This has been such an emotional journey so far. Had a good cry with my husband the other night, and tried to explain to him again where I am coming from, and why I am so sad and angry. I don’t know about everyone else but I am so angry these days! I see people feeding their kids crap, ignoring their kids, not strapping them in seatbelts (and all of the above is common here in Singapore), and it makes me so angry because I have done EVERYTHING right by my kids and yet my son has this disease. It makes me angry knowing their kids will probably grow up and live long lives despite all the wrong things their parents have done! I just don’t understand why it happened to our sons. My mum says that God chooses special people to look after these wonderful kids whose lives are compromised. I no longer believe in god though – I can’t understand why god would do this to such perfect little human beings. And I’m not just talking about MD, I am talking about all those horrible diseases kids are stricken down with. I am sure that everyone in this boat has seen their fair share of this and I am sure it breaks your heart each time. I bet you never thought it would happen to you though, and never even thought how you would cope if it did. I know I didn’t. I still wake up and think it’s all a dream. My heart is broken and I don’t think it will ever be mended! But I need to keep going on and being optimistic for my son. Each night, we massage and stretch his legs and each night he tells us that it hurts, but he knows we have to keep doing it if he wants to be strong like Superman. Isn’t it ironic, that superman is his hero?? The man of steel! I hate the irony!

Anyway, some background history about James - James was born 3 days late after a torturous and long 34 hour back labour (born in Tokyo, and the Japanese don’t believe in epidurals – ouch!) He was perfect when he was born, though he had some meconium aspiration and stopped breathing 4 times in the next 24 hours due to the meconium clogging up his airways. In the end, we left hospital when he was two days old and thought nothing more of it. He achieved all his milestones at the normal times, although he hated tummy time and he never crawled. People told us he would catch up, but when he started walking just before 12 months, we forgot all about it. He could walk, but he kept falling for no reason. We never realised it at the time, and just thought all kids learning to walk fell constantly until they truly found their feet. It never bothered us that he couldn’t run (he tried but it was a kind of waddle). He had a permanent bump and bruise on his forehead where he kept hitting each time he fell! When we went to check out his new preschool, we were amazed that there were no padded mats or carpets on the floor as we were scared to death about James falling. We didn’t realise it wasn’t like this for other kids. He never moved on the change table, he never stood up in his cot, and he rolled everywhere!! It wasn’t until our daughter Charlyse (who is 12 months younger) started walking that we noticed the differences in progression. Suddenly, she was catching up fast! His speech was also delayed, and became more obvious as he started going to school (at 18 months, 3 hours a day for 2 days per week – purely a social interaction decision). On father’s day in 2006, I took him to the kids clinic at a nearby hospital, and informed the doctor of my concerns. I actually thought I was just being a paranoid mum, and that he would need nothing more than some PT and OT and ST. Imagine my surprise when the doctor told me he most likely had MD! I knew exactly what MD was, as I remember a young boy being in the news when I was a young girl – he was 8 and he was dying from it! I cried all the way home, and text messaged Julian on the way. When I got home, we just fell into each other’s arms in the car park and cried. And I think we have cried ever since! I know I stopped eating – I was full of too much grief. When the kids were around, we acted as if nothing was wrong, though I wonder if they noticed they were getting a lot more hugs than ever before? When they went to bed each night, we fell apart!

We have been very lucky with James’s treatment so far. We found a really nice doctor here and she put him straight on Prednisone. He went from 12.5kg to 16kg in two months! He was always a little underweight, but this was ridiculous. IT was at this time that Julian’s sister met a lady at a party who just happened to be best friends with one of the best DMD doctors/researchers in Australia. Her name was Kristi Jones and she is attached to the Institute of Neuro-Muscular Research at Westmead Children’s hospital in Sydney. We got in contact with her, and within a week Julian was flying down with James to meet her. She started James on the Deflazacort trial, and it has been fantastic. He is now running, jumping, climbing, almost hopping, swimming unaided like a fish, and racing up and down steps without any help. His weight has increased a little more to 22kg, but he isn’t fat. He looks like a little rugby player! His face is becoming a little round, but that’s about it. I have to say, his behaviour has changed quite a lot, but I am not sure if that is his age, the steroids or typical DMD brain (dystrophin is used in the brain for cognitive, communication, memory and speech skills). I find he gets irate easier, and sometimes cries for no reason, but the benefits have certainly outweighed the negatives. He is a seemingly normal little boy now, and his speech has pretty much caught up (thanks to some great advice from a speech therapist and some constant work at home). He goes to physio once a week for an hour, and that has also had some great results.

