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Jadenmariewilson

647d

For those who need it: TW: Long post, Hospital talk, Religious talk, surgery mentions, and coming out. I apologize if I leave anything out. This is hard for me write, I'm a young parent to a disabled child. The syndrome is very rare, I love her very much and that will never change. My own family doesn't understand or get what I'm going through, there have been really hurtful things said by my own family, more specifically my mother and her side of the family. When my daughter was born into the world, I didn't even get a chance to hold her, because she was taken away from us and put into the NICU. I suffered greatly, I blamed myself for her being born with a syndrome. I can't explain why, other than being being told by a pastor that disabled children are born that way because it was mostly out of wedlock. Even when my family asked to please have my daughter in their prayers, the pastor looked at me and told me, she's disabled because I had sex out of wedlock. Since then, I left that religion and I won't be joining any other ones. My relationship with my family is rocky now, with the information about my daughter being disabled was out, I had family member going, "I'm sorry" I don't know what they're apologizing for. My mom in specific went around telling people she'd be a mom again, which left a sour taste in my fiance's and my mouth. She's also said some pretty insensitive things, such as "when I asked for a baby that never grew up, this isn't what I meant". Who says that about their grandchild? Not to mention, with my daughters syndrome comes potential autism, and I told my mom, "If she has autism, you need to ask to touch her. if you want a hug, ask." and she straight up said "I'm not going to ask to hug my granddaughter" I responded as I should have "The fuck you are, if you're going to be insensitive towards my daughter's condition, then you aren't going to a grandmother to her." I said that and I left, I was done with these insensitive comments, she didn't respect me about my name change, nor about me coming out, nor about me wanting to use they/them. She didn't respect me. But back to what I talking about. My daughter was in the NICU for 6 months, I was suffering with postpartum depression for 6 months, I was pumping milk for her for 4 months, before they told me that she wasn't receiving any of my milk. I broke down completely, I was devastated. My mini fridge at my parents house, the freezer is still packed full of my frozen breast milk for her. I couldn't bring myself to take my fridge with me yet, so in my room at my parents house is where it will remain for now. My daughter doesn't eat orally, she has a g-tube. One of the most horrible things to hear was the she "retarded", she'll have a mental delay. I've had countless nights crying and blaming myself. The guilt of her being in the hospital, having several surgeries done to her while my fiance and I were in the waiting room, waiting anxiously for her to be done. Seeing her on the ventilator torn both of our hearts. It was hard to see her that way, we waited to be out of her room and down the hallway before either of us broke down. Our baby girl is home now. She just turned 15 months. She's doing so well and she's health, with alot of appointments a head. She's a survivor, she's strong. But guilt eats away at me when I'm working with her, sometimes she needs to be pushed, my fiance doesn't like when she's pushed because she's prone to get upset rather easily. I feel guilty when I push her too much and she does cry, I'm working on getting her crawl and balance her weight on her hips, I get so frustrated and upset because she constantly extents or throws herself back, I get frustrated and upset with myself, I blame myself that she won't progress properly.

Top reply
    • Marjo

      384d

      My third child was born prematurely, put on a vent and given a horrible prognosis! Today he has a super job, home, wife and 3 children. Every child is different so keep your ears open for valid kindly suggestions from others. Your family is grieving a perfect child just as you are! Nothing you did created your daughter’s disabilities, although it could have a genetic link that was inherited…. All children can become over stimulated through sound, movement, touch! You know what your daughters limits are. Take the lead and explain your child’s sensitivity! Be patient and teach others close to you how to relate to your daughter. Maybe she loves Peek a Bo, or funny faces, a favorite toy . Children learn through modeling your behavior. Baths are a good time to relax and sing songs while splashing the water. After bath try an entire body massage with unscented baby lotion. This gentle massage in one direction ( towards feet) should help with her skin sensitivity and kinesthetic feel ( feeling where all her body parts are in space). This type of massage can help her with learning how to stand and walk. All my children started side stepping around an Ottoman; yes they fall down, just watch their head if she arches back. When she throws a fit, it helps to not fed into her behavior. Attempt to ignore behaviors u don’t like and catch her in the desired behavior! Attention seeking can be good, & bad. Take a deep breath and start feeling better, your daughter will be all that she can be and you will celebrate all her efforts! Enjoy your child!

