Parents, carers and disabled parents
If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

Triplets- one with CP

magicnumbermagicnumber Member Posts: 2
Hello everyone 

As the title suggests, I am a mum to identical triplets and one has spastic diplegia grade 2. They were born at 28 weeks and weighed between 2lb4-2lb10. My CP warrior was the 'heaviest'. 

They did remarkably well at birth and none required ventilation. There was no complications and they stayed in hospital to gain weight which they did successfully and all came home after 7 weeks. They are now 2.5 years.

I first became alerted to F's delay in gross motor skills when she was late rolling over. Physio was already involved and told me that CP is something they will be watching out for. That was in Jan 2015 when my girls were 9 months old and from that day I felt like a black cloud was over me. 

Things improved slowly... she learnt to sit unaided and commando crawl and always stood well on her legs but she couldn't pull to standing or sit herself up off the floor - and still can't today but we are working on it. My head was a constant battle of what ifs/late night Google searches/fears all the while trying to convince myself everything was fine and she was just delayed. My husband was a rock but also probably buried his head in the sand and was convinced cp wasn't there. I think I knew though, deep down. 

She finally got a diagnosis in July of this year - a whole 18 months after that fateful afternoon when the condition was first mentioned. I shed many tears but in all honesty I felt like a cloud had been lifted. Underneath the fear, and on some level - the grief - I felt positive and learnt that it's actually worse not knowing. Knowledge really is power. We could now tackle it head on as a family with no more what ifs. 

She has made lovely progress over the summer. The day after the diagnosis she walked 15 steps aided and now she will walk all over with support. We are due to pick up a lycra suit on Tuesday which we hope will give her the core stability  (she's hypotonic) to make those first independent steps. She has started nursery with her sisters. On a cognitive level, she is bright and her speech is coming on lovely. She also started conductive education which is proving beneficial. 

Life can be difficult. F sees her sisters running and climbing and becomes frustrated and I feel guilty for the amount of time I spend with her because she needs me physically.  I knew it would be hard with triplets anyway but I wasn't prepared for the emotional onslaught this added element has brought. Ultimately I just want her to live a similar life as her sisters...same opportunities, same school, etc. We are all hopeful for the future. 

X

Replies

  • JgeekJgeek Member Posts: 68
    Lovely story thank you and welcome to our community. I have cp and what you say is true, it is hard-not sure my mum spoke about it so well done. but each thing she achieves will mean that little bit more because of the effort you know she puts in. I have 3 annoyingly lovely, intellegent sisters and yes i had days when i thought 'you don't know how lucky you are' but it made me determined to be a role model for younger 2 and to make older 1 proud. Now i have 3 degrees & a full time job.

    your daughter will find her own strength & identity, I'm sure
  • magicnumbermagicnumber Member Posts: 2
    Thank you so much for your lovely reassuring post. I often wonder how or if it will affect her relationship with her sisters so I appreciate your honesty! xx
Sign in or join us to comment.