We had James’s genes tested and he is found to have a “single-point mutation leading to a premature stop codon”, or a non-sense mutation. I was also tested and found to not carry the mutation, so they assume it was a spontaneous mutation at conception. That was something of a relief (if it can be called that!), knowing that I probably didn’t give him this disease – I can’t imagine being faced with that knowledge! Still, when I found out I was pregnant with my 3rd child (and I had had 4 miscarriages in the 8 months leading up to it, probably because of all the grief I had inside) I had all the testing done, as there is a 10% chance your eggs might contain the mutation. I found out I was having a girl (had a CVS at 11 weeks), so we didn’t have to continue with the DMD testing. Thank God! I had moments during my pregnancy where I wasn't sure if I have done the right thing, but I also think that this baby’s cord blood may save James in the future (with stem cell treatment), so it is something we really needed to do as well as wanted to do! So we now have a gorgeous little girl called Saraya Grace, and she and James seem to share a special bond - if only they knew how special!!

I have chosen not to get involved with the MD camps or outings at this stage. I don’t think I would cope, and I don’t want to shatter Julian’s optimism. I see my little boy right now and he is seemingly normal, and I don’t want to see him in any other way. I have a hard enough time reading about older boys, and the difficulties they are facing. I just can’t confront them face to face at this stage. I read about it, to prepare myself mentally and emotionally, but I just can’t see it in person. I find my emotional wellbeing is still so fragile that something like this might tip me back into the deep depression I have been trying to avoid. I call it selective naivety!

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Comment by Jeanette Vaughan on September 8, 2008 at 2:44pm
Thanks for sharing your story. It is a rough road. It took me a whole two years to start coping and I am a nurse! I still have ups and downs. Communication is often tricky. Fighting the battles gets tough - whether they be at school or in getting the right care. I had issue with God too for a while, I was angry at him doing this to my boy. But I have learned to love again and hope and care. Hang in there!!! You are not alone. Peace is within you. Just ask for it. -not meant to sound cliche. It will come. Bless you and your son.
Comment by Jill Keenan on August 6, 2008 at 12:31pm
"I see people feeding their kids crap, ignoring their kids, not strapping them in seatbelts (and all of the above is common here in Singapore), and it makes me so angry because I have done EVERYTHING right by my kids and yet my son has this disease. It makes me angry knowing their kids will probably grow up and live long lives despite all the wrong things their parents have done! "
I can't tell you how MANY,MANY times I have said this!! My husband and kids probably get tired of hearing it! But it is so very true.
I know you said you don't believe in God anymore but I do hope that you can find something that helps you cope and deal with all of the many complicated feelings you have/will have. Maybe it's this forum=) I feel your pain in this "journey" we are in and am so grateful that we are able to find others who can help us along. It is truly a blessing!
Comment by Julie Garcia on August 3, 2008 at 11:42am
Sharyn,

I read your story and I do understand your feelings, learning your son's diagnosis and living with dmd. Cherish each moment as you are, surround youself with positive people. I have decided to limit my contact with those who are not supportive and positive.

I have one relative who rarely asks about our son and is always complaining about their life and what is going on. Their children are healthy and they have no financial worries but they are always looking at the negative side in life. I think when dmd enters your world you really understand the importance of enjoying the "good days".

You have a beautiful family and it sounds like some good support.

Thank you for sharing your story.

All the best!

Julie
Comment by Rebecca Saulsbury on August 2, 2008 at 2:44am
Thank you for commenting on my blog about my son not being an angel. Reading what things are like for you right now seems to make that all so trivial. I use wisecracking and yammering on to keep me afloat in all this muck but it took me along time to remember that I needed to laugh and make other people laugh to feel like there was hope for me and my son. It's such a long haul, I can only hope for health and happiness for you and yours. I appreciate your honesty with us and with yourself. Treat yourself well.
Rebecca
PS Your husband has a fabulous name. My 2nd son is Julian (Jules mostly).
Comment by Harold Richardson on July 31, 2008 at 8:14am
Hi Sharyn, your pain is clear and comes "off the page" as does your very aparrent courage. The challenges that lie ahead for you and all parents of DMD children are hard to fathom from the outside and as you so clearly point out many people in the world take their kids for granted. As a close freind of a recently diagnosed dual DMD family and ourselves as downes syndrom parents I can reason with your questions of life in the hand that we are all delt. What I have seen in parents with such special challenges is their ability to contribute to lives of others both inside and outside their own families and you seem no different in this regard. I pray/wish you and your precious family strength and success in the mile stones that lie ahead.

