Parents:
Sergio and Ana Simoes
Profession:
Mechanical Draughtsman
Labour Consultant and Mommy Blogger by night
www.mygiftsfromabove.com
Age of parents:
40 and 35
Child’s name:
Luca
Age: 6 years
Diagnosis of child:
Lack of oxygen at birth.
Luca was perfectly fine in utero. A little underweight but his doctor said he was fine. The day I went into labour was a disaster. I had requested a caesar instead I received hours of labour. By the time I was fully dilated my doctor waltzed in and said I had to have Luca naturally,I received a spinal block just before the third last push.
Luca was beautiful, he made this sweet little cry and then there was nothing. The labour ward was crazy that morning as all the babies decided to arrive at the same time. The hospital was understaffed and a young nurse(agency nurse, I believe) was dragged into the delivery room with us. Completely unprepared she just dropped her handbag and began assisting that she had never been to before or briefed on what to do. Needless to say when the doctor handed her Luca she hadn’t a clue and my doctor wasn’t bothered until my mother screamed that Luca was going blue. She hadn’t suctioned him. He shouted out whilst sewing me to give the baby oxygen. She was so nervous she dropped the oxygen line on the floor. After that he was only seen by a paediatrician in NICU an hour and a half later. We were there for about 8 days.
At 4 months.
We noticed he wasn’t responding visually – he was diagnosed with a squint and given glasses. And, Oh how I have been publicly reprimanded for this, one stranger came up to me asking if it was a joke that I had Luca wearing spectacles…. Aaaiii we have learnt so much about human nature since having Luca - both good and bad.
At 8 months.
Luca had his 1st epileptic seizure – a complication as a result of the lack of oxygen at birth – he has been on Epilim twice a day since. He also had poor muscle tone – which has improved tenfold.
We were told he had a genetic disorder called Angelmans Syndrome – he was tested but the results came back with no abnormalities. For years, I felt doctors blamed me for his “genetic abnormality”, it was a terrible guilt to carry.
What are the biggest challenges facing your child on a daily basis?
I can’t say challenges because this little man of mine just doesn’t believe in the word “challenge” , he is such an inspiration to myself and everyone he comes across. There is a daily and constant need to get up and go, to succeed, and boy does he amaze all his therapists on an ongoing basis.
He does get frustrated with his lack of ability to communicate with us.
What are the happiest moments you have with your child on a daily basis?
I’m lucky that both my boys are morning people, they wake up smiling. I get to Luca’s bed and his staring at me with the most amazing smile - what a way to start my day!
Are you married?
Married.
Has your special needs child had an effect on your marriage?
We often reminisce about our second honeymoon in Zanzibar, our carefree days before our children, life before kids is a bit of a blur now and we are happy with our little family unit. We decided last year that I would stay home permanently from work. Both Sergio and my parents were working parents and like so many parents of this era, working parents miss out. We wanted this for our children, a mom who is always available for the children. We are truly blessed that we can do this.
Are your family and friends supportive?
We have the most awesome and amazing support system ever. There are two very hands on grannies and aunts and uncles who would drop anything if need be, also loads of cousins who just adore our boys.
My friends have been amazing and those friends who have become new parents teach their little ones that Luca is the same as them. They are raising children that won’t be prejudiced against those who are different.
Lastly there is the amazing Julia our very special nanny, she adores my children. Julia works with us Monday to Friday. We both attend all of Luca’s therapies, on the days where I cant do Luca’s therapy, she is able and willing to take over home sessions, do exercises, play time etc.
What has your child taught you about yourself, both positively and negatively?
Positively:
My little boy has shown me, that nothing is impossible. I see the Lord’s work in him and our lives, I witness little miracles daily – things that the doctors thought he couldn’t or wouldn’t do. The reality of our life with Luca and what he has shown us is that through Christ all things are possible. My little boy has taught me that I am stronger than I thought I could ever be. Three days after his birth I had a Neo-Natal Nurse shout at me after my 1st attempt at bottle feeding Luca. That night I almost lost all confidence that I could do this….but I pulled myself together, there wasn’t going to be any postnatal depression for me. I made a decision right there that this little boy needed me to be best mom I can be. Before Luca, I made lists, lots of lists, this was all thrown out the window the minute he was born. Don’t get me wrong I still make lists but they are more like guidelines.
Negatively:
I started off being very defensive and very afraid of people’s reactions towards Luca. Strangers would approach me and reprimand me for bringing a new born out (he was already 5-6 months old) I dreaded shopping with Luca in the beginning because of the stares and the questions, I once had one woman tell me I needed to love him more!
Looking back I wish I’d shown a little more back bone and told them to shove it. In saying that I have also had people approach us and ask us if they could pray for our little boy.
My biggest pet-peeve is when people don’t have much to say so they say “Ahhh the Lord only gives special needs children to the strong blah blah blah” I’m now nice enough to say that’s not true, there isn’t anything special about me I am no stronger than the you or the next mom.
Do you take time out, if so what do you do to relax?
Time-Out???What is that??? I would call my blog my outlet (www.mygiftsfromabove.com). We do try and have a date night every so often but that’s easier said than done as we don’t have any live in help.
What has made the biggest difference to your child's quality of life?
Being a full time mom allows me to be more attentive and active in Luca’s daily physio / occupational and speech sessions along with doing the “homework” we get from all our therapists – this has really changed his quality of life. He is now a completely different child,everyone who knows him says the same thing, over the last year a light has just been switched on in Luca. He is making more eye contact, has become a lot more verbal or shall I say vocal and a lot more adventurous - walking has given him such freedom and independence.
What is your dream for your child?
My plan for the future of my children is to give them the best in life. I dream of a generation that will not be prejudiced against those with special needs. My daily prayer is that I live a long life so that I can look after Luca. I pray that one day when Joshua (my youngest) finally meets his partner that she will not only fall in love with him, but with his family and be kind and patient with Luca.
