Another email was waiting for me when I got up this morning. Without further ado:
"It's been an emotional ride for me this week. I should probably start by telling you about my husband and his family. He was with me, of course, when the doctor told me the results and he didn't even flinch, all he did was take my hand. He had had an aunt with cerebral palsy who died when he was in his teens and of whom he still speaks with love and affection. He wanted the child no matter what but agreed to leave the decision up to me. His family was equally supportive and there was no difficulty in telling them at all. Most of them seemed genuinely excited about the baby, it was like they didn't hear the 'Down Syndrome' part.
My family has been another story, however, and it has caused me no end of sorrow. My sister in particular has been on at me about the decision to keep the baby. She thinks it is reckless and irresponsible to bring a 'defective child' into the world and then expect 'taxpayers to carry the burden'. She's been angry and adament. My mother has been torn between the two of us wanting to support me but, in her heart, agreeing with my sister. I've tried to explain that I've learned a lot about Down Syndrome and that it doesn't mean what they think it means. But they won't listen. It got so bad that my mother threatened to cancel our Easter celebration tomorrow if my sister and I couldn't agree to leave it alone for the day.
Well, I don't want to leave it alone. I don't want to go and pretend that everything is fine while my sister is sitting there passing judgement on a child that hasn't even been born yet. My husband, ever the peacemaker, says that I should let it go because what my sister think ultimately doesn't matter. He says that my sister and I are always at each other about something, this is just the latest battle ground. That's true but all our squabbles now seem petty, this isn't petty. This is my baby. More than that I don't want her passing her attitudes on to my other children. They don't really understand what the whole fuss is about, they are just pleased at having another brother or sister. For reasons I don't understand they really love their aunt and I'm afraid of the influence she will have on them.
So when I came on to read Chewing the Fat this evening I was wondering if you would have posted my letter to you. I was pleased that you did and then I saw that there were 65 comments. I read them and started to cry. Really cry. I called my husband and he sat here with me and we both cried as we read all the notes of encouragement and congratulations. It took us hours to go through the comments because we kept stopping and talking and hugging each other. All these people from around the world were embracing us, becoming a new family to me. I can't thank you enough for your words of encouragement and for the people who commented on your blog made such a difference to me.
My sister had not swayed my decision to have the child (no I don't know if it is a boy or a girl) but she shook my faith in people. I had it restored this evening. Thankyou."
I have, obviously, editted out the parts of the letter that were to me personally, I can just tell you that I'm going to meet up with Mom and Dad in only a few weeks as I am going to be in their part of the world. I'll keep you updated.
Awesome news that you will be meeting Mum and Dad......sad that her family -the sister in particular-feel the way they do-when my hubbies family found out about our son and the DS, they went home cried, then researched for us,so that by the time we came home from hospital 2 weeks later they had already set up early intervention etc. I hope that this Mum's family embrace her child, as my family have embraced mine ( we have others-they are all embraced too-but you know what I mean).
ReplyDeleteWonderful that this mum can receive support from allot of people she has never met, but are all heartfelt at the same time. Well done Dave and thanks for letting us share this lady's story.
Lisa for Down Under.
New Mom: I understand your feelings. When my twins were born,
ReplyDeleteone with severe disabilities and the other "normal", my family did not exactly embrace both equally. My mother suggested I place one in an institution, she would not hold him and did not want much to do with him. It caused a great strain. We had many rows but nothing changed. My father was the opposite. His arms and heart always open to both. Some people are just not meant to love all and it is their loss. She missed out in developing a great relationship with both her grandchildren, not because we limited access but just because kids know. she knows too, everyone turns to grandad first. Let your feelings known and then drop it, go to easter. Over the years she will be the one that loses out or decides she was wrong. Sounds like your new babe will have lots of love. Congrats.
