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missing lower left arm

(7 posts)

Total votes:

  1. tr@cey
    Member

    my little boy jay is nearly 4 months old, he is a beautifull thriving little lad who has a big sister and brother who love him dearly, we did not know about jays arm untill after birth is was a great shock to us all but mostly me as i had 11 scans during my pregnancy as i had problems and they checked his growth, bones and other things.
    I still do not understand how they could miss this as looking back at my scans its very clear there is nothing below the elbow joint and even my doctor found it hard to believe that had not noticed.
    I am still trying to come to terms with everything i would never have changed jay but i find it hard how people stare and make comments under there breath i dont want him growing up thinking he is not accepted.
    We have not been told what caused jay's arm to be missing other than it being refered to as a 'gentic blip' i feel so let down by the hospitals and doctors we have no answers and no one can seem to tell me what the future holds for my precious boy i very lonely having no one to talk to and ask for advice.
    I know no one can tell me life will be easy but just to know he will do ok and be happy.

    Posted 3 years ago #

  2. blueberry
    Member

    He's going to do fine :) It's so hard to see it right now, but as he grows you're going see how easy it actually is.

    I took my daughter to Shriners in Lexington. They were great with her and are very knowledgable. They are free, donations only.

    My daughter has Symbrachydactyly, just a fluke like what happened to your son. She's 3 now, and I have to say i hardly ever think about it. She's a very normal 3 year old. Very well into the terrible 3's!

    It's nice to meet you! Hope to see you around here more often!

    Posted 3 years ago #

  3. tr@cey
    Member

    Thank you so much for your words of encouragements its so nice to speak to people who have been through the same and have had come out the other side shining.
    Its great to meet you both

    Posted 3 years ago #

  4. KarenO
    Member

    Tracey,
    Katie had such a great post, that I can't really add anything. But just wanted to say that your son will be more than just okay--he'll be great. Some strangers might stare and be ignorant enough to make comments, but most will not. Kids will probably ask questions, but usually of genuine interest or innocent curiosity. I always answered them as matter of factly as possible and let them know that it didn't hurt my daughter to be missing fingers and that she could do everything they could do. When he starts making friends (or playing with his siblings' friends) they won't really care about his missing arm/hand.

    My daughter has amazed us at what she can do without all her fingers (she has symbrachydcatyly). Not knowing was a shock to us also, medicine and science are not perfect, but you eventually get to a point where it just seems normal. After my son was born, it seemed strange to me that he had all 10 fingers.

    Karen

    Posted 3 years ago #

  5. tr@cey
    Member

    thank you karen

    Posted 3 years ago #

  6. Jess1ca
    Member

    Hi Tracey. I too have a son who was born with the same condition, and like you I had numerous ultrasounds. We were happy for a healthy baby, but also surprised to learn minutes after delivery that on his left side his arm did not extent much further than his elbow. But, we'd only prayed for a healthy baby so our prayers were answered and we had comfort in that. Someone once told us that it takes special parents to raise my son and God favored us to give us such a blessing. And I believe that. Everyone can't do the job, can't encourage, and give the love and share the disappointments or fustrations like all of us will face..and to do it with pride and a lesson of perservance. This didn't just happen to you, your family was choosen and that to me says you are one special family.

    We have been to Shriners and have found the center to not only give us information but there is a certain level of comfort and direction just from our annual trips. It is okay for you to feel emotional at times, so if you find yourself upset, you are normal and it's okay. Just know that you are the same Mother that helps your other children and it's that motherly love to help little Jay in the same way.

    As far as answering every person, I do not. My son turned 5 just days ago, and I've given myself (and him) permission to not feel obligated to answer everyone's inquiring questions. At 2 my son started to ask why everyone looked at him, he started to be conscience of people's stares and discussion "about him" and not to him. Though my husband and I stopped "seeing it" after we realized how early that he was JUST FINE (and alllll boy-smile), we still have family members that have seen him at least 5 days a week for most of his life and they still see him a the family member with no hand. I know they love him very much, but honestly it does bother me, especially when it's family. I've realized I need to be realistic, for no one else can love any of my children the way we do. I can not expect them to see HIM as God's pure perfection in the same way that I do. Once I had a stranger stop and apologize as I walked through Walmart. I told her there was no need, so when she insisted, I told her simply that she wasn't God, so no apology was needed. I don't mean to scare you, but I get quite a lot of what I consider STUPID remarks and meaningless stories from strangers. But as my son has aged, we do get less of them.

    Generally, my son tells people that it's how God made him and that another person needed his hand more than he did so God kept his hand in heaven for someone else. He has at time expressed irritation. I have let him know not to bottle it inside or feel obligated to answer someone. My example was that if someone accidently steps on your foot, they may not know it or that it hurt you until you say ouch. Sometimes people don't realize that their inquiry may hurt you. I've read a few posts from others with missing/difference in limbs and they discussed how sad they were inside and no one knew it. They discussed what they really wanted to say, but never did. So I decided to let my son know he has a voice. He doesn't have to satisfy someone's curiosity. To me, it is not rude if he tells someone that he doesn't want to answer them. I just think he has to find his voice and as long as it isn't w/anger I'll support how he feels. We are an open family and we discuss his hand with ease and he speaks freely about how he feels and from time to time I bring it up to give him the opportunity to ask questions or to see if there is anything he needs that I have overlooked (ie. in preschool)

    I hope I didn't give you too much too soon, but it's just to let you know that you will find your voice and you will help your precious little Jay and his siblings with theirs.

    Please know that you are not alone at all and I'm glad to know that I am not either. It has been hard to find others that are currently going through the same things. My son has also expressed wanting to meet other kids too. At Shriners earlier this year, he was able to meet a couple of kids and hear their stories (their losses were from tragedies). I'm so glad my husband found your post today.

    Anytime (taysimp@att.net). If you like we can talk personally, email and we can exchange #s if you like.

    @Katie, the guitar...so happy to hear that, my son is interested in the guitar and I'm a Mom that wants him to do everything he wants to do. I will definitely check out your son's page. THANKS SO MUCH FOR SHARING.

    Posted 3 years ago #

  7. tr@cey
    Member

    Thank you jessica i have emailed you :-)

    Posted 3 years ago #

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