What I Wish I Knew

 

When I found out Mom was pregnant with a baby who would have Down syndrome, I confess.  I was scared.  I didn’t know what it would mean for his life or for ours.  Well, recently World Down Syndrome Day was celebrated, and I saw this sweet post by  Amy Julia Becker, who lists five things she wishes she had known when she learned that her daughter was born with Down syndrome.  Here are two that jumped out at me:

You think Down syndrome means tragedy, and people will compare your experience to that of losing a child in a car accident or to cancer or some other horrible fate. And though you will experience a sense of loss, you will realize eventually that you have lost a hypothetical child, and that the child right in front of you, this child, with her sparkling eyes and crooked teeth and warm soft hand, this child is a blessing. In time, because of the privilege of knowing and loving her, you will realize that your grief has turned to gratitude and that your worry has turned to wonder.

and

You think Down syndrome means isolation, but you will discover that it brings a world of connections. It’s not only that you will now feel a bond with other parents of children with Down syndrome throughout the country and around the globe. It’s that having a child who looks and acts somewhat different from what you expected, a child who you see as beautiful and funny and kind and smart and brave, will help you to recognize that same beauty in everyone else. You will think your world has become smaller, when it has only begun to grow.

Read the other three here.

I can say Trig is one of the best things that has ever happened to our family!  I love him so much!! He shows life in a different light, he’s just a love bug. Now that he’s been in preschool, I can tell he’s learning so much.  I love seeing him grow up. It’s like everything he does is so big now! We’re so proud of him for everything he accomplishes. He just lights up our life. I love you, brother!

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  • MiddleRoader

    I won’t wade into the “when did Bristol know” debate, b/c I haven’t read Palin’s book, but please, any perspective parents of special needs kids, tell your kids in advance. They, like you, need time to prepare and learn. Plus, Palin’s own admission that she couldn’t talk about it before Trig’s birth promotes a feeling of shame. In fact, even if genetic tests turn out negative (or you choose not to have them), parents should discuss with each other and family members the possibility, however remote, that the baby could have problems, and how they would deal with that. I work with special needs kids, and it always tugs at my heart at little when friends of mine who are pregnant say they don’t care what sex the baby is, “as long as it’s healthy.” I alway want (but refrain) to say, “What if it’s not?” I realize I come at this from a different perspective and the vast majority of kids are perfectly normal, but just like we make contingency plans for floods, fire, accidents, terrorist attacks, etc., parents-to-be need to spend at least a little time on how they would deal with a baby with special needs.

  • melory

    Wow!

    I thought you were different – I don’t even know where to start – what you are insinuating I find shameful. Are you the parent of a special needs child? For a person that has no problem with babies being murdered in the womb you have the audacity to criticize the parents and family of special needs children.

    Forgive me for being so rude – I have to recover from what I just read – that was a low-blow – I hope Sarah and her family or little Trig never get to read what you wrote.

    • MiddleRoader

      (Sorry for the length of this comment, but I have a lot to say.) I am not a fan of Palin’s politics, but I have never criticized her child-rearing or her treatment of Trig. I tried to make my comment generic and not specific to the Palins. Perhaps it was a bit judgmental of me b/c every family is different and if Palin wasn’t ready to share the info with her kids, than that’s her choice. It worked out well for them; they have all embraced Trig and he’s a happy and loved little boy. But generally speaking, if you know your child will have special needs, it’s a good idea to prepare the siblings. Here are 2 examples supporting that view:
      “In many cases, medical science is capable of finding out if a child is going to be born with special needs. If this is an option, then this is a good opportunity to talk to children and tell them his or her new brother or sister will be in need of special care. Tell the children what will be wrong with his or her new sibling; even young children are able to understand if explained properly.” (http://www.helium.com/items/1376648-how-to-prepare-your-kids-for-life-with-a-special-needs-sibling)
      “Prepare other siblings for the arrival of their special sister or brother. Explain what Down Syndrome is, and let them know that although this little person is special, that they should treat him/her the same way they treat each other.” (http://voices.yahoo.com/preparing-baby-down-syndrome-tips-parents-1987142.html?cat=25)
      I guess the 2nd part of my comment did sound a little harsh. But I was basically saying what Todd Palin said when he learned of the diagnosis: “We shouldn’t be asking, ‘Why us?’ We should be saying, ‘Well, why not us?’” When you get pregnant, it should at least cross your mind that there could be a problem, and you should give at least a passing thought to that possibility.
      And to answer your question, didn’t really want to share this, but in the light of my “feeling of shame” comment, I’d be hypocritical not to. No, I do not have any special needs children; I was one. This was in the 1950’s, so that term wasn’t even coined yet: I was just “crippled,” and my parents were completely taken by surprise. To their credit, my parents rose to the occasion. My dad switched to night shift so he could visit me in the hospital. My mother never gave up on me, and advocated for me, and made me do painful physical therapies every day. Somehow, they scraped together the money for my medical care. (For the record, after many corrective surgeries, casts, etc., I’m pretty normal physically now.) My condition was not genetic, so there was no way they could have known in advance, which is why I say every parent-to-be should consider this possibility. It can happen to anyone.

