I was thinking back to the first time we ever heard a diagnosis, and I was trying to relive the feelings and emotions I had at that time. I have come up with seven honest tips. I don't want to sugarcoat anything therefor some of the tips may even sound a bit harsh, it was not meant that way.
1. Breathe - take a deep breath and let it out. Take a couple more. It's going to be okay. Sounds cliché, I know, just do it. It may not feel that way now, but things will get better. You will get into a new rhythm and things will start to make a new kind of sense.
2. Talk to your other half - this is very important and gets neglected a lot of times. Tell your spouse how you feel. If you're angry, say so. If you're scared, admit it. This is a huge hurdle that has been placed on your path. Your journey is about to take a drastic turn, you need to be on the same page. If you are not on the same page, work together to get on the same page, otherwise things will only get worse.
3. Ignore unsolicited advice - oh boy, the advice well meaning people will try to give you will be overwhelming. My advice - smile and nod. Take the pieces of advice that you know will help you but ignore the rest. You will find your own answers in time.
4. Research - this is a tricky one to advise correctly. Do your own research and make notes as you search for answers. Take these notes with when you speak to doctors and discuss it with them. The doctors involved in my sons journey are all very open minded people who listen to the parents of their patients. Make sure your childs medical team are on board and committed to your child's health. If you feel they are not a good fit, look for recommendations for medical professionals from people in similar situations. This leads me to the next point.
5. Build your tribe/village - you will need support on this new journey. Talk to your family and extended family and ask if they will be willing to support you on your new path. You will likely find a lot of moral support from your close family, you will however need physical support as well. Ask if they will be willing to look after your child for short periods of time. You need to take a break from your new journey every once in a while.
There are many other people on the same or very similar path as you are on now. Search the internet for blogs and forums about your childs newly diagnosed disease. You will find a lot of support and comfort from other parents going through similar circumstances.
On this topic, here is a very useful blog post which lists practical tips on advocating for your special needs child.
Wrae's blog is about mental health and parenting - as her tag line states - a bit of an interesting mess. Go read her blog now!
6. Don't forget about your other kids - this one is probably the most difficult piece of advice to follow, but it is also the most important. Your other kids are terrified at this stage. They probably don't understand the new terminology and they are overwhelmed with uncertainty. Talk to them. Spend time with just them. Make sure they know their family foundation is still rock solid. I often feel really sad for my youngest son. He has never known a "normal" life. He is the youngest, therefor Jacques has always been in his life. I had 22 years of a "normal" life before Jacques was born. It's a scary thought actually, to realize Ruben has never known life without autism or diabetes in it. But I have to add, Ruben adores his big brother and I don't think his thoughts have ever ventured in the same direction mine has.
7. My final piece of advice - pray. This is a very personal thing. This is between you and whoever/whatever you believe in. Personally, I believe in God and in Jesus Christ. But pray. Talk to your maker. Fight with him. Plead with him. And always remember to listen for the answers. And they will come, if you keep on praying, pleading, fighting, begging, you will get the answers. They may not be the answers you were hoping for, but they will come. So make sure you recognize them.