Pregnancy & Motherhood Forum

by **mrsjoh** » Wed Jul 23, 2008 6:22 am

people mean well and now that I look pretty pregnant we get a lot of comments, esp the "well as long as it's healthy" ok I get it but he's not healthy and I will love him anyway :mad:

I am just getting stressed as we have alot of drs apts and other stuff is always going on, I want people to stop talking to me about my baby :mad:

even a friend said . oh everything will be ok, I just need to relax?!?! ok she should know better, when someone I know is going thru something I think the less I know about it the less I try to make things up to say.. We are very positve and hoping for the best but having friends patronize me is making me want to avoid their calls, but the strangers reminding me that I should focus on a healthy baby is driving me insane, am Isupposed to educate each one?

sorry for the rant, and thanks for listening

by **hoping4another** » Wed Jul 23, 2008 7:12 am

That is interesting that you bring this up because I have often thought about that comment too.... "as long as it is healthy".... What if the baby isn't healthy? Of course I would still love the baby. Having to go through the potential of this baby having problems, I have learned that comment is not what I want to hear. I doubt I will ever say it to anyone either.
And the "relax" comments drive me a little nutty too. A mom who is worried about the health of her baby.. relax? Are you kidding me? I don't think that some people understand that. We try to remain positive too, but I remember when things were looking very bleak that I got the "just relax" comments. I thought that was very rude and inconsiderate.
I am sorry that you have to go through this, but I can sympathize.

by **lizzen** » Wed Jul 23, 2008 7:29 am

I won't go into the long, drawn out story of my last pregnancy, I'll just say that I understand where you're coming from. Sometimes it seems like every mother to be in the world has the consolation of expecting a healthy baby except you. I guess it's just hard for others to put themselves in your place if they haven't been there. But no, I don't think it's up to you to educate everyone who makes a comment. Somedays it's just not worth it. Good luck with the rest of your pregnancy and congratulations on your new little miracle!

by **mamalynn** » Wed Jul 23, 2008 7:55 am

sorry you have to go through this. i have been there and it sucks! there will be no shortage of ignorant people, believe me! please remember that many people find it awkward and really do not know what to say. it is not an excuse but a reality. i remember it being very hard to maintain my composure at work or around family and friends who even knew. some of our friends were shocked as to why would continue the pregnancy and others were supportive and thrilled for us beyond belief. i guess what helped me through it was to shroud myself in hope that all would work out. let people know how you feel and that you really just need someone to listen or a shoulder to cry on.

the doctor's appointments can be overwhelming, but in the end they were very reassuring to me. as far as educating people, yes, if your baby has special needs and health problems...educating others is what you will do. i know it seems like a bit much right now, but you will become not only an expert on your child, but the biggest advocate he/she will ever know.

you are growing a miracle inside of you. it is a blessing that will change your life and bring you so much happiness!

hugs to you all!

by **mamalynn** » Wed Jul 23, 2008 8:02 am

i just wanted to bump an old thread that kind of talks about what i was feeling at the time. it is the welcome all thread. i was about 23 weeks then. hope that helps.

lizzen, you are there too! i guess that is where we met, huh? also, i wouldn't educate everyone either, but most i do.

by **hoping4another** » Wed Jul 23, 2008 7:41 pm

I checked out that thread, Michelle. Thank you for sharing. Your son is beautiful!
I do occupational therapy in a school district and I have to say that I love children who have DS. They are some of the most loving children that i have ever met.
Lizzen.. you have beautiful children also.

by **mamalynn** » Wed Jul 23, 2008 8:27 pm

thank you very much hopingforanother! i can't wait to meet your precious bundle!

by **dixiechicken** » Thu Jul 24, 2008 6:38 am

I didn't go through these feelings when I was pregnant, because Wade's problems resulted during birth. However, I kinda feel what you're going through in the sense that everyone around me kept telling me how Wade was going to be just fine. I *knew* from the beginning that Wade was going to have developmental issues, but everyone kept saying, "Nothing's wrong with him. He's going to be fine." I just wanted to scream, "No he's not *just fine*! Do you call a 10 month old who can't sit up *just fine*????" When we're at Wal-Mart and Wade is doing his best to sit up straight in his cart, people will come up to me and say, "Oh, he's so tired." Again, I want to scream and say, "No, he's NOT tired, he has f'ing cerebral palsy!!!!" But, I tend to just put a smile on my face and agree with them. I find myself becoming more bold though as he gets older. Now everyone's saying, "When did he start walking?" or "Is he walking yet?" So, I respond with, "Not quite yet! He has cerebral palsy so it will be a little longer yet!" It gets old, but I know people mean well. Wade doesn't look like he has any kind of medical issues, so I know it's hard. One of my neighbor's told me the other night that they really don't know what to say to me. They tell me what they think I want to hear. But you know, this is my reality, my life. So, let's be realistic. Celebrate our victories and cry with us when things aren't going so well. But like Michelle said, you will become the biggest advocate for your child. There will be times when you choose to educate people and times that you just agree to appease.

I'm sorry you're having such a frustrating time. Your experience will strengthen you and make you a more empathetic person. I am completely blessed having a child with special needs. Wade has already done miraculous things with his life, and he is only 14 months old!! Good luck with everything!

