Academic success and my CHD child

Dr Sullivan warned us that with the type of Heart Condition our unborn daughter had, it was highly likely she would have DiGeorge Syndrome, Chromosome 22 deletion. One of the signs was the absence of a Thymus Gland, he had been unable to find one during the scan. Potentially, our baby would have a Cleft Palate, would have facial anomalies, would have problems with her immune system (due to the absence of the Thymus Gland) and would have learning difficulties.

I rationalised in my head that if we found a Cardiologist who was willing to give her a chance and perform "technically demanding" surgery on a newborn baby, then we could give her the additional support that a child with DiGeorge syndrome would need. However, a week after Martha Grace had her first Open Heart Surgery we found out that she doesn't have any chromosomal abnormalities. Although this meant there was no reason behind her Heart Defects, it did feel like one less battle our baby had to fight.
Since she was born, everything Martha has been through, every milestone she's reached has been a miracle for us simply because we didn't think she'd ever have the opportunity to achieve them. Every birthday is a blessing and I pray it won't be the last. We were overjoyed when she learnt to walk, were delighted when the learnt to speak and cried buckets on her first day at school.

She is now in Year 1 and on Tuesday evening we had our parents evening appointment with her class teacher. As we waited to be called in we had a look through her drawer at her school books and saw what work she'd been doing, reading the lovely comments the teacher had written at the bottom of each page. The teacher was full of praise for Martha, telling us how her reading and writing was coming on in leaps and bounds. Socially, she's very bossy and doesn't like it if someone doesn't want to play with her and play on a particular day.

We all want our children to do well in school, we've been brought up to believe that academic achievements are the be all and end all. We need to have the best grades so we can get into the best universities so that we can get the best jobs.

I think I've pushed Osh the hardest because I've always felt that I have a lot to prove, I need to show that my son hasn't been at a disadvantage because his Mam was 19 when he was born. Isabella and Martha have grown together, they've started doing activities at home at the same time as eachother and have been read the same stories from the same books. They have similar homework from school because there's only one school year between them.

But I couldn't help but wonder on our way home, how would I have felt if the teacher had said that Martha wasn't doing well, that she was falling behind the class. How would I have felt if Martha still couldn't read or write?

I'm probably going to offend some people now, but to be honest - I wouldn't care!

I've watched this little girl have to learn how to breathe for herself, watched her re-learn how to bottle feed. I've seen her come out of theatre from a 5hr Open Heart Surgery on a Thursday and be sitting on her train coming home by Tuesday. I've seen her wince in pain as our GP has had to remove the stitches from the site of her chest drains with only Calpol as pain relief.

I can't expect her to survive everything we've put her through, supersede all our expectations of her resilience and then go to school and be a whizz kid there too. We can help her with school work.

It's a dream come true that she is able to attend mainstream school, anything else is just a bonus.


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