L.H.
I do not have experience in this but I am very close to someone who has. My close friend has 4 children and three of four have genetic disorders. They are also on the autism spectrum. She went through denial for awhile and then grief. She still has times where she grieves what she thought her family would look like. She also deals with a lot of judgement sometimes because her kids look typical and they are not. She gets bogged down with all the dr appointments and sometimes she just has to take a breather from the docs.
Please know your feelings are normal. There are parents who are walking the same journey. I encourage you to seek a support group not only for how you are feeling right now but because you will probably learn from others who have been where you are.
I am careful not to tell my friend I know how she feels because I don't. I do try to encourage her and remind her she's a wonderful mom because she is and she needs to hear it.
She has made peace with her feelings of disappointment but she can become discouraged because not only does she have normal parenting issues, she deals with a myriad of medical issues as well. She's an extraordinary person and I admire her.
Blessings of peace as you walk the path you have ahead of you.
L.