My journey as a mom so far......
My tribe minus one - my Emily!
I think my dream as a little girl growing up was always to be a mommy, I loved playing with my dolls and dressing them up. Perhaps this is every little girls dream, maybe not, but it was mine. You always have this image of a fairy tale Prince coming into your life and a beautiful house filled with laughter, yummy smells coming from the kitchen and just pure perfection.
I got my dream, I found my prince charming and I have my four beautiful, talented, each unique in their own perfect way daughters. My love for my husband and my children is so powerful, there is nothing in this world that I would not do for them and protect them, I am sure this is how every woman out there feels about their tribe. However these last few months have been the hardest and as a mother I am feeling absolutely helpless and this is where reality starts to sink in. Life is not always about the big house, the yummy smells coming from the kitchen and the perfect mom who has all the patience in the world! Being a mom is hard flipping work - especially when it does not go according to plan!
I want to share my story with you, it is personal and it is my story - yet I want to share it as maybe it will help other moms out there who may be feeling the same as me. It is raw and it is real and perhaps by sharing my story it may also be healing therapy for me. I also want to share it with those of you who are my friends on Facebook as well as my Yoga Moms that are wanting to know whats happening and as appreciative as I am for everyone's love and concern, it can be a little hard and overwhelming explaining our journey over and over again.
3 months ago my 9 year old daughter was complaining of tummy aches, naturally as a mom you give them some remedies or medicine and you think that they may have a tummy bug. When your daughter gets persistent and it gets really bad you then realize that you may need a Dr to get involved as you are not sure anymore that this is actually a tummy bug! My daughter ended up in hospital, after many days and tests it was decided that she needed surgery for further investigations. After nearly a month of being in hospital we were discharged and the healing process began. My daughter suffers from chronic constipation so I have to watch her diet regularly and I have found an awesome "mommy medicine" recipe that I make for her that works like a charm when she is battling with her tummy. If anyone is reading this and would like the recipe you can let me know, it is natural and healthy and it actually tastes really yummy! Life now went on and we were once again a happy and healthy family enjoying life. Being in hospital for nearly a month you realize what you take for granted, the simple things, just being together as a family in the evening, or picking up the kids at school. Making a meal for your children and not worrying about what they are going to eat that night. Finally my girl was at school and my yoga and my life was back on track.
I have some photos to share with you of our journey with our 9yr old Jade..........
Jade just after surgery and in ICU
Trying to get up and walk again!
Back home and in recovery mode!
Enter 7yr old daughter! About a month ago my little girl came home and complained of sore legs. School had just started after a 3 week break and she had done P.E. that day so my mommy instincts told me that perhaps she may just be feeling a little sore from the exercise. It was now two weeks later and she was still really battling to walk - we eventually called it the "Frakenstein Walk" so my husband and I decide that perhaps we may need to go to the Dr. It was first thought that she may have Juvenile Arthritis so she had x-ray after x-ray and blood test after blood test but the results were all clear. We were given some medication to help with the nerve pain to see if that worked and if she was still in pain we would need to be referred to a Neurologist. The medicine worked well. Megan was able to bend her legs and we had our little girl back - but only for a short while. The medication given was only for a week, 3 days after the medication had stopped our little girl could not walk again and seemed to be in even more pain than before. We eventually one evening had to take her into casualty the pain was so bad and she got admitted. A neurologist was referred to us and we did more tests after tests - my poor baby girl has been through so much already and my gosh this child is a trooper! Finally the Dr's decided that she needed to have an MRI of the spine and the Brain. I really thought that it would come back clear and that they would not find anything - they found something though. Megan has what is called Syringomelia or a Syrinx in her spine. This means that she has a cyst full of CSF which is the fluid that runs from our brains to our spine and it protects us against any injuries. I have attached a picture for you to see what her syrinx looks like. It is all in white and it is really big!
