I mentioned in a post last week that I get wistful at this time of year. The August winds are heavy with the scent of spring’s pollen and it takes me back to a time of great expectation. Today I’m sharing our story and about finding out BJ had cerebral palsy.
PREGNANCY/LABOUR
I was heavily pregnant and waddling around, literally, in the last weeks of my pregnancy with BJ. Like most first time Mums I was filled with a mixture of excitement and anxiety. I’d always loved kids and spent as much time with them as possible so my fear didn’t stem from how I would handle motherhood but from the actual labour. They call it labour for a reason, right?
My days were filled with nesting, resting and mother and daughter outings with my Mum. “What a charmed life”, I think when I reflect on it.
I laugh thinking of my husband and I chatting with anticipation of meeting our little person. We didn’t mind if the baby was a boy or girl as long as all went well. We did of course discuss things like whose nose we’d prefer the baby to get which now seems ridiculous in the scheme of our life.
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| Note the stylish maternity outfit. Last trip to Blue Mountains before D-Day and the car broke down! I thought I may give birth in a very natural way. |
The labour went well, uneventful and relatively short. That is not to say it didn’t hurt – A LOT! We checked and our little baby boy came with 10 fingers and toes and seemed absolutely perfect. Breastfeeding proved a toe curling experience but by the time I left hospital we had got to a stage where neither of us was crying over the process.
BRINGING BJ HOME
I marvelled as I left hospital that we arrived as a family of two and now we were driving home with a new person in our family. It seemed odd that everyone was going about their ordinary day to day life in the cars around us and yet today was life altering for us. I felt like waving to them and pointing in the back of our car to show the excitement of our day. I didn’t of course because that would just be weird.
We had three blissful months of just caring for our baby like any other family arriving home from hospital. There were the usual things like sleep deprivation; mountains of nappies to change and with every burp a baby sick up. It was all very normal.
DIAGNOSIS
It was around the three to four month mark that the questions started to invade my mind and also the clinic nurse’s. BJ wasn’t gaining good neck control. There were suggestions it was due to his reflux and having less tummy time but I started to get concerned. Each time I’d seek an opinion I’d get the answer I was hoping for, that he was probably just a little slower reaching his milestones. By this time we had an issue with his sleep, or lack of it should I say. BJ would happily sleep in our arms but wasn’t sleeping in his bed. Normal again, right? So off we went to Tresillian (baby school) to get assistance. It didn’t seem all bad at Tresillian. BJ and I slept over and we had all our meals provided, the staff did the first few days of the settling process and then I got involved. BJ proved determined (a signal of the determination of the future that would work against and for us at different times). I always joke that he ‘failed’ baby school and we were invited to return for a second week (fairly unusual). In that week it was suggested we seek out advice from a physiotherapist at a hospital. We once again received reassurances they could ‘get him right’ with exercises. I had a sick feeling over this period but would take hope in every positive that was offered and run with it. Finally we attended an appointment and they advised they felt that BJ had Cerebral Palsy. I didn’t know what that was or how it would impact on BJ or our lives. He was perfect as far as I was concerned and I didn’t much care for a ‘label’, as I saw it.
I once again found myself driving home from a hospital after a life altering moment while everyone around me was seemingly going about their ordinary day. I was shell shocked but didn’t really get it.
I’m glad I had those blissful months of just enjoying my baby without the rigours of therapy. I feel lucky that I didn’t really know the road ahead as I’m sure it would have seemed daunting to a new Mum. One step at a time was easier. I always feel good to know that there was nothing anyone else or I could have done to change the outcome. I had followed the pregnancy books to the letter and know I did my best for BJ.
GETTING ON WITH IT
The next step was just to get on with it. We immersed ourselves in the world of early intervention. We were fortunate, as it turned out, to have a ‘label’, or diagnosis as it actually was. We could immediately get access to therapy and within a short time had therapists guiding us through a new world.
We have always had amazing family and therapy support which has made an enormous difference to our lives.
I may be wistful about my ignorance at the road ahead during my pregnancy but I am also proud of how far BJ has come. We have a few grey hairs and wrinkles which I blame on stressful days in therapy or a particularly difficult stage but we have made it through with our sense of humour in tact (most days). Each day is a challenge but good humour, a positive outlook and fun times spent together have got us this far.
Not every day is easy but my advice to anyone caring for someone with a disability is to look at the little gains and celebrate them. One day hopefully you too will look back wistfully and see you have come a long way.
Please follow our journey day-to-day on facebook, the more the merrier.
oh my goodness I could have written those words exactly. My one year old baby girl has cerebral palsy and it was only at 5 months that we started having suspicions and saw a paediatrician and the past 7 months have been consumed with early intervention. I am so glad I was blissfully ignorant although my god I hear you on the sleeping thing, it was torture until about 2 months ago! I love your blog, it gives me insight into the years to come and hope for the possibilities. Given that we are from the UK living in Australia, travel is an essential part of our life and the difficulties we may face are something I think about often. Keep writing, you are helping more people than you know.
Thanks Cara, it means the world to hear that the posts we do are helpful to other families. It must be difficult for you to be so far away from family.
