Our life in a nutshell :)

Our lives as a family of four is chaotic to say the least! I wanted to start writing a blog about our lives with our two boys and how hard and challenging it can but also how very rewarding life can be with a special needs child and a (I hate this word!) normal child. If writing about our experiences helps one other family then it is worthwhile.

Our world turned upside down on the birth of our first boy Ryan who is now 11. Unbeknown to us Ryan was born with down syndrome, something that we weren’t expecting and were not at all prepared for! It was a struggle at first to get our heads around this let alone having a newborn baby to care for. You look forward to taking your newborn baby home to start a new chapter of life but we never dreamt we would have to take our baby boy home via another hospital so he could have his heart scanned, it took out the excitement and joy of taking Ryan home for the first time. Luckily Ryan only had a small hole in his heart, which throughout the years has virtually healed up. Slowly and surely we settled into our family of three and the many hospital appointments and therapy appointments we needed to attend. Ryan had many ups and downs in the first few years of his life, he was admitted to hospital several times with pneumonia needing oxygen and antibiotics, I will never forget the dreaded phone call I received at work when Ryan was about 5 years old, I can still remember the teacher ringing me and saying all of a sudden Ryan is struggling to breath and we have called an ambulance, the worst possible images were going round my head until I saw him being carried out of the ambulance into hospital, another bout of pneumonia that totally floored him. Still now he struggles with chest infections. Nevertheless the years passed by with the three of us and it mainly consisted of appointments for Ryan and therapy that he required. Ryan reached his milestones a lot later than the majority of our friends babies. It was hard to see how different Ryan was and how behind he was compared to a ‘normal’ child but along with that it was also very rewarding and emotional when he did those things. Ryan only learnt to walk the month before his little brother was born, we were so proud of our boy who had worked so hard to get there and finally he took those first few wobbly steps . Just after Ryan turned 3 his little brother Noah was born. We had our hands full with two young boys but gradually we adjusted to being a family of four with a newborn baby and a toddler with special needs, at times things were very hard as Ryan needed a lot of attention and sometimes it was just purely exhausting. Ryan and Noah are totally different characters, Ryan being our quiet little boy and Noah being our little ball of energy, which he still is.

Being a mum for a second time to Noah did at times feel like I was a first time mum again. I wasn’t used to how quick he hit his milestones and he was progressing at the same time as everyone else and it just felt like finally we fitted in with everybody else. Sometimes though it did feel totally alien to me as well.

As the boys have grown up, Ryan now 11 and Noah 8, we have hit several hurdles along the way. As brothers they are following totally different paths in life, not how we thought life with kids would be. Before Ryan was born we just assumed everything would be fine and we would have a healthy baby boy who would hit his milestones at the same time as everyone else and who would go to a mainstream school like the majority of other children. It did feel very isolating at times as friends who had babies the same age as Ryan were progressing on and sometimes it felt like we were being left behind and people didn’t know what to say to us or how to be around Ryan. It felt especially difficult when we made the decision to send Ryan to a special needs school. We looked at mainstream schools as well beforehand but made the decision to send Ryan to a special school as this was the best place for him to be able to learn valuable life skills that some of us just take for granted, and to gradually learn how he can be as independent as possible now and in later life. It was hard making the decision to send Ryan to a special school, Ryan started travelling to and from school via school transport in a taxi. This was great for Ryan and that little bit of independence for him but it meant we didn’t have the normal experience of meeting other mums and dads in the school yard and Ryan building up friendships with other children. Gradually through activities and events at school we met other families in the same situation as us and to this day we have made some very good friends. Ryan didn’t have a lot of the experiences other children would have at the same age such as going to peers birthday parties and having play dates outside of school. He has been to a few parties but nothing like it can be in a mainstream school where sometimes there seemed to be a stream of party invites! When Noah started nursery and first school again it felt like a normal life meeting new parents and Noah making friendships, at times like that it really hits how different life with Ryan can be.

Well I have waffled on enough for now! In my next few blogs I am going to be talking about a variety of things including respite, down syndrome and autism, holidays and family life in general, hope you enjoy reading about it!