MDN
Your sister may be a person who requires the actual experience of knowing someone with a disability well to unlearn her prejudices--I hope she does. But I have to say that some people will oppose you in your parenting choices no matter what--if it wasn't this, it would be whether you breastfeed or bottlefeed, how you respond to crying, how you discipline when your child is older, etc. I know it hurts that she's that judgmental and it probably feels representative of other people who will be judgmental, but it's impossible to change stubborn minds with force. :) Sometimes time helps.
ReplyDeleteThe good news is that it's increasingly easier (though still difficult) to be disabled as laws change--educational laws, for example--and as many people become more aware and advocate. And sometimes new laws seem to help change people's minds over time about what's fair, as with racial discrimination and sexism.
I'm so excited that you will be meeting them soon.
ReplyDeleteTo the new Mom~ I am sorry your sister cannot set aside her prejudices and realize this is, first and foremost, a child! Your other children are only going to see their new brother or sister~ a new baby to love and play with.
Thanks for the update Dave!
Dear expecting Mommy and daddy - first of all congratulations! I am so excited for you both! I am Mommy to Marco, almost 4 with Down syndrome. I can assure you that you are about to enter into a pllace that you will be foreve grateful to be. Marco has taught me so much in his short 4 years as he simply moves through his days with sheer determination and complete enjoyment. Have we had trials, sure we have, but I also encounter those with my typically developing child, Ava. I just came from easter services and I hope that I don't offend you by sharing the moral of the story...basically it is to RISE ABOVE. The priest shared a story where he felt that his role in the Mass was invaded by a younger priest who insisted they not say a prayer in Latin. He was upset and went to talk to a firend about it. The advice he received - RISE ABOVE! He, and I, feel this was the best advice he could have received. Like him, I will apply this too so many aspects of his life. So in regards to your sister, I am deeply sorry that she has chosen this path, but I encourage you to RISE ABOVE and things will work out for the best!
ReplyDeleteSharon
Dave, please pass along our family's heartfelt support when you meet Mom and Dad. I wish they could spend time with our family, to get to know Gabriel, and to see that having a child with Down syndrome is okay.
ReplyDeleteAlso, in this life, I've come to accept disappointment in those that are [i]suppose[/i] to "unconditionally" love me. I do hope Mom's sister will rise to the occasion and erase her ignorance to celebrate her new nephew or niece coming into this life. But if she doesn't, there is a large community people waiting with open arms.
As far as Mom and Dad's other children go, I think once their baby brother or sister is born, and life experience accumulates, all will be good. I believe there will be much much joy in this family!
Happy Easter to you!
Dave, Thanks for sharing their letter. I am so glad that you will get to meet them...I wish I could! I would fill their ears with love for my son...and funny stories too : )
ReplyDeleteDear Dave, Thank you once again for just "being there" and appreciating people, all people for who they are, not "what" they are.
ReplyDeleteCongratulations Mom and Dad and I am sorry your sister doesn't seem to be able to see your baby for the miracle he/her is.
Lisa
Dave and Joe -
ReplyDeleteHappy Easter! Thank you for adding so much love and joy to so many people's worlds. I hope today and tomorrow go well -
This brings tears to my eyes! I just don't get people when they act this way. My father did the same thing. I didn't find out about my first child having down syndrome until after she was born. Then two months later I found out she had a rare form that was inherited thru me. My father told me if I got pregnant with another baby with down syndrome I better abort it. I was so taken aback and hurt. I have to say the pain never goes away from that. But at the same time, he didn't yet know my daughter who was only two months old. She is 17 now and in a few days she will be going to my parents for the week with her other sister that also has down syndrome and my three year old who doesn't(but is a carrier like I am). My father loves my childen, all of them. He told me a year after I had my daughter that he realised that she was want I needed in my life, that he had never seen me as happy. I'm not saying that my father is against abortion now, I wish. He isn't, he know believes that each person is different and it is their choice. That having a child with down syndrome is not a horrible thing.
