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Raising Special Needs Kids Raising Special Needs Kids

I need a safe place to get advice.

Posted by on Feb. 26, 2014 at 9:37 PM
  • 7 Replies

Normally I go to my group on facebook that has a lot of friends in it because they know me best but the reason I need to vent involves someone in the group. Back story is this.

Through a group of Facebook that I am very heavily involved with since the beginning of last year that involves all special needs mom's in my State I met my best friend. At first she was only a name in the group but later on when we were both in the PICU and Austin was fighting for his life she was physically there. When most f our family could barely be there and my husbands job required him away. Austin was fighting for his life and I was holed down in his room barely able to get up to take care of myself. Because of N (the wife) and B (husband) I was about to finally feel like I had someone who cared about our situation. When we were in and out of the hospital they were there the entire time with only 5 or 6 days out. We both went to the same floors so it became a frequent thing they'd be in Austin's room and we'd be in her daughters room so someone could leave. When I would actually leave to spend time with my oldest/husband/family they'd be there taking care of Austin. 

There were times where the husband would make an appointment to get my hair cut down in our resource center. Remind me to shower. To eat. They are truly my husband and I's best friends. Last October after getting a G tube she got worse and things got messed up with her other pre existing conditions and things turned out bad. They thought she was going to be able to make it but at the end her little body was giving up. This child was like a third child to me and had been something I revolved my life around as much as Austin and Justin. The day that she passed on I went before work to sit with them. They had to eat and didn't want her alone so I held the almost dead baby to comfort her and speak to her. It had been a position I knew eventually i'd be in with Austin because of how on and off sick he gets and where a cold almost has killed him several times. 

I held this child in my arms and had memories of Austin and would this be me any time soon. After work (they waited for me to be there for them) I left work and went to the hospital. I was there for my best friends as they lost their daughter. When everyone was there leaving them alone as they held the baby girl who passed away within 3 minutes of the vent being removed. Their family left them and their eyes pleaded to me not to leave. So I didn't leave. For many hours I sat in the room and held the baby off and on as she was in heaven. 

With saying this since that day I had been there for everyone. i hope get fundraising done (many of you seen it on fb), I went and hoped with arrangements and went the whole day to the funeral and everything they needed me. I am part of the Palliative care program like they were and actually referred them to the program to help them through this. Since those moments every time we go into the hospital I have anxiety. More so than before because he it was Austin was dying when our journey emerged together and ended up being this little girl 2 weeks from being a year old. (her funeral was on his first birthday). Austin's about to have surgery on Friday for a VNS which is minor neurosurgery. We will be in one night because his pulmonary status is so bad sometimes and they are concerned. I am having panic attacks. I want to tell my best friend about this but I know she'll blame herself. I want to explain to my husband how hard it's impacted me and every time I got to go to the hospital or might go the reason I have panic attacks is because of these mometns I was being a good best friend. I know i'm worrying over nothing but I don't know what to do. The anxiety medicine isn't working and has been upped. I don't know if anyone been through this but I need advice even if it's someone saying it'll be OK. I don't know. I wish I could go to my best friend who was there another time when we almost lost Austin and he had a turn for the worse afterwards (Beginning of this year.)

I feel like I've almost Austin more times than I can count and the possibilty is over there but seeing what I seen has put me to the point where it's more real? Sorry for ranting. 

by on Feb. 26, 2014 at 9:37 PM
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Replies (1-7):
Momof4AEMW
by Silver Member on Feb. 26, 2014 at 9:47 PM
2 moms liked this

It is terrible when anyone loses a child, and certainly you will see the correlation between this little girl and your child if they are fighting a similar illness.  I would feel the same fear going to the hospital and re-living that experience.  Have you tried counseling to help you get through it?  It's almost like you need to go through the grief process or some process to find your closure on the situation and separate it from your own child.  I just don't know how you would do that on your own and think maybe you should talk to someone about it.  I hope you can find something to help.  I'm sorry for the loss of your friend's child.  That's very sad. 

arkansasmama08
by Gold Member on Feb. 26, 2014 at 9:48 PM
Wow mama. You've been through a lot. I would just be honest with her. I think y'all are close enough that you don't have any thing to worry about. Maybe just ask if she could come sit with you while you wait for his surgery.

I know it's scary, but just because she lost her little girl, doesn't mean you're going to lose your son too. And I know losing her had to break your heart too. I'm so sorry for what you've been through. I hope everything goes well. Sounds like you've got a tough little guy on your hands 😊
letstalk747
by Joy on Feb. 26, 2014 at 10:13 PM

 this

Quoting arkansasmama08: Wow mama. You've been through a lot. I would just be honest with her. I think y'all are close enough that you don't have any thing to worry about. Maybe just ask if she could come sit with you while you wait for his surgery. I know it's scary, but just because she lost her little girl, doesn't mean you're going to lose your son too. And I know losing her had to break your heart too. I'm so sorry for what you've been through. I hope everything goes well. Sounds like you've got a tough little guy on your hands 😊


Linagma03
by Gold Member on Feb. 27, 2014 at 12:51 AM
This. She said what I was thinking.

Quoting arkansasmama08: Wow mama. You've been through a lot. I would just be honest with her. I think y'all are close enough that you don't have any thing to worry about. Maybe just ask if she could come sit with you while you wait for his surgery.

I know it's scary, but just because she lost her little girl, doesn't mean you're going to lose your son too. And I know losing her had to break your heart too. I'm so sorry for what you've been through. I hope everything goes well. Sounds like you've got a tough little guy on your hands 😊
darbyakeep45
by Darby on Feb. 27, 2014 at 4:52 AM

I agree with these ladies.  Talk to her.  I can't imagine what you are going through.  Hugs!

jjamom
by Michele on Feb. 27, 2014 at 8:03 AM
I think you could talk to her, I would just maybe say "I'm so afraid of losing Austin". I think everything else wouldn't even need to be said and she would get it. She can offer you the support you need and I'm sure she wants to give.

I have been in the panic mode, before my son's heart repair and we had just lost a couple of babies in a Down syndrome online group and one in our local group. I didn't have the connection you had exactly, but I get that panic. I almost turned around and came back home the morning we went to the hospital, but I knew it had to be done or we'd lose my son eventually from the defect, as he was getting sicker and sicker. I cried and prayed, pleaded really all the way there. I guess the one I let it all out to was God.

I'm so sorry for your loss as well. You have the need to grieve the loss of this little girl as well.

I'll be praying for you all through this. Hugs!
special.mama
by Member on Feb. 27, 2014 at 10:14 AM
1 mom liked this

Thank you guys so much. I appreciate it sooo much. 

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