Do not grieve, for the joy of the Lord is your strength... Nehemiah 8:10
If you know God, you start to cling, cling, to His promises.
When your child is diagnosed with special needs, you are thrust into a world filled with the unknown. You start visiting hospitals and specialists. You not only have a pediatrician or a primary care physician, you have a neurologist, an orthopedic surgeon, maybe a neuro/psychologist.
You begin to have all sorts of evaluations and treatment prescriptions. Your child starts seeing physical therapists, occupational therapists, speech pathologists. You have consultations with people who can help with adaptive equipment, communication devices or sensory integration. Your child may need medication that needs constant blood tests to determine effectiveness or making sure the meds don't damage other organs in his/her body. There could be surgeries to help ease some issues. There may be feeding problems or sleeping disorders.
Dental work now has to be done with anesthesia, which means possible hospitalization. Other testing such as EEGS, MRIs, CT scans, blood work ups (which are many) may all have to be done under anesthesia.
Then there is the educational aspect. Again there are evaluations and IQ testings. You may begin sending your child to a special school at 12 months old. There are IEPs (individual education plan) every year. You meet with social workers, service coordinators, counselors, and teachers. There is the issue of transportation. On and on it goes.
In the mean time, if there are other children in the home, you are trying to keep things as normal as possible, so you are running them to school and to after school activities. Helping them keep up their school work and home work. Wanting them to have friends outside of the home. Going to conferences and meeting with teachers. Well, you know the things an average family needs to do...
The average middle income family may have insurance, but it will only cover so much and there for, many of the medical expenses have to come from the parents. Because you make too much money (the government decides what is too much and believe me it is not very much) you do not qualify for governmental aid. PT, OT and speech is usually not covered, at least for us it wasn't. Many medications are not on the approved list. You want your other children not to go without, so you are paying for the gymnastics and music lessons, the soccer and art clinics, maybe even private school. What little bit of money you may have, if you have any left over, you put away for college. There is no thought of retirement. The father is working as much overtime as possible or taking a second job just to make ends meet.
You can see how much stress there is for a family, and the parents are exhausted most of the time. They never take time for themselves. It takes everything they have just to crawl into bed at night, only to start all over the next day. Sometimes the parents don't stay together, it is just too hard.
We are the exception, God miraculously kept Kevin and I together. We grew stronger (not without difficulty) and made it. I cannot image what my life would be without the love of God. Kevin and I have learned to laugh and rejoice in the mundane. We appreciate the quiet times and look for ways to share God's love with others. We thank Him for teaching us so much and hopefully we are able to teach others what we have learned. We love that our daughters have developed compassion for those who are weak and hurting because of their experience and love for their brother.The Lord is my strength and my song; He is my God and I will praise Him... Exodus 15:2