ReplyDeleteI'm so sorry your sister is being this way. She has no right, she really doesn't. At the same time she needs to be educated. I don't know the best advice to give you. I willl say that you need to make sure that she does not voice these opinions in front of your other children. If she does, you may have to distance yourself from her. If she doesn't accept the baby after she is born, then the same thing. You can't have her passing on this attitude to your children.
There is all kinds of support out there for parents of kids with down syndrome now. I belong to over 3 support boards. I meet people from all over the world in real life that I have met online. I have built strong friendships with people who are involved with the DS community. So know you will never feel alone.
Gayla
Dave, how did the new church go?
ReplyDeleteTo all:
ReplyDeleteWe see here the new "anti-special needs" prejudice. It costs too much money. I am afraid we will yet see more of this.
To the new parents:
I learned years ago a marvolous technique for dealing with family members who hurt us: "Forgive and Protect"
Forgive them-- they do not know, understand, etc. It is to YOUR advantage to let go of the anger
yet at the same time "protect" yourselves. Do not let them be privy of information that they will use to hurt you, keep a distance for a while if needed... ie., do whatever you need to protect yourselves.
How sad that your sister doesn't realise that this young precious being you hold in your heart is one who will inspire and bring such joy and happiness but will also bring pain and sorrow... they also have a disability. Maybe as Fridawrites has said she will learn through experience but if not it is her loss not yours.
ReplyDeleteMyr
How sad that your sister doesn't realise that this young precious being you hold in your heart is one who will inspire and bring such joy and happiness but will also bring pain and sorrow... they also have a disability. Maybe as Fridawrites has said she will learn through experience but if not it is her loss not yours.
ReplyDeleteMyr
It's so sad to me that anyone would equate a life that will bring joy and love to this world with a financial cost.
ReplyDeleteHonestly the only govt assistance my child has received was for early intervention.
She is my healthiest child. In fact today two of my girls have fevers and are sick, but not my Tarenne. You never know what the child's health will be like, or what this little person will offer to the world that is invaluable.
HUGS HUGS HUGS and much love, and you are so right on, you now have a HUGE family!!!
once again, my heart is opened and MY faith in people also restored.
ReplyDeletei have never had to personally deal with the pain of such lack of support with my daughter...
new mom:i wish you all the strength and love needed to stay true to yourself and honour this new life which has come to you. you are clearly not alone!
tekeal
I didn't get a chance to comment on the original post, but still wanted to offer my congrats to the new parents-to-be! I'm sorry to hear there are some family members who are not being so supportive. It sounds like they are scared of the unknown, all they hear is the diagnosis. I think it's hard to picture who the child will be when you are still pregnant...some people only focus on the diagnosis and what all that could mean, but don't see the baby for being a baby (if that all made sense!) Sending prayers that your sister will come around - especially after the baby is born and she gets to know the baby as a baby first and look past the diagnosis.
ReplyDeleteCongratulations. You have been blessed. In reading the comments I did not notice any about being a sibling of a person with DS. I am 46 and have 39 yo sis with DS. I was aware of the many challenges that faced my mom in keeping a child with DS. I am so thankful that she did. Back then she was told to put Dorothy in an institution as soon as possible. We moved from Texas to California where mom hoped that there would be more opportunities. My mom's family was always supportive and encouraging. Dad's family not so much. Now that my mom and step-dad are much older and have disabilities of their own, I am so grateful that they have Dorothy with them. I consider them to be a three legged stool. They stay in balance because they have each other. Dorothy has her own little apartment on their property. She is interested in being even more independent and we are working on setting my parents up in a way so they don't need Dorothy's help so much. Who would of thought 37 years ago that a child with a disability would contribute so much to the family that we have to figure out how my parents can maintain their independence without her support. WOW
ReplyDeleteAgain, congratulations. You have been blessed.
Thank you, Mr. "Chewing The Fat" to continue to let us hijack your blog!!! You should feel very priviledged!
ReplyDeleteMom, sounds like your sis is jealous of you. I mean that seriously and not to just slam her. It is hard to act rationally when you are reacting to your jealousy. I just bet that is what all her continuous squabbling with you is about.