    • MiddleRoader

      I am not a fan of Palin’s politics, but I have never criticized her child-rearing or her treatment of Trig. I tried to make my comment generic and not specific to the Palins. Perhaps it was a bit judgmental of me b/c every family is different and if Palin wasn’t ready to share the info with her kids, than that’s her choice. It worked out well for them; they have all embraced Trig and he’s a happy and loved little boy. But generally speaking, if you know your child will have special needs, it’s a good idea to prepare the siblings. Here are 2 examples supporting that view:
      “In many cases, medical science is capable of finding out if a child is going to be born with special needs. If this is an option, then this is a good opportunity to talk to children and tell them his or her new brother or sister will be in need of special care. Tell the children what will be wrong with his or her new sibling; even young children are able to understand if explained properly.” (http://www.helium.com/items/1376648-how-to-prepare-your-kids-for-life-with-a-special-needs-sibling)

      “Prepare other siblings for the arrival of their special sister or brother. Explain what Down Syndrome is, and let them know that although this little person is special, that they should treat him/her the same way they treat each other.” (http://voices.yahoo.com/preparing-baby-down-syndrome-tips-parents-1987142.html?cat=25)

      I guess the 2nd part of my comment did sound a little harsh. But I was basically saying what Todd Palin said when he learned of the diagnosis: “We shouldn’t be asking, ‘Why us?’ We should be saying, ‘Well, why not us?’” When you get pregnant, it should at least cross your mind that there could be a problem, and you should give at least a passing thought to that possibility.
      And to answer your question, didn’t really want to share this, but in the light of my “feeling of shame” comment, I’d be hypocritical not to. No, I do not have any special needs children; I was one. This was in the 1950’s, so that term wasn’t even coined yet: I was just “crippled,” and my parents were completely taken by surprise. To their credit, my parents rose to the occasion. My dad switched to night shift so he could visit me in the hospital. My mother never gave up on me, advocated for me, and made me do painful physical therapies every day. (For the record, after many corrective surgeries, casts, etc., I’m pretty normal physically now.) My condition was not genetic, so there was no way they could have known in advance, which is why I say every parent-to-be should consider this possibility.

    • MiddleRoader

      I keep trying to respond to your comment, Melory, but somehow it gets lost in the “awaiting moderation” queue. I meant absolutely no disrespect to the Palin family. I would have no problem with Sarah or Trig reading what I wrote. Although I disagree with Sarah’s politics, I have NEVER criticized her child-rearing or her treatment of Trig. I may have been a bit judgmental; every family is different. But in general, if the mother has knowledge in advance, it’s better to tell and prepare family members. Look at the title of Bristol’s post: “What I wish I knew”. She says she was scared. Maybe if, before Trig was born, she had met some kids with DS and read articles like she reference, she would have been less scared. I’m simply saying that I wish everyone would know the facts and myths about DS and other disabilities before they give birth. Everyone should know the “red flags” of autism, because early detection and intervention is so important. People shouldn’t just assume it won’t happen to them. Yes, if it does, they will probably find a way to deal with it; a mother’s love surpasses many odds. But, as they say, knowledge is power. Happy Easter!

      • TrueBlue

        I thought your point was a good one, MiddleRoader. I think, as someone who works with special needs children, you would have an opportunity to see firsthand how brave families deal with the challenges that come with raising special needs babies. You surely have some insight that would lead you to believe that preparation can be a good thing. I’d bet that if Mrs. Palin could go back in time, she would have told every one of her children that Trig was a DS baby before his birth, especially now that she knows how easy he is to love and what a beautiful little boy he is despite his challenges. It seems that maybe fear of the unknown, understandably, was what kept her from sharing the facts of Trig’s condition.

