Hello. Needing some emotional support

[tpapke]

Hello. My name is Tera, and my son (turning 4) has severe micropthamalia in his left eye. This has been a very difficult journey. And it still is - I cry as I write this.

We are in Iowa. When my son was born, nurses and doctors shook their heads and apologized. Nobody knew what was wrong with my baby or why. I cried. And I couldn't stop. I kept apologizing to my baby, and I had the worst overwhelming guilt. I thought, "I couldn't make a normal perfect little baby. My body has hurt you, and I'm so so sorry.". I couldn't stop crying, I couldn't eat, and then I couldn't nurse because my health began to suffer, and I felt even worse. What continued this despair was that nobody could help me. Nobody could answer questions, nobody could tell me why, and further fears were raised with possible kidney, heart, or brain complications from this mystery affliction. After we finally got a diagnosis term, nobody seemed to have any accurate information (if any at all), and the internet had nearly nothing except scary pictures and garbled medical articles. University libraries had nothing to offer. I just had to try to be strong, and it's been hard. I needed to stop crying in the corner or the bathroom of any public place we were, and hope to get myself composed and together. Nobody seems to know much, and we can't seem to get any kind of help from any medical organizational charities. We have spent many days with ocularist, struggling to pay the thousands of dollars for shells/conformers, and prosthetic eyes. The emotional piece is so much more costly than the actual monetary cost. This has been rough, because I've felt alone and guilty. I stumbled upon the ICAN website. I really would like some support. Can somebody please help me?

Tera

[lazer]

hi

I know how you feel.3 months ago I became a single parent of my 7 yr old daughter who had to be removed by child protection from her mother.

I now have to deal with the emotional backlash of that as well as the day to day raising a blind child.

She refuses to wear sunglasses, so i have to deal with the stares from people.
My girlfriend of 3 years bailed because she did not have the determination required.

You must just be strong and know that what is inside is most important,and don't forget to treat yourself well,it's not your fault.

It is a great challenge,take it head on,no shame!

lazer

[Rosemarie]

Hi Tera
Sometimes bad things happen to good people but the differece is how you handle these bad things. When my son was born with micropthamalia in both eyes, I was depressed for days and could no stop crying. I asked myself, why me? I did not want to go to shopping centres or to visit friends. People treated us differently and we lost many friends because they did not know how to handle the situation. We whent for various genitic tests and I also though that I did something wrong. Then I decided to be the mother I promised myself to be. I started to execpt what happend to me and more imported to my child. I started loving him and carying for him and enjoying him. My son is 21 year old now and if I look back I will not change one thing. This situation teaches me so many things, I have grown emosionaly, I have become I person with so many skills. To have a child with a dissability is not easy but it is a blessing. You might not think so now but I can promise you that one day you will look back and you will see what I see today. I enjoy my son so much, he makes me laugh, he understands me, I made the the mother I am today and I have a bond with him that is so special. Love your son with all your hart, stop asking questions, ecept your situation, love yourself and understand that you are special that is why you were chosen to be his mom and you are going to be wonderfull because you care.

[Jodi]

Beautifully said! Thanks for posting such a great response Rosemarie.