I think you should let this go when you can and act with as much grace as you can muster. This baby is going to be a great joy to the family and if your sister is not pushed into a corner. If it is made as easy as possible for her to "eat her words" she will eventually be a mighty ambassador for special needs children. She will have a great and glaring example of biased conceptions vs. the truth.
Of course, I could be wrong, she could just be a vile, useless creature but either way debating her is useless.
I honor you for being able to hold to your convictions while enduring such an emotional and difficult situation! (I'm speaking of your family and not the Ds - and I promise you will soon know exactly what I mean...Ds is a blessing to any family!)
Oh I am so happy - moved almost to tears - to read this. I am so sorry they are having such a hard time with her family. I hope the sister/aunt is able to open her eyes and hearts in time. But I want to add my congratulations to the parents-to-be and to their other kids. Our Davey is almost six now and we cannot imagine our family, our lives, without him. I look forward to hearing more!
ReplyDeleteDear New Mom,
ReplyDeletePeople fear that which is different, especially if society tells them not only is it different, but it harms them. Then when you add siblinghood into the mix, you get things like your sister not only truly feeling you are wrong to celebrate the birth of a wanted child, but also using that to bait you into an adult version of "She touched me! He's sitting on my side of the car!"
I am NOT excusing her behavior- but it doesn't surprise me entirely, and I know it doesn't surprise you either. This is only the first of many hateful people who will truly believe they are doing you a service by belittling the most innocent creature in the world: A child who has never even drawn a breath in a world full of hate, who is still blissfully unaware of anything outside the protections of his mother's body, whose needs are met instantly and who is loved.
Because yes, though I support the right of a woman to choose abortion for any reason whatsoever, it becomes a baby instead of a fetus when it is LOVED. I don't believe in arbitrary deadlines on a calendar where fetus turns into pre-born baby, but I do believe in a threshold of love: When it is a baby to the mother, it is a baby, because her expectations, hopes, and disappointments make it a baby.
Tell your sister something from me: She is tearing you down for choosing to want, love, and celebrate a child with a visible disability, a relativey well-understood disability, a disability for which there are groups, supports, services, and yes, both well-intentioned and maliciously intentioned hatred. Her argument is that the child is defective, and will cost society money.
But your child is wanted, will be loved, and will be raised to live with (not despite of) his or her disability, as the best person he or she can be. What about the children with the invisible disability of an abusive parent, of being unwanted and discarded in dumpsters, of never having someone tell them to celebrate their differences rather than hide them, of never knowing that their mother will absolutely fight for their right to live, love, and participate in society?
Many people can rise above a childhood of neglect and of being unwanted- my half-sister did, but it took her over 30 years to become a whole person. In the intervening time, she cost society money by being in jail, dealing drugs, using drugs and then needing the health care system to help her recover (of course, she was uninsured), fighting, injuring herself and others, joining the army and then being given the boot after already having been through training...
...The fact that her mother (we don't share a mother) didn't love or want her made her far costlier to society than any loved, wanted child with Down's Syndrome will ever be. She is now a fine mother herself and a great person, but it took decades of recovery, therapy, and a few life threatening wakeup calls.
Your baby will know from day one that he or she not only is loved, but is loved by a family that extends far beyond blood. That kind of a support network can't be put on Ebay and auctioned off, but it's priceless in terms of the value to society. If it takes a village to raise a child, you've got a whole metropolis rooting for you in raising your child.
Sadly, any children your sister has will see the example of hate toward a helpless little person-to-be, rather than the example your children will have of unconditional love, and of dealing with the obstacles life puts in your way with acceptance and by giving thanks. You have been given the gift of a chance to raise and love a child who is different. Give thanks for the opportunity to show the world- starting with any children your sister has- how a person goes about loving difference, rather than fearing it.
-Daine (virtual godaunt #6,172)
My middle daughter, who is now 21, has Down syndrome.