BTW, I just reread your post and it reminded me of something another neighbor told me when Wade was still in the NICU and I was still in the hospital. My husband was at home with a bunch of neighbors and they had just finished praying. This particular neighbor walked up afterwards and said, "Well, whatever happens, you're going to love him anyway!" Oh really? Well thanks for filling me in on that! I thought I'd just abandon him at this point and forget the whole thing ever happened. REALLY?? "Love him anyway"??? Also, she said this on quite a few occasions. That wasn't a one time slip of the tongue! :mad:

by **mamalynn** » Thu Jul 24, 2008 9:06 am

thanks dixie for sharing that! oh the everyday frustrations! people think pj is barely a year, then when i tell them how old he is, they look puzzled. then it is the "my grandbaby is blah blah and can do blah blah" that is when i sometimes tell them of pj's disabilities. most do not even notice the down syndrome and some even tell me i should get a second opinion...wtf??? :roll:

by **dixiechicken** » Thu Jul 24, 2008 1:49 pm

A second opinion?!?! That made me laugh out loud!! People are just weird! :roll:

by **mrsjoh** » Fri Jul 25, 2008 10:28 am

my youngest niece is developmentally delayed, she has a lot of issues and can't quite get a diagnosis yet. She started walking at 3, (she' about to turn 4!) she doesn't talk yet, and she is small, people always comment on her or guess her age wrong, but she is such a bright beautiful person. She has a wicked sense of humor, loves going to her school with her great teachers and loves to read magazines. It is sad when people can't see the beautiful person someone is, only their differences from them.

by **PixieB** » Sat Jul 26, 2008 12:18 am

Whilst I adore my baby-monster, I know I could certainly do without the ignorant (and not so ignorant) comments of "oh she's so tiny" and "but she's perfectly healthy". Of course she's tiny, she came 3 months early and was small for dates then. And I strongly doubt she will ever catch up. I'm resigned to never having a chubby baby. Such is life.

Whilst I would have loved to have had a regular healthy normal pregnancy, I didn't. I'm incredibly jealous of women who breeze through with little to no complications, having these fat healthy babies who never see the inside of a NICU. People who freak out at the concept of their child being fed through a tube in their nose, let alone being ventilated and having multiple canulas etc.

It's where you find that the people who've had complicated pregnancies and haven't gotten the picture perfect baby at the end of it really are the best people to talk to about the stresses you're living. Other people just can't comprehend it because they've never endured anything even remotely near what we have.

People in general, want to believe that everything is happy and shiny. They desperately ignore anything counter to that view, which is isolating and hurtful for those of us living the less than ideal existence. I'm still angry at an aunt who couldn't bring herself to look at the videos of Talia as a tiny micro-prem in her humidicrib, just breathing and twitching, because it was too confrontational for her. I was living that, I couldn't escape it, I couldn't deny its existence. That she could edit that out of her reality was highly offensive to me.

I adore my baby girl. And you already adore your baby so much.

There is a gift in all this agitation though. You will celebrate every tiny milestone as something so much greater. You will have so many more milestones to celebrate too as every little achievement will be like graduating from University over and over again. You will have fabulous nurses who will celebrate those achievements with you (our NICU nurses were lovely when Talia reached 1kg, and the cheeky things she managed to do). You will discover who your best friends are, your dearest most loving relatives, as they will be the ones who do research on the conditions your facing, who will offer real and practical assistance, and who will let you fall apart when you need it rather than expecting you to be positive 100% of the time.

It's hard to find the blessings, but they are there. And you may find you'll have one day where you'll just snap at someone, mouth off at them telling them that no, everything is not ok and it won't be for x, y and z reasons. And they'll leave feeling about an inch tall but you'll be buzzing with it, finally having told someone off. Somewhere inside, I expect that will feel brilliant.

by **PixieB** » Sat Jul 26, 2008 12:21 am

I also get tired of rattling off the details of her being premature. Unfortunately it comes up often enough as the first question people tend to ask is "How old is she?" and when I say "12 months" when she's the size of a 4 month old...
Sometimes it's worth it, other times it's not. Measure it by how generous you're feeling with your time. Education is one thing, wearing yourself down dredging up the story again is another.

by **mamalynn** » Sat Jul 26, 2008 3:43 am

such good points pixie! i am sorry your aunt behaved that way, that is hurtful!

i remember when pj was in the nicu, my mom had come into town for a visit. she is ill and has awful episodes during stressful times.anyways, i had just been released from the hospital and went to visit her. i made it quite clear that because she was sick, i would not hug her. she became upset and looked at my dh and forced him to hug her. i was fuming and i got mad and yelled "you are sick, my son is in nicu, what are you thinking? didn't you her me?" she was completely ignorant and insisted it was fine and she needed a hug. next day she ends up in ER in the same hospital as my son.

i also get a rude phone call from my aunt telling me how i was wrong to be that way with her, that i hurt her feelings. OMG i was so pissed and hurt and hormonal. i got off the phone and burst into tears thinking what could be more important than pj at that time. it was the worst feeling ever. i was worried about my mom, but had already decided that i can only put pj first. i had no time for anyone elses feelings but pj, myself and my dh.

sorry to rant about that, but your story triggered that memory. :oops:

by **dixiechicken** » Sat Jul 26, 2008 3:56 pm

Pixie--Your story of your aunt made me think of this. This is my favorite picture of Wade!

I used it for one of the picture's on his birthday invitation, it's on my blog, and I have it in a frame with 2 other pictures in his room. My mother HATES it!!! She doesn't like to remember him like that! :evil:

She says she can't stand to look at it. When I see the picture, I see hope and strength. It looks like he has a little smile and his eyes just seem to be looking up at me to let me know everything's going to be okay. Lucky for my mom, she had to go back to VA 4 days after Wade was born, so she didn't have to go to the hospital everyday and see this in person. I did, and I never want to forget it. This experience has forever changed me--for the better. What Wade has gone through in his short life is going to make him a very special person.

You articulate your thoughts very well. Thanks for sharing your information.