  • Thotocv

    Wow, so confronted by a clear contradiction here Melory refuses to acknowledge a Palin lie….. And instead just tries to distract.

    • melory

      Did they assign you here to represent what-difference-does-it-make liberals and proudly show off their hypocrisy and hate? You are doing great!

      I answered your questions, it is your turn now!

      Waiting!

    • melory

      “Palin lie..”
      Poor thing, you are stuck with the talking points until they take you in and reprogram you.

      So we will just ignore you, it is no fun talking to a mind-numbed robot.

  • Thotocv

    Too funny Melory. There really is no way to get around the contradiction here is there?? Sarah Palin wrote in her book, told People Magazine and said in the Barbara Walters interview that she didn’t tell her kids that Trig would be born with DS. And yet now hereis the claim that Bristol knew beforehand.

    Yes, best for you to ignore that! Too funny.

    • melory

      LOL! You’re proving my point, mind-numbed robot! You noticed how everybody have ignored you, I am the only one that felt sorry for you!

  • melory

    “The tomb is empty!
    He lives y’all!!
    Can I get a witness that He lives!! We’ve got to tell everybody, He lives!!!”
    Nicole C Mullen (My Redeemer lives!)

  • Thotocv

    I will give Sarah Palin credit for knowing how to pick an easy target!

  • Thotocv

    Melory, you crack me up. The others at least recognized that there is a contradiction and didnt try to argue it like you did.

    • melory

      The others recognized that I have answered your questions, and that it is your turn now. They have also recognized that you are a hypocrite and a robot who is stuck with the talking points.

  • melory

    MiddleRoader I understand what you are trying to say and I appreciate your attitude.

    I hope you will also understand what I am saying – although it may sound harsh:

    a) I find it offensive that pro-abortion people like you and True-blue think you can advise on the issue of DS children. You do not even believe that these children have a right to be born or that all human life is equal- so spare us your wisdom.

    b) You chiding Trig’s mom and your lecture directed at her was uncalled for and has no place here at his sister’s website. You and Tru-blu are the only ones who felt the need to do that.

    c)I was wondering, do you also judge the women who abort their DS babies? Do you criticize the decisions they make in dealing with the news of a DS baby? Do you lecture them about the right way to go about their life as it relates to these issues?

    d) Would you go on their website and judge them knowing their children and the world will read that? Or do you respect their right to make their own choices and call on everybody to mind their own business? Can the same respect be shown to Sarah?

    e) You have a right to your opinion, but keep them to yourself out of respect for Trig and his family, at least here at Bristol’s blog.

    f) I believe your post was meant to hurt and accuse Trig’s mom – that is what liberals try to do when they come here.

    g) I am not surprised that you have no problem with Trig reading your initial post. Liberals are that self-righteous, insensitive and busy-body.

    h) Parents and families of special needs children were wise and brave enough and had the integrity to allow these children their God-given right to be born into this world – when they do need help – pro-abortionists are the least qualified to help.

    I know in your follow-up posts you have already addressed some of my concerns, I just thought what I wrote may help you understand why I found your post on Saturday so hurtful and offensive.

    In the end, I hope you understand that I have nothing against you personally, you are one of the few liberals I respect.

    My last post in the matter.

    • TrueBlue

      Melory, although you directed your comment to MiddleRoader, you mentioned me, so here’s my response:

      MiddleRoader stated that she was a special-needs child. I thought it was an incredibly poignant and courageous disclosure. Since she’s actually lived through an experience similar to that of the Palins, MiddleRoader’s insight has merit.

      On the other hand, you have no idea who I am, what I’ve lived through, or what I’m qualified to comment on. But I’m full of Christ’s light today (still basking in Resurrection Day’s afterglow!), so I will thank you for harsh, judgmental comment; it affords me the opportunity to say this to you and in doing so, honor Him: Be well today and everyday, Melory. I wish for you nothing but the best and brightest this day has to offer. Go in peace…

      • melory

        Oh, cry me a river. I was referring to your pro-abortion views. Because of that I am of the opinion that you have no right to criticize or advise their parents and families.

        They do not have a RIGHT TO LIFE is what pro-abortion liberals believe about special needs children, most of these children would have been murdered in the womb if it were up to people like you, so pardon me for not thinking you have their best interest at heart.