Harold
Comment by Jane Williams on July 30, 2008 at 5:12am
Hi Sharyn, Wow I truly share your pain our story is a little different though, My husband and I had our much planned and wanted first child Ryan in May 2000. I had an easy 4 1/2hr labour and a perfect little boy (who to me is still perfect) He reached all his milestones although was a very clumsy child and very uncoordinated,although nievly we thought he took after me (trip over my own feet on a good day) He has always been a toe walker and last december was formally diagnosed with Aspergers syndrome (a type of autism) which mainly involves misreading social cues from people in his case only mild but they told us the toe walking was tied in with the aspergers,so my husband and I thought nothing of this. In December last year,he couldn't climb into my 4wd or climb up the ladder to his bunk bed,so we took him to our local Gp who looked at me and I panicked. We saw a paediatrician 2 days later and the rest as they say is history. So we are very new to this (diagnosed March 2008 aged 7) and are still struggling to come to terms with things, we don't want to go on Prednisolone as the side effects seem to outweigh the benefits to us. We too are struggling with our beliefs, the kids believe in God and I don't want to shatter their illusions but I am struggling as you are. We also have a 6 year old son Brandon who is unaffected (we think,not yet tested but a very active sporty boy). Love to chat more in depth all the best to you and your beautiful family

Jane
Comment by Star Bobatooon on July 23, 2008 at 1:40pm
Wow. Great job sharing your story Sharyn. My son, Hurricane is 12 years old and uses a powerchair at all times. He was diagnosed when he was five. As I read your story, I remembered each and every feeling you described, the broken relationship with God, the unanswered questions and the selective naivity. All of that makes perfect sense. I would like to chat with you in more detail at another time but I just wanted to say, as a parent who has been living with this disease for 7 years, that I get it and that life does go on, you will laugh again, you will dream again and you will be a stronger person than you ever thought possible.

All my love for you and your family.

Star
Comment by Rhiannon Traigle on July 22, 2008 at 3:01am
I am so sadden by your blog. It breaks my heart to hear your journey and to know that you are in so much pain...not that we all don't feel that pain and understand where you are comming from. I know that we each will have a different journey with DMD and anger, depression, sadness, frustration, questioning, and even smiles are a part of it. I have lived and worked with people my entire life that have be affected by tragedy. My uncle was in a car accident at the age of 19 (almost 20 years ago) and was left brain injuried. He has loss of vision, slurred speech, and memory loss. He will never be 'normal', never be married, have children, or maintain a job. My family suffered greatly knowing that the three other teens in the car were high and drunk and are not the ones left with life altering disabilites. When we found out about my son Riley, my husband and I kept asking 'Why us?' Riley is a beautiful child on the inside and out. I could not understand why God allows this to happen to our children. There is a part of me though that cannot live with anger and be saddened all the time. You mentioned the selective naivety...maybe that's me, but I have come to think of it this way...all the hurt and tragedy in the world doesn't seem to have any reason or pattern, so instead of thinking 'why me' I kind of realized 'why not?' What makes me think that I could walk this earth and never be affected as greatly as other wonderful people have. I am not angry with God because I don't think he causes this. I cannot allow myself to believe that he would want his 'children' to suffer because as a parent, I don't want mine to. I have to believe that my son and all of our sons will not live and die in vain. This does not mean that I too do not get angry and that I am not deeply depressed when I look at Riley's beautiful face. I too cringe everytime Riley puts on his Spiderman, Superman, Batman, Poweranger, etc. costume and how he talks about his 'super powers' and 'big muscles'. I think I just try to count different blessings now. I am so glad that I, like you, am able to be thankful for the time I have with my children when others take it for granted. It is sad that I am praying and will be so happy if my son has a stop code! I guess I just wanted you to know that for me, a painful part of this journey is seeing other parents in pain. I hope that you can find some peace or at least comfort with all of us here and that we can all help each other get through this.
Comment by MarcosDad on July 18, 2008 at 4:54pm
You and your husband are not alone in your journey. I could copy and paste this article of yours and call it mine and my wife's and it wouldn't be a lie to keep it exactly the same. Strange how we all follow the same path. We too have a hard time with MDA camps, still cry, hug the kids constantly, shed a gut when we see the older boys in wheelchairs and on respirators. We really don't know how we move on, but when asked, we spew out the canned version of how we were given this job from God to take care of these little ones, knowing very well that is not how we really feel, but it sounds good.

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