It seems like yesterday, Mathis, the first time I held you in my arms, the 2 days of the perfect dream after your birth: a family with 2 kids, a boy and a girl. It also seems like yesterday, the moment of disbelief, when the paediatrician told me that she wanted to take you for blood tests, to “exclude her assumption of Downsyndrome” – I will never forget those exact words, they were probably her way to gently prepare me for the diagnosis. There I was, all alone in the hospital room, your daddy was bringing your sister to a birthday party, you were gone for the blood test and there I was, a mommy alone with her broken dream: the perfect family.
What is a perfect family anyway? I guess all families have their worries and struggles and there is no intense happiness in life without moments of sadness. Accepting imperfection and embracing difficulties as part of life is something we all have to learn at some point, and you have just made that learning process a whole lot faster for us, Mathis. You have brought us so much more than worries. Above all, you have brought us the simple joy of belonging together.
You will be turning 5 tomorrow and look at you now: the quiet little baby, of whom we had no idea what to expect, has become an expressive toddler boy who loves cars, soccer and Peppa Pig. You have your personality, you got invited to your first kids party this year, you feel part of your little group of toddler friends, just like you feel part of our family. All this makes me so proud and grateful.
As October is not only your birthday month, but also Downsyndrome Awareness Month. Let’s take this special occasion to look at some of your milestones this year and let me reflect on 5 things you taught us.
Celebrate your tribe
We are your tribe, Mathis and you belong here with us. Your family is the world for you and you make that very clear to us. When I drive on the porch, you ask “papa home”? Or when you and I bought the groceries and we head back home, you ask “papa – ee (which means Eline)”. When you don’t want to go to school, you say “vake (granddad)”. It shows how important the family context is for you, and to me it creates that tribe feeling, the feeling of belonging together. Earlier this week, doing a group hug with the 4 of us and singing “vrolijke vrienden (jolly friends)” made me realize the value of such moments: we have to celebrate our tribe, because it makes us feel right where we belong.
Routine is holy
Ah routine? There is something self-contradictory about it. When I was a teenager, I thought routine sounded boring. A bit further in my career I discovered that successful people with busy lives have habits that help them to be successful: call it routine. Not boring after all then? People with a disability also need a lot of routine, not because their lives are so busy, but because it gives them peace of mind. Things that are recognisable are easy and less demanding from a cognitive point of view. Mathis needs a lot of routine too. The fixed day scheme in toddler class is helpful, but also at home, he has habits such as always closing doors and always putting his cuddly bear in the same spot in his bed. A bad habit is that he is lazy and still wants to be fed – preferably by mom – instead of eating by himself. Eating moments with Mathis stay difficult. Apart from this bad habit, routine is great, because it structures the day.
10 minutes focus time
Mathis has an extremely short task span, which is a challenge if you want to sit down to learn a new skill. From his special needs teacher and his physical therapist, I have learned that variety in exercises is extremely important to challenge him and keep him motivated. As an adult, when you are in between 2 tasks, you may ask yourself the question: what can I get done in 10 minutes? Well, you’d be surprised. If you set your mind to it, you can really be productive in just 10 minutes. When I see that the time is right, I can sit down at the table with Mathis and do a little word card game with him, to expand his vocabulary and train his recognition of written words. We always choose words that he likes, such as chocolate milk, Peppa Pig or car. With a little help, Mathis will memorize the written words and will show the correct word card with his finger, when I ask him. My 10-minute word wizard 🙂
Playing is learning
In March Mathis received a vintage Fischer Price play house from some friends of ours. Since then, he plays with nothing else. It is absolutely adorable to see him play with toys from the early 1980s, when I way a toddler. He does role plays with his little Fischer Price family and it is a great way for him to use his fantasy. This independent way of playing is a huge step forward compared to last year. Playing with others is something that Mathis appreciates, but he cannot initiate this kind of “playing together” yet. This will be something new to learn in the coming months. It is s wonderful to hear from his school teacher that other kids tolerate Mathis in their game and even actively involve him. Even more wonderful is the soccer team for kids with a disability here in our neighbourhood. Mathis is the youngest one on the team and he loves it. It is great to see your kid with a disability participating actively in a sport club.
Surround yourself with good people
It has been 5 year now, living with Mathis. In the beginning, I was afraid. Will I be able to keep doing to job I like, to have the kind of fulfilling life that I want? No, it is not always easy and yes, we feel limited sometimes. But we feel we are not alone on this journey. We are surrounded by good people. This might be the most valuable piece of advice: whatever your challenge is, don’t try to do everything by yourself. Find people who are good at what they do and allow help. We have help around the house, we have lovely family and neighbours and parents of friends of Eline, the care team of Mathis has a number of very dedicated people, whose passion is to see kids like Mathis thrive.
So this is it. A reflection on the 5 last years in my life and the 5 first years in yours, Mathis. Not the life I had imagined, but sure a very rewarding journey. I feel grateful that we are surrounded by loving people on this journey with you. Thanks to those people, I can still live the fulfilling life that I want, with time for friends and sports and an adventurous job – I am writing this post from my hotel room in London 🙂 Let’s keep on learning together, my beautiful Mathis. I am sure we still have wonderful times ahead.