Please don’t leave them to navigate the battlefield alone.
It can be so very hard because you may become terrified of saying something wrong; however, not saying anything is just as heartbreaking.
Where do you start?
You may also be feeling unsure, saddened, or burdened for your friend, loved one, sister, daughter, granddaughter, niece, nephew, cousin.
You start by reaching out.
The parents who have just learned of the diagnosis of their precious baby may not reach back. They may not even respond, but don’t stop trying. They hear your voice mails, they read your texts, and they see your emails and cards. If they don’t respond right away, let it slide, they may be too overwhelmed with their own feelings to be able to speak, and that should be okay.
Trust me though, they keep track, even subconsciously, of who is reaching out to them, and they feel the love. They also feel rejected by those who don’t make an effort to reach out to them.
More importantly than ever, they pay attention to who seems welcoming to the thought of their new little one. This is not even a thought with any other baby they may have already had, they know that a new baby is always accepted with open arms, smiles and everyone vying for the chance to hold and cuddle the new babe.
But, they worry about you feeling and reacting the same towards their new baby. It may seem upsurd, but, their feelings in this area are ridiculously magnified and they notice if you don’t oogle over, coo at, and immediately ask to hold the new baby. It won’t make sense to the rest of the world but to that mom or dad, everything they are feeling is intensely out of proportion.
So what is it that you shouldn’t say?
Don’t say, “I’m sorry.”
What you mean is that you are sorry that your loved one is dealing with this, you wish you could take it all away, you wish they were not walking an uncharted path…but that isn’t what a sleep deprived, emotionally unstable, hormonally unbalanced new mom and loving dad may hear.
What they hear is…“I’m sorry you had this baby.” That feels like a knife in the gut.
It feels that way because they already feel guilty for crying so much, for mourning the baby they thought they were having, the life they were looking forward to. It feels that way because they don’t want pity, they may well be feeling enough pity for themselves and they don’t want anyone else to pity or feel sorry for them.
Don’t say, “But, he/she looks so normal.”
What you mean is that this baby is just as cute as any other, so precious and adorable. You mean sincerely that the new baby may look like every other baby and you truly may not notice the marked characteristics of Down Syndrome.
What they hear is…”Are you sure?” They have already fought the battle of denial, they may still be fighting it, and it feels to them like they have to explain, all over again, everything that is “wrong” with their child so you can see it to.
Don’t say, “At least it’s not…”
What you mean is that it really could be so much worse, look at the bright side of things. Your baby is here, and you can love him/her. Your baby could have….(insert whatever other issue you can think of). I have to say that for me, this was one of my personal coping mechanisms. If you said this to me, it’s okay because I said it to myself, over and over. However, I have spoken with so many other new moms who really have a hard time with this phrase so I am including it because, as usual, what they hear is something entirely different.
What they hear is…”Quit feeling sorry for yourself and buck up.” They already know that it could be so much worse, they have thought that themselves, but then they feel guilty for thinking that this is bad in the first place, they feel guilty for comparing their child to others who have more significant disabilities, they go back, in a circle of emotions, to feeling bad that they are so sad in the first place. It is a vicious cycle.
Don’t say , “Downs kids are just so special…”
What you mean is you want to be an encouragement, you want your loved one to know that it is going to be okay because you have heard of, or you know of someone with, Down Syndrome and they are great.
What they hear is…”Your baby is a Downs baby.” There is one thing that you will learn quickly, most parents prefer that their child not be referred to as a “Downs baby.” It will seem impossibly silly and insignificant to everyone else, but to a parent, most of us prefer that our baby be referred to as a “baby WITH Down Syndrome.” Why does this matter at all? Because we don’t want them defined as a disorder or a defect. We want them defined as a little person who, oh by the way, has Down Syndrome. It is a very little nuance, most of us parents will let it slide, but we prefer not to have our child defined as a Downs child.
Like I said, it is a minefield, and it is oh so complicated, but emotions are like that, they are not simple.
If there are things you should not say, what exactly should you say then?
You should say, “I love you, let me know if there is anything I can help with.”
You should say, “I am so proud of you and your new little one.”
You should say, “He/She is just beautiful, precious, and loved.”
You should say, “I can’t wait to meet him/her.”
You should say, “I just love his/her cute little (insert characteristic)”
You should say, “Send me pictures; he/she is just so cute!”
You should say, “Let me bring over a meal, a gift, etc.”
You should reach out when they don’t reach back. You should call when they don’t answer. You should be particularly in tune to being as excited about this baby (maybe even more so) than any other. You should love the parents unconditionally. You should not expect them to be emotionally rational at first.
You should be there.