Early intervention is definitely all consuming but someone wise once told me not to burn myself. I did and it took me a while to find my groove again so take a break and don’t be too hard on yourself. We always use holidays to really reconnect and relax from that therapy grind. Don’t get me wrong it is worth it but take care of yourself. Thanks again for leaving a message. Julie
Hi Have Wheelchair and Cara,
I am also a mom of one and a half years old boy child with CP. When I gave birth to my second boy child I was so happy. I was so happy becaue my family was complete. I had already one girl child.
My world then tore into pieces when I was told a doctor that my son was suffering from Dystonic CP. Dark and all dark seemed the world ahead of baby. I am afraid because I live in India – a very backward country in terms of the treatment and other facilities of CP patients.
I spend my days and nights serving my child. My family life has been ruined. It is impacting on my relations with my husband and others.
I am giving these medicines to my son.
Sodium Valporate Oral Solution (Valparin 200) – 2.5 ml thrice a day
Levetiracetam Oral Solution (Levera) – 5 ml twice a day
Baclofen Oral Solution (Lioresal) – 2.5 ml thrice a day
Levodopa and Carbidoca Tablets (Syndopa 115) – 1 tab daily (1/4th of tablet thrice a day)
Pyridoxine Sustained Release Tablets (B-Long) – 1 tablet a day
Trihexphendyl Hydrochloride Tablets 2 mg (Bexol) – 1 tablet a day (1/4th of a tablet thrice a day)
Biotin Syrup
Multivitamins Syrup
God bless all moms who are caring for their kids well and fortunate that they are living in a place where such facilities are available.
I would like to call upon you all that please help me. My every day is passing thinking I wish I could live in some developed country where my child gets best physio exercise, toys and care.
Pls help.
Thanks in advance!!!
Hi Soghra, Thank you for taking the time to stop by and share your story. I am very aware how lucky we are to have the therapy and care for our son. I am sorry to hear that you are finding it so tough. I encourage you to follow our facebook page (www.facebook.com/havewheelchairwilltravel) where we often share equipment and home-made solutions to problems. I would hope that some of these may be helpful to you. I wish I could offer more support to you but please feel free to post any questions you have on our facebook page and we can see if others can share ideas on how to help. If you would prefer you can personally message me on the same facebook page. I wish you all the very best. Kind regards Julie
Aloha,
I don’t have a website, but my daughter could also have written your story. Perfect pregnancy with Markus. A week before she was due, she wasn’t feeling movement. I told her to go to the hospital and see what the doctors said. Twelve hours later, she had a c-section. Other than a few platelet, and blood count issues, all was good. Somewhere in his first month, we noticed that he was only unclenching his right hand. We continued to observe and would open his left hand as much as possible and massaging a little. He also had horrible acid reflux. He slept in his boppy so that he could sleep. We all had some sleepless nights. As my daughter and I continued to watch him, we noticed him missing mile markers. I was hoping it was because he cried during tummy time and slept in his boppy due to the acid, that he just didn’t have the opportunity to reach those milestones. We checked with his pediatrician who said he was fine, he would catch up and that they don’t start checking for issues until the age of 3. My daughter and I became very proactive about finding someone that would listen. We finally found a pediatrician that had a son with down’s syndrome. Finally, someone that understood that we knew there was a problem. This was shortly before his first birthday. She immediately him up with a county agency for diagnosis. It was at his 2nd physical therapy appointment that it was suggested that he might have cp. We were taught how to due stretches and compressions to keep the tendons flexible. When he finally started walking at about 15 months, we noticed he used his right leg like a crutch. We took him to see our chiropractor. At his first appointment, the doctor held him upside down by his feet. His pelvis was twisted about 50 degrees. We went 3 times a week. Within the first month, we noticed amazing changes. Not the bone snapping type of treatment, but he uses a tool to find the stressed areas in the body and treats them with a little vibrating tool. Most doctors or county agencies will not recommend chiropractic care. I want to say that they should. Markus will be two on August 21st and he’s now using both hands and walking with an almost normal gait. We’ve done the MRI, MRA and blood tests so that we could know the full extent of the damages. He still has things to overcome, but God willing, we will get him there ! Mahalo for your blog and Facebook page. A happy grandma : )
Lovely to hear from you. Thank you for sharing your Grandson’s story. Not only did I find it interesting but I am sure it will be helpful to many. It sounds like your grandson has made amazing progress with love and lots of effort on everyone’s part. I hope that he continues to achieve great things. My son BJ is looking forward to his birthday on 23 August. Keep up the great work and thank you. Julie PS. Hawaii is on the top of our list for a holiday. Last time we arrived just before Hurricane Inniki hit!
I look back on my unknowing days very fondly as well. My son left the NICU with feeding therapy but we just thought it was due to his prematurity. At six months he was diagnosed with CP and suddenly I was thrust into a world of early intervention with several therapists. He was diagnosed 4 years ago this month but it feels like a lifetime ago.
Hi Allison, Those days when I didn’t know were lovely until the shadow of doubt started to move in. Thanks for sharing your story and I hope your son is doing well now. It sounds like a rocky start for you in NICU. Take care. Julie