Are you there God? It's me Jessica.

Jessica - posted on 05/19/2012 ( 2 moms have responded )

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I have a 9 month old son with a developmental delay in gross motor and fine motor. We have been through so much in the last 9 months that you would think he was 12 years old. CT scans, MRIs, weight checks, "he may have cerebral palsy" he doesn't have cerebral palsy, sometimes we just don't know what's wrong...
He wasn't born premature, but only weighed 5 pounds. Today has been a low day for me. I get paticularlly sad when I see my friend's babies on facebook who are younger and sitting up and crawling or I an around another baby close to his age. I just want to see the light at the end of the tunnel. This has really challenged my faith. We did everything right. Why is this happening to our baby? Will he ever be able to have a normal life? Will he be bullied? Will he be in special education forever? I'm glad I found this group because no one knows what it feels like except those who have gone through this. Even my parent's who are very supportive don't completely understand what my heart feels like. I'm sure many of you have felt this way or do feel this way.
Will it ever feel better?

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Michelle - posted on 05/22/2012

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You are lucky to have supportive parents. I had quadruplets in December 2007. The day after I had them my daughter, Martha, passed away. I had moved back to where my parent's lived because they said they would help. I called and told my parents my daughter had passed away. Instead of hurrying to my side my mother spend 2 hours getting ready to leave the house and then went to Walmart for an hour and a half of shopping before coming to the hospital. To this day she does not understand why I am hurt over this.



The other three children survived but they are all disabled. James is in the best shape. He is autistic but apsie-like so pretty high functioning. Margaret has brain damage and presents as high-functioning autistic. She has a LOT of quirks! LOL Joseph is developmentally delayed with hypotonia. He is 4.5 but is small in size and weight, wears a diaper, started talking at 4 years old, eats only baby food, and drinks a bottle.



I have been trying to get a diagnosis for Joseph. His MRI and genetic testing was all normal. I did finally find a sympathetic pediatrician that diagnosed Joseph with CP for me since he presents EXACTLY like CP except for visible brain damage. Otherwise we were not able to get services for him easily.



My husband and I had been trying to have a child for 6 years before we went to an infertility specialist. We were told we had a 7% chance of having more than twins and less than a 3% change of having triplets or more. We NEVER imagined I would become pregnant with quads. We thought we might lose a baby but we thought it was going to be Joseph because he was having SO many problems in the womb. We NEVER thought we were going to lose Martha, who was the second largest baby, and that Joseph would survive. We had all most lost Joseph three times before he was a year old. He had ALL sorts of health problems. We had the choice to do a selective reduction. That is just a nice way of say abortion. We could not do it. If we had they were going to "reduce" baby A and B or C. It would just have depended on who they could have gotten. I would have lost my daughter Margaret and either James or Martha. Joseph could have survived in a better environment for him and may not have the problems he has now. There are just TOO many factors for me to know if I had changed any of my decisions it would have made a difference.



I wonder all the time about my Joseph. I worry about who will take care of him when I am gone. I think James might be able to. Margaret I am not sure. Then the person who takes care of him will they treat him right? Will he wind up in a group home or something? I hope Joseph will be able to hold a job. At least a menial one like bagging groceries. I know Joseph will forever be slow and labeled as mentally retarded unless I can figure out a diagnosis for him. Even then I might not be able to do anything to help him.



I had SO many dreams and hope for my babies. Now much of that is gone. I try and not think too deeply about their future. I do what I can, at the present, to make each day for them as best I can. I work with them all to try and teach them the things they will need to know for school. Some things work. James is 4.5 and is reading on a grade level of the end of first grade (1.9). It took me three years to quit grieving so deeply over the death of my daughter Martha and blaming myself for it. I still grieve but it is not a constant thing now. Mostly during their birthday. Though my initial dreams and desires for my children will never come true I have come to know my children now. They are strong and determined. They are fun and loving. We have all created new dreams for their future and we are working on making those dreams come true.

Liz - posted on 05/21/2012

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Iam a mother of 3 yr twins that will be 4 in July and I also have a 2yr daughter she will be 3 in Sept. but one of the twins has alot of health problems cerebal palsy,brain deficey, and he doesnt eat solids at all and he has a feeding tube. Its hard on me everyday wanting know if he will every have a normal life to this day we have not found a doctor too help and gentics doctor we saw in April 2012 want see us again until next year. We even moved too a different state for a special daycare for him but doctors here have still not been able too help. He only weighs 21 pounds just wish a doctor or hospital would help more been looking for other hospitals but nothing yet.
Some days I blame myself and others Iam just so lucky too have him all together. He healtier than most kids I guess.

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