        I wish for you to be delivered from the ideology of death that is liberalism and thank you for your well wishes, you too go in peace.

        • TrueBlue

          Cry you a river? Oh, Melory, DO NOT get it twisted: no tears here. No way, not for you. Not for bipolar, angry, name-calling, hater you. And what’s more, I have NEVER discussed my views on abortion with you. I didn’t mention it on this thread, either. You are stuck on one speed, so everything you write circles back to abortion. Bristol posts about snowmobiles, you post about abortion. Bristol posts a gorgeous photo of the Alaska sky, you post about abortion. Bristol posts about Trig’s birth, you circle back to abortion. You spout Scripture and ask liberals for forgiveness in one post, and then you’re cursing and foaming at the mouth and gnashing your teeth and hating liberals of all stripes in the next. Cry you a river? No way. I’m laughing right now.

          • melory

            I am sorry you are so upset! I forgive you for the false accusations against me. I never cursed or hated on you or anyone. Most of the stuff liberals believe are so offensive that it does sound like hating when you are just telling the truth.

            I am sorry the topic of abortion is so offensive to you. That is why we should root out the evil that is abortion then we never have to mention that word again!

            Take care.

          • TrueBlue

            Your reading comprehension is as faulty as your self-righteousness. I’m not upset, Melory. And I don’t seek your “forgiveness.” Best.

    • MiddleRoader

      Thank-you for the respect, Melory (and for the support, True Blue). (And sorry for the multiple comments; I had computer problems.) My views on abortion are an entirely separate issue; we’ve already discussed that, so I won’t rehash it here. (However, I do think that knowing more about certain birth defects and their treatment may reduce the number of abortions of children with genetic disabilities.) I repeat that I meant no disrespect to the Palins. It was just a suggestion, based on my personal experiences and (limited) research on the subject, to prospective parents. I admit that it came off a little judgmental and I apologize for that. I spent some 30 years in a totally unrelated job field, before embarking “what I really want to do when I grow up” so I am not an expert (yet!) in special needs research. Accept or reject my suggestion, but don’t take it as an insult to any family of an exceptional child. Lastly, you say I have a right to my opinion, but keep it to myself on this blog. Well, then, what’s the use of having an opinion? I assumed that based on the nature of Bristol’s post, parents or parents-to-be would be reading it, and I want to share my thoughts with them.

      • melory

        Others also expressed their opinion without chiding and judging Trig’s mom.

        For the record: Trig’s mom only promotes love, acceptance, support and celebration of special needs children. You owe her an apology. Just my opinion.

        Liberals scorned her for taking her special needs infant with her on trips and public events as she would any other of her children. She’s doomed when she does, and doomed when she doesn’t! What I have to say to liberals is Keep Your Hands off Trigs mom!

    • Judy Willox

      Here, here Melory, I salute what you say! “Keep your hands off of Trig’s Mom.” The whole Palin family are beautiful people from what I have seen and observed. Having met Sarah, I found her to be a breath of fresh air and a class act! Ans she is a GOOD Mother!

  • Thotocv

    No Melory, nice try, but you haven’t answered the question how Bristol could have known Trig would be born with DS when Sarah herself said publicly on at least three occasions that they didn’t tell the children before he was born.

    There really is no answer to the contradiction.

    Here’s what likely has happened: The writer of this blog didnt get the family to review this post before it was made and the contradiction was missed.

  • Thotocv

    Melory, you need to have something clarified. People who are pro choice actually do believe children with DS have a right to life, just as all children do . Similarly, people who are pro choice believe in a pregnant woman’s right to choose birth or abortion. A diagnosis of DS does not change that.

    • melory

      “People who are pro choice actually do believe children with DS have a right to life”

      They have a strange way of showing it, my friend! These children have a right to life until mom decides to take away that right – and soulless liberals, say, yay, go girl, we are behind you all the way!

      I really pray that the Lord will open the eyes of people like you to see the evil of abortion.
      I don’t believe you want babies murdered, but you have been deceived into thinking that it is actually right and cool to support a woman having an abortion – that it shows you are enlightened, not a hater, etc. The Bible says the Lord is the only one that can deliver from deception.

      Some other time, if you are interested, we can talk more about abortion specificly, in previous posts we went into it in detail, I am not in the mood to go through it all in detail again.

      Have a great day!


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