New Mum of Downs Child

[Eliza70]

Hi, I had my DS four weeks ago and when he was born we found out he had Downs - huge shock, lots of tears etc. Am getting used what as happened now, as is DP, but was just wondering if there were any other parents of Downs children on the board and if so do they have any advice for these first few months. We are lucky in that DS doesn't have any other health problems, his heart is fine and he is feeding well (bottle) and putting on weight. I have been in touch with the DSAssociation but am not sure that I am ready to get involved with them yet.

Also, we were hoping to have another child (we also have a son of 2 yrs) but I am now very apprehensive about this - did other mums feel the same?

Thanks

Hi Eliza,

My son was born in Nov with DS and I can totally relate to what you are going through.

My husband and I would also like to have another baby but are very scared about the possibility of having another child with problems.

We were initially told that our son's heart was fine but unfortunately they have now discovered he has a large VSD which requires surgery in the next couple of weeks.

My husband and I absolutely adore our little boy, he brings us so much joy already. We just want him to have a fabulous life and reach his full potential, whatever that may be.

I have also been wanting to meet other parents who have children with DS as they understand and can relate to what you are going through.

I wish you all the love and luck in the world with your little one. Enjoy this time, babies are so precious.

Hi
Congratulations on the birth of your baby. My daughter is 8 months old and has Downs. She is adopted (I've had her since 3months old) so I can't comment on the shock and grief, but you have my sympathy. My daughter has had a lot of health issues but is now coming through them. My advice to you would be to take each day as it comes and get to know your baby as an individual rather than as a baby with downs. I have joined the Downs Syndrome Association and they have been great. The information they sent me acknowledges initial the grief and shock but helps to look at the positives too.

The only other thing I can say is be prepared for questions if you go to 'mainstream' baby groups. I have found this much harder than looking after my daughter as people seem to feel that they can ask anything, often without any thought about how you might be feeling. Even going to the supermarket can bring out the 'What's wrong with her?' people!

My daughter is slightly behind others in her physical development but I'm learning not to care and am enjoying the things she does well - smiling, laughing, giggling, babbling at me and providing sloppy kisses.

Just want to wish your DS and you tons of luck over the next few weeks kylie68. He sounds tops!

kylie68 Hope all goes well for the op. Expect them to go over any times given. Will be thinking of you all x

Congratulations Eliza.
I really wish I had mumsnet when I had my ds 22 years ago.He hasnt got DS but had an illness as a baby which left him with profound mental and physical disabilities. Regarding the comment about feeling full of self-pity.If I told anyone,the HV,the Nurses etc about my anger,upset,raging against fate etc I felt disapproved of.There was a feeling I got that I should be brave and strong for my son,this was wrong and you should be entitled to own any feelings you have. Shining your post was beautiful,and spot on. My gorgeous son,my beautiful boy,still in nappies,cant feed himself,cant do a thing for himself.Oh God if I could tell you the joy he has brought me,us all.Thats from a mum who was about as devastated and angry and unaccepting as a mum could be.If I could have handed him over to someone,I would have done. It does take time,years possibly,and I still get bad days and difficult times.This isnt about me though its about you,and so enjoy your gorgeous baby.Things do get better but it can take time.My son has enriched my Life and I owe him so much,but it didnt feel like that at his diagnosis of profound disabilities.

PS I had a healthy baby girl two years later.

Shining your post should be compulsory reading