My dream as I was growing up was to be a mum, and in 2004 that dream came true… I
found out I was pregnant and I couldn’t wait to meet my little baby. My pregnancy was strange all the way through I thought, when I raised my concerns to my OB he told me I was probably panicking over nothing and to try not to stress about it anymore. I was 33 weeks when after a routine ultrasound found the baby had stopped growing, my OB said he would try to get me to 37 weeks and see how the baby is then….
On the 4th of May 2005, I was admitted to hospital after the baby hadn’t gained any weight and I was booked in for a C-Section the following day. At 2:05pm 5th May 2005, my tiny baby girl was born weighing 4lb, 70z 43cm and head circumference 28cm. Cruz Remi.
The doctors were running blood tests on her and as a new mum I just thought these tests were routine, she had her SWISH hearing test and failed however I was told the cups were too big for her ears so they would repeat the test again in a few days. One night at 11pm a nurse came in to check my OBs and said “Do you know what the tests are for that they are running on Cruz”? I said “No, I just thought they were routine”. She then went on to say “Ask the doctors tomorrow” and then she walked out!! I worried all night after what the nurse had said.
The next morning I was standing beside her crib when the doctor came over and said, “You do know you baby is deaf”? I was 22 years old and a newly single mum. I didn’t know what to say so I just nodded my head. They did another blood test on her and also me and then sent us home saying he’d call when the results were back… I was devastated how would I cope with a deaf baby? Little did I know it was going to get a whole lot worse in the weeks to come.
My mum and I went to the doctors to get the results I remember sitting there and him saying something about Cytomegalovirus and then he said she’ll more than likely have Cerebral Palsy and that Cruz would have seizures. He just didn’t know when they’d start or how bad they would be and that was it. I have no idea what else was said over the next hour I was in shock to say the least.
My mum asked him what are the chances of me having another baby with CMV and he said 80% (after researching CMV, I found this to be untrue) and I remembered saying “well that’s it; I’ll never be able to have any more children, I can’t do this to anymore babies”.
I came home and cried for about a week straight I think, then I thought ok that’s enough this isn’t doing either of us any good. I started researching everything I could about Congenital CMV and the more stories I read the more scared I was becoming.
Cruz started having seizures at 2 months and to date I think that watching her have seizures has been the worst experience I have had, it was nothing for her to have 60 + seizures a day. I felt so helpless and it tore my heart apart watching her go through them. The first 2 years of Cruz’s life past in a bit of a blur. There were so many appointments and stays in hospital I feel now I never got to enjoy her as a little baby the way I should have. I’m not sure how I coped with being told my daughter would never walk, talk or be able to do anything for herself but I did and the older she got the easier it became to cope.
I feel like I’ve been through the dark side of CMV with Cruz, sort of like we were in this tunnel for 2 years and then all of a sudden we came out the other end and things started to get easier and lighter. I believe this is why I don’t find it hard to cope anymore and I just take it as it comes now instead of worrying every minute of everyday about what is going to happen.
I get so angry if Cruz is in the hospital and a nurse or doctor treats me like I’m stupid and I know nothing. I’ve been this little girl’s mother for 5 years now and I know her better than anyone. I’m so happy when someone is interested in Cruz and her medical problems because now I love explaining CMV to people, whereas 4 years ago I’d just cry if someone asked me anything about Cruz.
I get upset when Cruz looks at me sometimes because she hardly make eye contact however when she does I feel like she’s looking at me and saying “Why me mummy”? With her eyes, that breaks my heart.
Since having a baby with CMV, I feel like I can get through anything that is thrown at me, I’m stronger. I’ll speak up for myself now and especially for Cruz if I think I need to and I have so much respect for parents of kids with disabilities.
I now have a 5 month old little girl; waiting for her hearing test to come back was horrible. I was so scared she would be deaf too. I think she has shown me how much I missed out on with Cruz as a baby like watching her reach her milestones. I never got to see that with Cruz and not having to worry every 5 seconds about seizures or what might have set them off.
I love both of my girls more than the world but I have a different love for Cruz. It’s not any more or less but I’ll never have to watch my youngest daughter go through what Cruz has been through.
I think when you have a baby and then you are told something is wrong, you need time to deal with it yourself first before you can answer people’s questions. I’m sure it took 12 months to admit there was something wrong. Now when I look at photos of Cruz as a baby, I can see that she did have a small head but at the time people would say “ah how come she has a small head”? And I’d be like “No she doesn’t”. She was just my little princess. I couldn’t see what they were seeing. You can’t rush someone to admit their baby is different because to them she or he is just perfect!
Cruz hasn’t had a seizure for over 12 months and she can now roll, smile and laugh and to me that’s all I ask of her because when she does these things I could cry with happiness. People often say “Ah it must be so hard having a child with CMV” but I never see it like that. However there are days which I call my “Down Days” where I cry all day and ask “what did I do”? But I’ve never known her any different. To me she’s just my special little girl who I thank everyday for choosing me to be her mum!
Shared by her mother, Brianna