MRI of the spine showing the Syringomelia
So now we know that our little girl actually does have something wrong and we now need to get a neurosurgeon involved. Unfortunately the neurosurgeon that was referred to us was away and we had to wait in hospital for 3 days to see him. After much googling I realized that I was now going to have to endure another surgery with my 7yr old daughter and I needed to prepare myself, yet nothing could prepare me for the frustration that lay ahead of me. As far as I was aware and was told is that Megan would need to have the syrinx drained and a shunt placed in the spine, that was it! Sunday arrived and it was the day we were going to see our neurosurgeon, my mom and dad traveled from Pietermaritzburg to Durban so that they could be with us when we saw him, we were told he would be there around 11am. After a 6hr frustrating wait we starting getting a little angry (just a little) and the nurse contacted the Dr only for us to find out that he was only landing in Durban at 8pm and would see us around 11.30pm. We had the option to see him in his room the next day and get discharged so we decided that this is what we wanted to do - as well as try and get a second opinion. On the Monday we managed to get an appointment with a second neurosurgeon. This surgeon wanted to operate on Megan the following week and drain the syrinx and place the shunt, the news we were given shook us to our core, we were told that if we waited too long our little girl could become paralyzed! We went to see the next Dr that afternoon who took 3hrs with us. He was concerned as to what had caused the Syringomelia as it is very rare and it often occurs in people that have suffered major trauma such as a car accident or if you have a tumor, more news to try and digest. That Monday evening Megan had a "seizure" type episode where she collapsed and just went limp and could not talk, luckily my husband was home and he rushed her straight back to casualty. I can't explain how hopeless I felt and the emotions that were running wild. I called my mom in a panic and she managed to calm me down to some extent and I had friends coming over, one who took me to the hospital and one that came and sat with my other two girls at home. I will forever be grateful for the two of you. Megan was admitted yet again. Megan once again continued to have more blood tests and a 24hr EEG, this is where they place a some weird wires on your head and monitor your brain movement. Imagine being 7yrs old and having to do this!
The 24hr EEG
Exhausted Mommy & Megan
Always trying to be cheerful!
Our Neurosurgeon that we felt comfortable with advised us that this was unfortunately out of his league and he would call on some other surgeons and try get some more advise and refer us to some other neurosurgeons in the country to try and help us. We respected and appreciated his honesty. Only one of those surgeons was available to us at the time and he is in Bloemfontein. My husband was in contact with him and after reading and looking at all Megan's scans and reports he confirmed that she would need surgery where we would drain the syrinx and place a shunt in. We were all set and ready to go, we got discharged on the Saturday so that Megan could spend some time at home with the family before my mom and I drove the 7hrs to take Megan for her surgery where we were told to be expected to stay at least 10 days. There were however many unanswered questions. On Sunday evening my brother who lives in the Caribbean was our hero, he had managed to get a hold of a neurosurgeon in America who was kind enough to talk to us on the phone and look at her scans. He advised that we wait and that putting in the shunt could possibly be one of the worst things we could do. Everything suddenly went on halt and we decided to get another opinion - if possible!
We sent out the email that was given to us by the American Neurosurgeon to everyone that Monday morning and we waited. Luckily our Neurologist gave us another surgeon to go to and he then advised that we needed to have another MRI, this MRI is called a Cine. I am proud to say that my little girl was the first girl ever at Ethekweni hospital to have this MRI done without any General Anesthetic or sedation. This MRI has confirmed that Megan has Chiari Malformation 1 with Syringomelia. Not many people have heard or know about this!
We are now in the present day and a week has gone by where we are waiting to hear on surgeons from Cape Town and Durban to decide when and where Megan will have this brain surgery done. In the meantime I have had to stop working as a kids yoga and mindfulness teacher as Megan is a full time 24/7 job at the moment. It is exhausting. Megan has developed insomnia now and we often only go to bed at 2am and we are awake at 6am. The pain she feels is so very real and it breaks my heart as there is absolutely nothing that I can do to help her. Megan has lost the sensation in her legs already, so if you place a very hot spoon on her leg she will say it's cold, we don't know if she will ever get this back. Megan can't walk unassisted at the moment and I know that in her heart she worries that she may never walk again. I always try to reassure her that she will get better. I now know that my training as a kids yoga and mindfulness teacher has helped me with this journey we are on at the moment. I have had to learn patience, a lot of it and I am still trying to master it. I am fortunate enough to have my husband who is my rock and thankfully we have a solid relationship - yes we have had our moments but together we are a team.
At this present time we are still waiting to hear from the surgeons, every day we call the offices to see if we can get an answer from them and we get told that they will get back to us at the end of the day - it is a long day and by 6pm you realize that another day has come and gone with no news on when your baby girl will have her surgery.
My story is not to get any sympathy or recognition but to share my journey with you and for those that are interested, perhaps there are other parents out there who have gone through the same thing?
What I have learned so far:-
Be grateful for the time you have with your children, we often get so impatient with them and when you have to spend time away from them you regret those small things that may not have seemed big to you but they were huge to them.
Be patient, everything that is meant to happen will happen in it's own time. Perhaps we are not supposed to have the operation just yet and that is why we are waiting as frustrating as it is.
Remember that the journey you are on and the dreams that you have may not always go the way you expected, but this is what was chosen for you and the Universe will never give you more than you can handle.
Smile at everyone you come across and acknowledge them, everyone may be facing their own hardships and battles and a little encouragement goes such a long way.
I will continue to share my story with you on Megan and how her progress is doing.
