I know there are many ways that professionals and experts tell us how we should be dealing with a child with a chronic illness/developmental delay/or some sort of special needs...I want to give my version of it...it may not be the best, but this is mine...
1) write, write, write. I feel the best therapy for a parent who's facing a stress different from everyday normal stress...the stress of either losing a child or having a child with many medical needs....is to write everything out. Write down everything from appointments, unusual activity that your child has shown, to your feelings and day to day life. Doctors are going to ask you a lot of questions...and it is all basically up to you as to what YOU see YOUR child doing or not doing. In writing a journal...for me, going back and looking at where this journey started off...to when I thought I was loosing my twins at 6 weeks...I have learned that I am strong. I have written letters to my angel baby Nick, poems to all my children, my anger to different situations, my sadness of wishing this all was just a bad dream...just everything, even if it seemed stupid AFTER I wrote it. One thing I have learned with writing is that I have many days of struggle, sadness and anger...oh and a whole lot of exhaustion, but I am making it through all of this (even coming out a stronger and better person), and so will you. And who knows...one day your journal might make the best sellers list. tee hee.
2) Share your story. If that mean joining a parent support group either on line or in real life, do it. There is strength in numbers. You will not feel so alone in your struggles.
3) Use what you have gone through to help others that are facing what you've gone through. There is always something to be learned and shared in every situation. It is your job to do what you want with that knowledge. With me, I have volunteered at the Hospice to help others who are dealing with chronic illness or death of a child. It makes my son Nick's death and my son Kenny's complex medical needs something that is not in vain. It gives a reason for what this is all about...helping others.
4) Use respite. Ok...ok...this is one that I have not used...but I heard it wonderful. I am so badly in need of this one. I am adding this to my list because I haven't used this and want all of you to know that when you don't get a break from your "new" life, that it will catch up to you and you'll get burnt out (which is pretty much where we're at). Don't be afraid to ask for help. Don't be afraid to say you need a break or that you want to be able to do something with your other kids to make their lives as normal as possible. Don't feel guilty with saying you need a break either! So yeah...still working on this one over here at the Tomecko house.
5)Make sure that all plans are not set in stone. Because honestly...there will probably be a situation where you cant do what you wanted to do because of a medical or special need of some sort. There has been many times (weddings, shopping trips, visits, and also the far and few date nights) that we had to cancel things due to Kenny getting really sick or go into one of his screaming/headbanging episodes.
6) Use all the resources possible. Get your butt online and search. Go to your health provider, therapists, teachers, foundations and places of worship...and find all you can do/use for your child. If your child qualifies or SSI...get that child on it. If you find that you cant afford something that you need there are foundations that can help. There is always someone/somewhere that can help or at least lead you in the right direction. There are disposable diapers for older kids, medical supplies, quilts, photo retouch of angel pictures, just tons of resources and websites (some of which are highlighted).
7) Have good communication with your spouse or significant other. Make time (even if its for just a few minutes) to give each other a big bear hug, a quick smooch, or a loving look. Tell each other how you are feeling. Use each other for support...remember those vows (if you're married)...in good time and bad, in sickness or health...I know I botched it up...but you get the idea. Even with 7 living children, we still find time for each other. Keep the communication open and the love strong! Also love your children and show them its alright...different, but alright.
8) Try to look at the positive side of things. With having a child who has many chronic/special needs and also losing a child, my anxiety has gotten the best of me. DONT let that happen. It got to the point where I am afraid of a little bit of a messy house (with 7 kids, it happens), campfires, pools, even playing in the yard...for fear of having another child die. Try not to let this happen. PTSD is not something to have to live with. Get rid of negative people, situations and feelings. Seek help if you feel that its getting to you.
9) I guess this one should be part of the respite one...but here goes...First off, know its alright to cry sometimes. Its OK to be angry, jealous at others, sad and grieve at broken dreams. But also remember to look at the positive. To take time for yourself. Cut coupons, take pictures, surf the web, bake something, rearrange the furniture, garden, sew, exercise, buy new underwear (tee hee)...do something for yourself. You deserve it...you've been through a lot.
10) Take a deep breath and have faith. There is a reason...a lesson that God wants you to learn.