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Please Talk to Me! I Need Help :-(

Anonymous
Posted by Anonymous
  • 42 Replies

I have 5 children. Of my 5, 3 have SCID. For those of you who don't know what that is, it stands for Severe Combined Immunodeficiency, also known as "bubble boy syndrome". They were all diagnosed at young ages. My 8 year old was 2, my 6 year old was 22 months and my 1 1/2 year old was diagnosed last month. I feel like my world is falling apart. It's been really hard keeping everything sterile. My 8 and 6 year olds require round the clock care because of their nearly non existent immune systems. It is so time consuming that I haven't worked outside of the house in 5 years. My days are spent schooling, cleaning, schooling, sanitizing, bathing, wiping, changing, sanitizing. I sanitize my hands so often that they are dry and cracked and sanitizing them further is sooo painful.  Usually I'm ok. I do everything I have to do to make sure my girls are ok. But now my son has been diagnosed. The immunologist said his immune system is in better condition than my 8 and 6 year olds. That doesn't make me feel better. He will still rarely associate with kids his own age. He will still have to be homeschooled and have to deal with constant and frequent hospitalizations. He is still being robbed of his childhood, just like my daughters. 

I'm crying as I write this. Today was a rough day. All of my children have a cold. ALL of them...including my 8, 6, and 1 year olds. About 75% of the time my 8 year old gets a cold it turns into pneumonia. I called the Dr. and he's starting my 8, 6,  and 1 year old on antibiotics as a preventative measure. My 8 year old does not feel well. She's been crying about stomach pain all day. My 1 year old has screamed non-stop most of the day. My other 2 have practically been neglected because I have to spend so much time taking care of the other 3. It hurts my heart to have my 10 year old ask me if she can have some mommy time and I have to tell her no because I am cleaning and sanitizing, sanitizing and cleaning. She tells me she understands but...well, how could she?! She's still a baby herself and it's like she doesn't have a mom because mom always has to do something else :'-(

I just want to grab my babies and run away. I want to run away from SCID. I want to run away from germs and sickness and hospitals. I want my babies to have an opportunity to live a normal life. I want to stop having to have my dd10 strip and get right into the shower right after school, following a designated path so as not to contaminate her siblings. I want her to feel normal, to be able to play with friends and get time with her mommy. I'm so overwhelmed and stressed and I just keep questioning how much longer I'll be able to do this. I feel broken and desperate and I have no where to turn :'-(

I'm sorry. I just had to get that out.

Posted by Anonymous on Feb. 5, 2014 at 9:27 PM
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Replies (1-10):
Anonymous
by Anonymous 1 - Original Poster on Feb. 5, 2014 at 9:50 PM

bump

Anonymous
by Anonymous 2 on Feb. 5, 2014 at 10:00 PM
1 mom liked this
Wow. To the actual question, I feel like running away a lot... that's actually my biggest fear is that I'll run away, just like how my mom did.. and keep coming back and going, just like her

Couldn't imagine dealing with all that. I'm sorry momma
Anonymous
by Anonymous 1 - Original Poster on Feb. 5, 2014 at 10:04 PM

DO you have coping mechanisms? Things you do to make you stay put?

Quoting Anonymous: Wow. To the actual question, I feel like running away a lot... that's actually my biggest fear is that I'll run away, just like how my mom did.. and keep coming back and going, just like her

Couldn't imagine dealing with all that. I'm sorry momma


Anonymous
by Anonymous 1 - Original Poster on Feb. 5, 2014 at 10:09 PM

Bump!

Anonymous
by Anonymous 3 on Feb. 5, 2014 at 10:09 PM
2 moms liked this
You should try counselling. If this is genetic, why did you keep having children?
MrsDavidB25
by Stacey on Feb. 5, 2014 at 10:10 PM
5 moms liked this

 I am trying really hard to understand why you continue to have children when they have such problems. really hard.

Anonymous
by Anonymous 1 - Original Poster on Feb. 5, 2014 at 10:11 PM

It has never proven to be genetic. I thought I was done after my older 3 but, well accidents happen and I love my younger 2. I don't regret them at all. I just wish they had an opportunity for a better life.

Quoting Anonymous: You should try counselling. If this is genetic, why did you keep having children?


Anonymous
by Anonymous 2 on Feb. 5, 2014 at 10:12 PM
Not really. It seems to get harder and harder every year. Only thing really stopping me is the fact that I truly hate my mom, and one of the core reasons was bc she left us kids. I don't want ds to hate me like that or to not have a relationship with me.

What does your dh do? Could you guys hire a nurse or something? At least once a week so Uu can spend time with the other kids, outside


Quoting Anonymous:

DO you have coping mechanisms? Things you do to make you stay put?

Quoting Anonymous: Wow. To the actual question, I feel like running away a lot... that's actually my biggest fear is that I'll run away, just like how my mom did.. and keep coming back and going, just like her



Couldn't imagine dealing with all that. I'm sorry momma


kissesxoxo8882
by on Feb. 5, 2014 at 10:12 PM
1 mom liked this

 Not to be mean but why did you keep having kids when you already had sick ones. ( I don't mean to be rude just asking)

Anonymous
by Anonymous 1 - Original Poster on Feb. 5, 2014 at 10:14 PM

I gave birth to my 6 year old before my 8 year old was diagnosed. My younger 2 are fraternal b/g twins. They were conceived on depo. My girl is super healthy...she's like an ox. My boy is not as lucky. To be honest, After my 3 older children I didn't want anymore. When my twins happened, there was nothing I could do about it and I don't regret them. I love them with all my heart and I know they were given to me because a higher power believes I can handle it. I'm just having a hard time today.

Quoting MrsDavidB25:

 I am trying really hard to understand why you continue to have children when they have such problems. really hard.


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