    • Marjo

      384d

      My third child was born prematurely, put on a vent and given a horrible prognosis! Today he has a super job, home, wife and 3 children. Every child is different so keep your ears open for valid kindly suggestions from others. Your family is grieving a perfect child just as you are! Nothing you did created your daughter’s disabilities, although it could have a genetic link that was inherited…. All children can become over stimulated through sound, movement, touch! You know what your daughters limits are. Take the lead and explain your child’s sensitivity! Be patient and teach others close to you how to relate to your daughter. Maybe she loves Peek a Bo, or funny faces, a favorite toy . Children learn through modeling your behavior. Baths are a good time to relax and sing songs while splashing the water. After bath try an entire body massage with unscented baby lotion. This gentle massage in one direction ( towards feet) should help with her skin sensitivity and kinesthetic feel ( feeling where all her body parts are in space). This type of massage can help her with learning how to stand and walk. All my children started side stepping around an Ottoman; yes they fall down, just watch their head if she arches back. When she throws a fit, it helps to not fed into her behavior. Attempt to ignore behaviors u don’t like and catch her in the desired behavior! Attention seeking can be good, & bad. Take a deep breath and start feeling better, your daughter will be all that she can be and you will celebrate all her efforts! Enjoy your child!

    • Sunshineseeker90

      393d

      Look how far your daughter has come with your love and support! Congratulations on your blessing.

    • Sunshineseeker90

      393d

      Can I ask if you live in the U.S.? I've been a Christian my whole life, it is hard to wrap my head around that a pastor or Christian would believe or say that. (I believe you). And I'm so sorry. People can be terrible and not smart. Keep it up Mom! You are doing great! Tell that negative guilt self talk to shut up. You are amazing. 👏

    • AnimalBoy

      394d

      Your mother's lack of respect for you and your daughters consent is concerning, but none of it is your fault. Being born from wedlock especially is certainly not the cause of any disability at all, that's just prejudiced bullshit. Sometimes children are born disabled and the only thing you can do about it is give them the space to develop at their own pace and use the tools available to you like PT and other therapies to help them get as far as they can and be comfortable, it's more than possible for her to live a happy life even if she's had a rocky start and it doesn't look exactly the same as everyone else's life.

    • Treds

      394d

      This is so sad to read. Wishing your baby daughter well. Keep your child away from toxic people that look down on you both. You are doing your best for your child and nothing about your child's condition it your fault. If any of your critical family or that pastor had to walk a mile in your shoes they would know just how hard it is for you. Wishing you all the best x

    • Karlie2000

      394d

      That pastor was totally out of line, and completely misrepresented the Christian faith. Children are not born with disabilities because of their parents' sin. I'm sorry you've been rejected by people who should be supporting you, especially with the extra demands of parenting a child with special needs. I pray that you'll feel whole again, and that through the loving support of her family, your daughter can have a beautiful, loving existence. A note about pushing her: I would trust your judgment on it, but remember not to let others pressure you into making her hit baby "milestones" before she and you are ready. Some babies develop slower, and that's okay. It gives you longer to savor the time that usually flies by for mothers.

    • Mop

      645d

      None of this is your fault at all! I wish you can let go of your guilt in time. That pastor is a piece of crud, I didnt even know some religions believed that sort of thing. I have met a lot of people who say "I'm sorry" as a form of... I dont really know how to put it. "I feel bad for you." Or "that's really sad." The German equivalent for I'm sorry translates literally to "I feel your pain." If I were you I'd keep your daughter far away from your mom. She sounds extremely ableist and will put her in harm's way mentally and emotionally. Bragging about being a mom again (uh, no, you're the mom) being glad that she's a permanent child, and having no respects for her boundaries makes it clear she is very self-absorbed in this matter. It puts up a lot of narccicistic personality disorder parenting abuse flags, honestly. And if she cant even respect your name and pronouns, what will that be like for your daughter? You want what's best for your little girl. I know a lot of parents who would simply see this as a burden and complain. You're an amazing mother, please recognize that. She's going to have the best life she could possibly have despite the cards nature have handed her, thanks to you.

    • Weezy

      645d

      None of it's your fault sometimes the world throws curve balls but it's our decision to catch them if you get what I mean your doing the best you can and that counts for something right all you can do is one day at a time sending you and yours love

    • AMWes

      645d

      Sending you and your daughter love <3 it's not a bad thing to cut off family members for saying shitty things about you or your children, but it takes a lot of strength and I'm proud of you for putting your child first

    • Lani_Girl

      646d

      😥😥😥😥😥😥🙏🙏🙏🙏🙏

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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