dad and to be better as a dad. This is a real talk, real expressions of love, fear and importantly we both feel we can be vulnerable and open. Elijah has a YouTube channel- https://youtube.com/@stixter826

FULL EPISODE-Adam joins me to tell me about his journey becoming a dad to his child with extra needs.

I heard Adam on the podcast ‘Once upon a gene’ https://open.spotify.com/episode/2WlydzeiQRVsusEuJxYOu2?si=Vw1MN61gQc-1PDGDhCPMYg and I decided I would like to talk with him about his ‘dad story’.

Adam and I start chatting away about life in general, and a few real world challenges like trying to be the dad/caregiver for both kids, one who needs more attention than the other. It’s almost like he’s interviewing me, and we both laugh and agree it’s like free therapy for us and hopefully anyone who listens.

He tells us about how Daisy was the first child and has been a real rock to the family, and at 7 she has learnt so much empathy for her siblings along the way.

Adam and his wife are so dedicated to the kids and when Lola arrived on the scene things got a little more complicated. Three months after she was born she has her first seizure which from that point resulted in so many trips to the hospital but not really getting answers which must have been so frustrating.

Adam tells me how he was (and still is) is almost in robot mode and just trying to be ready for anything which happens to Alfie.

One of the most traumatic experiences he and his wife face is about half way into our talk.

This is best described by him, and as you listen you might want to have something to dry your eyes.

It’s very real and so sad to hear, but it is what happens to him and the family.

With the loss of Lola 4 days after Alfie was born, it’s so hard to imagine how they made it through.

This is just devastating for me and I am lost for words as you will see and hear, even though I knew some of the story already.

Still with many unknowns about Lola’s condition which she had and then the arrival of Alfie, Adam still kept going as dad.

How does he and his wife do it?? There is only one way and that’s just try to deal with it the best you they can and be present.

3 months after Alfie was born he then has his first seizure which replicates in time Lola’s.

Adam lets us into a few secrets of how he manages to cope. Getting out once a week and playing footie (soccer) really gives him space to be mentally grounded. It’s so important for him and for those around him.

Finally, we talk about music and what songs he likes to listen to and what they represent… here they are. Rusted Root- On my way https://youtu.be/_hiAiKocwpU which was played at the remembrance for Lola and Adam plays it when he feels a little down to bring him back up.

https://youtu.be/uJ_1HMAGb4kVance Joy- Riptide, is the next and this gets blasted out by his wife and Daisy. I can see it now..

Also what is SO important is the website which Adam has created to bring awareness to Creld1 Warriors - Alone We Are Rare, Together We Are Strong

Check those songs and more from the other dads on the Spotify playlist here https://open.spotify.com/playlist/7aJWmiz39MKFXhfBHc7HW8?si=1M4vUrgAQXG8fwUGuu5HDw

Part 2 of 2 is when Adam talks about one of the most challenging and monumental moments in his and his family’s lives, the loss of Lola 4 days after Alfie was born. He tells us how he got through and how they continue to talk and celebrate Lola’s life. It is very much part of the grieving process that’s for sure. I give him so much credit for how he has is still is dealing with what life has thrown at him. ….Adam lets us into a few secrets of how he manages to cope. Getting out once a week and playing footie (soccer) really gives him space to be mentally grounded. It’s so important for him and for those around him.

Finally, we talk about music and what songs he likes to listen to and what they represent… here they are. Rusted Root- On my way https://youtu.be/_hiAiKocwpU which was played at the remembrance for Lola and Adam plays it when he feels a little down to bring him back up.

https://youtu.be/uJ_1HMAGb4kVance Joy- Riptide, is the next and this gets blasted out by his wife and Daisy. I can see it now..

Also what is SO important is the website which Adam has created to bring awareness to Creld1 Warriors - Alone We Are Rare, Together We Are Strong

Check those songs and more from the other dads on the Spotify playlist here https://open.spotify.com/playlist/7aJWmiz39MKFXhfBHc7HW8?si=1M4vUrgAQXG8fwUGuu5HDw

(This is part 1 of a 2 part episode) Adam talks about his road to being a dad with his first- Daisy who just turned 7, then they had Lola. That’s where life took many many turns-He talks about how after so many hospital visits with Lola due to her seizures they were able to manage things at home with medication, and avoiding ambulance rides at one point about 15 times over 3 months. He gives an insight to how tough it was for him personally but he never forgets how hard it was for his lovely wife who worked at the hospitals they repeatedly visited while she gave the down low on how some doctors and nurses were. Balancing life, work and being dad and a caregiver is a real world challenge and you will hear this right here! *****Part 2 is out next week and it really is so important to hear.

Carl and his wife adopted 2 Down syndrome kids a few years ago. Both are just under 10 now. It’s been a real ride and it’s only just getting started. He talks about his frustrations in how he can’t really do much when the kids come back with bruises here and there. With kids who are non verbal, we feel we should or need to do more in this situation. Sometimes we just can’t. He really likes and loves his two kids which challenge him every single day to navigate though the ‘sit down tantrums’ in the middle of the road. I ask him what’s his biggest fear… it’s a tough one to answer but we flip it and look from the other side. It’s a big one… he wants the kids to be liked. The expectation of what a dad is keeps us talking and it’s tough pinpoint what it is really.. Carl really starts to open up, it’s so important, and I respect Carl for doing so. His favorite song is- https://youtu.be/Y88LVU7MAe4 What’s up Danger from Spider man. It’s on the Spotify playlist here- https://open.spotify.com/playlist/7aJWmiz39MKFXhfBHc7HW8?si=DNn-ozbOT5ems_HEgodJJw

Tommy comes back for a catch up and we talk about life and it’s ups and downs.