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Comment by Grace on September 10, 2013 at 10:46am

Niles was my 3rd child.... all of my children were planned and wanted children.... I was a 5th child and was the "Mistake".... the one that caused my mother to hemorrhage....I heard so many stories about how my mother suffered after my birth.... how I was needing others to care for me because she was so sick....  Niles was the biggest child I gave birth to. He was 10 1/2 lbs. and filled the warming bed.  I had amniocentesis while I was pregnant because I had a different OBGYN than I had with my first 2 babies.  All indications were that I had a healthy baby.  I did not smoke or use drugs while pregnant.  I did not find out that Niles had Autism until he was nearly 3 years old. 

My life as well as our children and husband revolved around Niles.  We tag teamed caregiving.... so my other kids as well as all of the foreign exchange students and Mississippi kids we hosted... helped with Niles.  We all loved him.  Niles could be challenging but he also could snuggle.

Several times in his life we had very scary medical crisis's... usually seizures... and many times I read about other families losing children with autism to seizures....  Ironic how Niles had this happen the same day as John Travolta lost his son with autism to a seizure in January.... we were airlifted then too... and we always said "There But for the Grace Of God" when we heard about Travolta's .... little did we know we would be in that same situation come May.

Niles needed a lot of advocacy for his school environment. I traveled the state with other Special Ed folks helping parents get the right services for kids with special needs... in fact I testified at our State Legislation about limiting or eliminating Seclusion and Restraint of our kids by the Public school systems.... after his death.   This was a problem for Niles until his last school year experience.  I could write a book on how Special Ed kids are not being treated right.  it is the current Civil Rights issue that many have dealt with from discrimination.

My kids and the young folks would tell you though that as far as Niles was concerned... He was happy and Loved by his family... at least his closest family.   this is why I just can not get past the fact his extended family like his grand parents did not value his life.

I think theses situations make us re evaluate things... and maybe that is a good thing....

Comment by Teresa D. on September 10, 2013 at 6:15am

For all of us there may be different circumstances but the pain is no different and there is a process we all must go through to find the new us. 

Grace I am so sorry.  For someone to say that to you about Niles and for it to be your own family, is just heart breaking.  

Tell us about Niles Grace, let us know him and love him. 

Comment by Grace on September 9, 2013 at 6:56pm

Thank You all.... I wonder if there is any reconciliation ... so many hurtful things have happened.  I try to see others who have had more serious conflicts... some days maybe this hurt seems minimal to others.... Yet it is so hard not to have the family to lean on....

Niles was a challenge but he was such a blessing.... His life had so much meaning to those he touched..... We hosted so many other children (Foreign and from Mississippi) All had Niles stories of blessings.... they all helped with him and learned from him....  One girl has returned and has her 4 year old.. I was worried how I would feel with a little girl who might want to watch Sponge Bob... (Niles favorite) But so far I am ok.... she is so loving....

Comment by Michelle H on September 9, 2013 at 5:03pm

Grace, it's so hard when family members, the people who are supposed to love us unconditionally, are hurtful to us. I'm sorry that you mom and brother are causing you so much pain. I hope your mom heals physically and is able to reconcile with you and your siblings. I hope she recognized the beautiful blessing that Niles was in your family.

Comment by Jane P on September 9, 2013 at 3:14pm

Grace

You're right, it is sad, such a waste.

We are here for you.

Comment by Grace on September 9, 2013 at 10:59am

I just learned through other people that My Mom may have a Brain Tumor... My brother who is "In Charge" did not call any of her other kids.... this is the same brother who when My mom was having A mastectomy argued with me about coming to her doctor appointments and said that I "should have had an Abortion" instead of having my 14 year old Son Niles who had Autism.... who had been dead for almost 3 years.... My mother heard him and also reaffirmed the idea on a phone call saying that She and My father (Who is now also deceased) Would have "Gone along with what ever Dave and I would have decided to do but because we were going to church we decided that we had to have that baby...."   Needless to say.. I have been quite hurt and estranged since then and have a difficult time with all of this.... seems like my mother has done nothing to make amends and most of my contact with her just involves her stirring the Sh** Pot with her children.... It is really a message that I get that she and my brother really have not talked to any of the other children.. so I guess it is a pity that she has developed such estrangement in her old age.....sad.

Comment by Michelle H on September 9, 2013 at 9:23am

Teresa, I'm glad you have this group to share your true feelings with. First and foremost, you need to take care of yourself and do what's right for you. If it's too emotionally distressing to go, honor that and allow yourself to take care of YOU. Just pray for guidance to know what you need and to be able to follow through without judging yourself.

Comment by Teresa D. on September 9, 2013 at 7:23am

I'm sorry for dumping this on everyone, but it's just so emotionally overwhelming.  I talked to my aunt yesterday and she understands.  Now I need to talk to my cousin.  I don't know if I can handle it all.  With Michael's one year mark coming I am just not in the right place in my mind.  I want to be there for her, but I'm not sure I can be. I need to call her today. 

The purple flowers to me represented Michael and Jake.  The stars are Michael leading Jake to heaven. 

Again thank you for being there and for listening. 

My heart is with everyone!

 

Comment by Michelle H on September 8, 2013 at 6:49pm

Teresa, if you need to go to the wake/funeral for Jake, God and Michael will be with you giving you the strength to get through it. I know this is a very difficult month for you. You have my prayers and love.

Comment by Vasanthi S on September 8, 2013 at 12:05pm

Teresa,

Its so difficult even to hear all this so I just can't imagine how it is, just that its all so much of pain, pain and pain...God help us all..love to everyone- u r all always in my thoughts.

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