ReplyDeleteHow our whole family's life has been blessed to know this special person. My two other girls (ages 24 and 17)--have more love and compassion towards all people, no matter who they are, because of living and loving their sister.
And, my daughter with Downs amazes us every day with her courage, fun spirit and unending love for everyone as well as her love for life.
I wish more people could know such a joyous person in their daily lives.
We did not know before she was born, that our daughter had Down syndrome.
Like your sister, my sister was very upset.
She was upset that we chose to keep our daughter...that we did not 'give away' our 'defective' baby girl.
But she quickly fell under our daughter's magical spell (as did we all)...and learned to love and appreciate her, and her special gifts.
I hope your sister will learn to do the same. It would be a shame for her to miss out on someone so precious and special in her life.
I wish you the best. You have a new road to travel on...but it will be filled with unconditional love and many joys.
Welcome to our 'special club'--(as you will often feel as if you are in a special club when see other families with their children with Down syndrome. We have that special connecting link...)--
Peggy in California
Dave, you MUST have a virtual baby shower for this child, closer to the time. I'm sure every single commenter here would love to send a small token of their good wishes and support. You could use your address as a 'ship to' address.
ReplyDeleteBecause I'm already knitting something.
shan, what a great idea! Count me in!
ReplyDeleteLisa
Congratulations soon-to-be new Mommy!!! It's so exciting and I'm so proud of you for being such a great advocate for your child already!!
ReplyDeleteI wanted to suggest a fabulous anthology/book, "Gifts", written by mothers of children with Down syndrome, and it will give you even more hope than you can imagine!! It's so positive and uplifting and really makes you understand the gifts you will receive because of your child!
Congratulations!!!!! :) ~Emily
HI,
ReplyDeleteMy name is Amanda, and i have a brother called Aaron (19 years) - who is the most amazing person in my life. He just happens to have Downs syndrome.
When he was born it was difficult for my mum and dad - not because they were worried about what life would be like for him but because members of the family found it difficult to relate to this little person who was so different than them. However as he has grown, it has become easier and easier for the rest of the family to appreciate Aaron's massive contribution. They may not understand much about his unique abiltiies but they have learned to accept and love him, like the rest of us always did - without question.
Sounds like your sister and family are unsure about what is happening and what it all means. In the short term what is being said may be hurtful and damaging to your relationship with her but you just have to hope that once your little person is born with all his/her unique abilities your family will learn to love and accept them. like you, your husband and kids will do without question.
I hope that everything turns out the way it is supposed to and remember to stay strong and cry when you need too.
Amanda
I'm with Rickismom and Julia. Definitely protect yourself from further assaults and hurts from this sister--you don't need or deserve such ugliness. But also: try to forgive her ignorance and whatever else she's brewing, just for your own peace of mind; and keep enough communication open that your sister has a chance to apologize and change her heart towards your little one.
ReplyDeleteAnd congratulations! My son (who has a rare chromosome disorder, not DS but similar in some ways) is a joy and a blessing and has made the world more beautiful in a million ways, in his 13 years so far. He is loved, and he loves in return. We know he is happy, and the rest is truly just details.
I just want to say congratulations, again on your pregnancy. If I am allowed to, I want to post a video for you to watch. This is not my son, but it is so much what life is like, and will be like for you and your little one! Honestly, my youngest boy (who is 2, and has Down Syndrome) is the most amazing child... my husband calls him "the perfect one". And we have 3 other "typical" kids. Your baby is "perfect", and your sister will realize how incredibly lucky and blessed you guys are to be preparing for this extremely valuable, amazing child. Here's that video...
ReplyDeletehttp://www.onetruemedia.com/otm_site/view_shared?p=5417c69bbb7ec111849299&skin_id=601&utm_source=otm&utm_medium=email
God bless...
Sharon
Ok...One more time on the video link...
ReplyDeletehttp://www.onetruemedia.com/otm_site/view_shared?p=5417c69bbb7ec111849299&skin_id=601&utm_source=otm&utm_medium=email