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How am I supposed to feel?

Sun, 14/01/2007 - 22:19 — moodystar

My son was born with a cleft lip and palate. It was not picked up on any of my scans during my pregnancy so when he came out, I was a little shocked. I went through a miriad of emotion. Was this my fault? What did I do wrong? I even felt a little envious of the other little babies in the ward - perfect lips and palates. Those mother's didn't know how lucky they were. Did the other mother's look at me with pity? What was I going to do when little old ladies looked into the pram and saw my baby - do I say anything, explain, what? I felt ashamed for some of the thoughts I had. I loved my baby dearly and had an overwhelming desire to protect and love him. But I was grappling with my own emotions with all this too. In the end I went and saw a counsellor. I had to express my fears to someone - someone who was going to hear me rather than say 'Oh, don't worry, that's easy to fix'. This was a comment that often sent me spiralling even further down the road of confusion. Was I being self indulgent? Am I not supposed to feel anything about this since it's so easy to fix. Maybe I'm wrong to worry at all. There were times I really wished my boy had been born without this problem, and I mean I really wished hard that this had never happened to him. These days I'm a little more relaxed about the whole thing. I've had a chance to work through some of the emotions I felt. I would love to know how others handled their emotions and feelings when they learned of their cleft baby. My baby is just over twelve months old now and I love him to bits. As crazy as it might sound, his cleft makes him all the more special to me - but that's a whole other post!

‹ born cleft My Life ›

Your Feelings Were My Feelings

Hello Moodystar!

Just like your case, Rachel's clefts were not detected on any of my ultrasounds during my pregnancy. The news of her clefts were a complete and udder shock to us when my OB/GYN found it upon delivering Rachel via an emergency c-section.

For days following Rachel's birth, both me and my husband, as well as her grandparents, grieved for the 'perfect' baby we didn't get. We had spent 9 months praying for our baby to be born healthy, with all it's limbs and fingers, etc. We were devasted by the news she was born with a birth defect. In those days following her birth, we cried. We cried a lot. Off and on for months following, I had times when I cried. Just sitting here writing this post has me all choked up thinking back to the begining of Rachel's Journey.

In reguards to being envious of the 'perfect babies' in the nursery, I was too. Only it really hit me hard when my close friend and neighbor next door delivered her baby girl two months after me. I went to visit her in the hospital and to see the baby. She had such a perfect little lip. A perfect nose. I cried all the way home from the hospital. I was jealous.

Until Rachel's lip was repaired (at 5 months old), I was really self conscious of what others out in public might think. But I didn't let it stop me from going out into public, I did keep the canopy of the infant carrier up. I wasn't ashamed of my baby. I was afraid of the hurtful and mean things people would say, or not say, but their stares.

You were perfectly normal to have all the thoughts and feelings you had. Having a baby born with a birth defect really takes a toll on the mother.

I don't know if your little guy has had his lip repaired yet, but if I could offer you a piece of advice...be taking LOTS of pictures of him. You'll miss that wide smile for a while, once it's gone.

Blessings,
Darcy
Rachel's Journey http://rachelsjourney.blogspot.com

Tue, 16/01/2007 - 13:33 — Darcy

Sympatico

Thanks Darcy for your comments. Good to know I wasn't abnormal in what I went through. I too get a little choked up when I think back to those early days of grappling with what all this meant for our son, for us. I am Per's mum by the way. It's lovely to know you have been following his progress from the other side of the world. I saw the pic of Rachel. What a little superstar! Funny what you say about missing their wide smile when the lip is repaired. That's exactly what happened. It had become such a part of him that when it was repaired we sort of missed it in a funny way. I think only the parent of a cleft baby would understand what I'm talking about. I'm sure other parents would recoil in horror if they heard me say that. Anyway, thanks again. Warmest, Tania xx

Wed, 17/01/2007 - 14:12 — moodystar

best to you

You are such a good mom to love and protect your child as much as you do. I was born with a double cleft lip and palett in 1967. Surgerical procedures have come such a long way since my first one was done. I've seen kids today who have such a tiny trace of scarring, etc - it is amazing. My mom was very honest with what she felt after I was born. It was a total shock to her when I was born. She covered my face to protect me from questions also. The hardest part for her was sending me off to school, knowing how cruel kids can be (believe me, they were). she was always very loving and very supportive - and yes - very protective. Your little guy is very lucky to have a mom like you.

Sat, 27/01/2007 - 10:08 — dunyana

Thanks Dunyana

Hi Daunyana, I loved reading your posts and it such an honour to have you offering your advice and support to Cleftworlders. Thank you so much. I would love to hear some more of your story and the experiences you have lived through. It's funny, you mentioned how kids can be cruel. I immediately thought how this has already been a concern to me - and Per is five years away from going to school! I do try to keep things in perspective, worry about today not tomorrow kind of thing but occasionally I do flash forward and wonder when he might begin to notice he is different. I always suspected it might be when other people point it out. I shall take on board your point about remaining honest with my son. And thank you for your honesty Dunyana. I will look out for your posts.

Sat, 27/01/2007 - 19:20 — admin

feelings are normal

Don't worry my parents went through the same thing. We had no previous hisotry of this, but we dealt with it, as a family. And thats the best way, as a family, you need to be strong, you have your ups and downs. The laughs, the cries.

But honesty is the most important......my parents were always honest with me, with operations, what was happening to me, cause at the end of the day i had to be ok with what was going on.

stay positive guys!!!!

Mon, 05/02/2007 - 12:02 — tonyd
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