Special Mom
Raising special needs children has taught me so many things. I know other parents would benefit from what I have learned and I want to share those things. I find it difficult to find time to write things down. One day I hope to compile my short writings into a more complete book. I am going to jot some things down now.
The very first thing that comes to my mind, is leave fault and blame out of it. Judging anyone, yourself, or anything for having a special needs child will not help or solve anything. Every child is a blessing, no matter what! They were created for a purpose, even if just to learn the "least of these." After having my first son, and experiencing the hardships of special needs, finding out I was pregnant again was a scary thing. Of course I wondered if I could do anything or change anything so this would not happen again. The truth to this answer is no. I had a family member who had a child the same time I did, however she was a drug addict and very unhealthy, yet she had a healthy baby. I ate extremely healthy with my first son and second, but I can't say I ate very healthy with a couple of my children. I took aspirin for a couple pregnancies, as well as high levels of folic acid. I have had many people say very mean things to me, telling me if I had done one of many different things, things would be better. This is just simply a lie. Of course studies have shown certain things can cause defects or issues with babies while they are developing, like radiation, and certain medication, but most mothers do not purposely expose themselves to things they know are harmful. I did the best I could with all of my children.
The next thing I think about is research. The best thing I ever did was research everything I could about my children's conditions. I asked as many questions as possible, even the hard ones. I know this is not easy for everyone, but you will and must be an advocate for your child. You can not expect anyone else to do it for you. The more you know, the better advocate you can be. Believe me, the medical field is full of people who are arrogant, and will claim to be superior simply because of a degree. Do not let them intimidate you. You know your child better than anyone else. Trust your gut. If something doesn't seem right, research it. Keep pushing for answers. With Elijah, I was told for almost 2 years that the only reason he was throwing up five to a hundred times a day was simply re-flux and he would grow out of it. I just knew that re-flux would not cause a child to need to be tube fed for all nutrition, even with that, medication and elemental formula, the symptoms would not be controlled. I pushed for a second opinion. I remember this clearly, as the doctor said to my face, "it's not like he is dying or anything!" I could not believe my ears. I knew I was entitled to a second opinion so I pushed for it. After the second opinion did not produce results, I pushed for a third. Again, we did not have an answer, so I pushed for a fourth. This is when I was told about an invasive study that could be done, but it would require a hospital stay and a good amount of travel to the location. The doctor I spoke to felt it was not worth doing the study and said it would not change course of treatment. I disagreed. I pushed for a 5th opinion, this time traveling from Virginia Beach to a Motility specialist in Columbus Ohio. I met one of the leading specialist in the world, and she was happy to do the testing and give us the answers we so desperately needed. Sure enough, we did get an answer. The test showed that the nerves in Elijah's stomach and intestines were dead and not working. There was almost no movement in the digestion track. Unfortunately, their is no cure for this as science at this time do not know how to regrow nerves.
If you know and feel that more is going on with your child, keep pushing for it.
The last thing for this I will write about it, know who your real friends are. We learned very quickly that many people could not handle or be around us any more because they could not or did not know how to handle us or our son any more. This is ok and I know it will hurt, and will make you feel betrayed, but it is for the best. You do not need these type of people in your life. Let them go and do not stress over it. You will find new friends that really care about you and will be great supports for you. For those that hang in there and help you and go with you though the struggle, cherish them with everything you have. Be sure to thank them whenever possible. They can get overwhelmed at times, just as you can, but a thank you goes a long way. Not just a verbal thank you, but a written note, a gift, or kind gesture. Hang on to those people. If you have no close friends, it is ok. It may be that way for quit some time. Seek assistance through what ever programs you can find. Even online support groups can be helpful and encouraging. You got this and are special yourself. It may be a rough road, but I promise your child or children will bless you beyond anything you can imagine!