DownSyn Forum

Peaches · Posted: July 17 2009, 12:12 AM Post subject: Hi, I'm new here!

Hi everyone! It has taken me a long time to post a message here. Last May I left for the hospital telling my beautiful little two year old daughter that I was going to be bringing her baby brother home in "a couple of days." My only worry was about leaving her (for what I had assumed at the time would be two to three days) since I had never left her before. Later that night my amazingly handsome son, Lucas, was born after a very scary emergency c-section. The second he was born the doctor lifted him into the air and all I saw was this cute little face and blond baby fuzz hair that seemed to look like a halo around his head. I was thrilled and I turned to my husband and told him how he looked just like his sister.. expect that he even came equipped with a halo! I remember my husbands face...he was so happy and his eyes were filled with tears of joy.

Seconds later, my husband brought him closer to me and I realized that my husband's face now seemed serious. I asked if everything was ok and he said that the nurses told him they were pretty sure he had ds. I felt numb...and then I went into this really strange denial. I noticied that all the nurses and my doctor just looked so sad and concerned. They wheeled me to the recovery room and it was just really quiet. Not one person congratulated me. I held my son for the first time and my heart knew that he had ds, but my mind kept saying "they are all wrong .. he looks just like his sister...his face is just swollen so it makes his eyes look a little different..and his nose a little flatter..they will all see in a day or two."

A few hours later a pediatrician from our practice came to see us. My whole family had arrived by now and I told them all that they suspected ds but that I was sure they were wrong. The doctor then unwrapped my son from his blankets and went through each of the reasons that they were sure he did indeed have ds. She kept saying how sorry she was and that she "wished it wasn't true." I remember feeling like the air had been sucked out of the room...and my time of denial was gone. Still no one had said congratulations. Everyone just stood around my hospital bed looking sad and worried. I told my husband I really couldn't hold him and I was just in too much pain from the surgery. The truth was that I was too sad to even look at my little boy...my beautiful little boy.

That night my little guy was taken to the NICU and he was diagnosed with pulmonary hypertension. Within a few days the tests results came back positive for ds. He stayed there for three weeks on oxygen, and although we were very fortunate that he didn't have any other health concerns, it was the hardest and longest three weeks of our lives. I stayed with Lucas during the day and my husband stayed with him at night since we didn't want to leave him alone.

I spent the days being overwhelmed with all sorts of ds information and scary satistics of things that could happen, all while feeling incredibly alone and sad. Everyone I came into contact with at the hospital had this look of pity on their face ... it was as if my son had a terminal illness!!

Meanwhile my daughter was so confused and didn't understand where Mama was going every day and why her baby brother was still not home (the NICU didn't allow her to come visit because she hadn't yet gotten the chicken pox vaccine) I had started to feel as though my whole life had been turned upside down and nothing would ever be ok again...and then I picked up my son to attempt to breastfeed him (which was like tackling a tiger) and he grabbed my finger. His soft, chubby little fingers just grabbed hold of mine and would not let go. He was staring at me and it was as if he was saying "hey, Mama...stop being so sad...just look at how handsome and perfect I am!!" My heart just swelled up and I felt this amazing love and happiness. I told the doctor that I wanted to just take him home and he agreed that Lucas could go home on oxygen and we'd have a visiting nurse come check on him. Within three days Lucas was off oxygen and after a series of tests, the cardiologist told us that the pulmonary hypertension had resolved! We were so thrilled....not only because of that, but also because he was home and our daughter finally got to see and hold her little brother for the first time. Watching how all she saw was her perfect little brother was incredible.

A few weeks later I came across this website and just reading the posts really helped so so much. It has been amazing to know that there are other moms out there who just understand. Lucas is now 14 mths old and is such a great little guy.. and keeping me very busy! He is pulling himself up to stand on just about any piece of furniture he can find, and is constantly crawling all over the place (it's a cute army crawl but still a crawl!) He is the sweetest, and happiest little guy who adores his big sister (the feeling is mutual) and being cuddled. He is also a true Mama's boy (which I LOVE) and just lights up whenever I look his way.

I'm sorry for this long post, but this is the first time I have actually told our whole story of Lucas' birth to anyone. I also wanted to say how thankful and glad I am that this site exists because you have all, without even realizing it, helped me and my husband get to this good place that we are finally in. We still have good days and bad days but overall we just love our little man.

NiksWil · Posted: July 17 2009, 1:23 AM Post subject:

Hi,
Thanks for sharing your story. I still have tears in my eyes from reading it. I share so many of the same feeling that you described.
My little man Wil is only 4 months and I still get the sad faces and 'sorrys' when i tell new people that he has DS. It breaks my heart every time. But I guess it would be wierd if they jumped up and down saying 'Yippee" There really isnt a right way to react I guess. Altho a few of my hubbys family obviously didnt know what to say so they didnt contact us at all. I got really angry too and all I wanted was a congratulations on our beautiful Healthy son.
I feel so lucky to have found this forum early on!
Look forward to hearing more from you and little Lucas.
X

_________________
X X Nikki, Wife of my gorgeous man Luke.
Proud mum to:
Zac (03/11/03)
Taj (26/02/06) and
Wil (18/03/09) DS

earlyam · Posted: July 17 2009, 3:10 AM Post subject:

Hi and Welcome! I have a little boy Ethan who is 19 months and was also diagnosesd with DS after he was born.

Your post is so beautifully written! I think we all have this common bond of the emotional journey we go through after our little ones are born and thats why this forum is so special Very Happy

Lucas sounds just like Ethan - into everything - He's not crawling but an ace bottom shuffler who shuffles into lots of mischief, but I love it Laughing

Ethan also has a big sister who is a real mother hen and can't do enough for him!

Looking forward to seeing pictures of your little family!

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Jo, Mum to Georgia 11/11/03 ( BIG High School Musical fan) and Ethan 16/12/07 (DS)

Helen · Posted: July 17 2009, 7:03 AM Post subject:

Thanks for telling us your story. Your little man sounds such a character, and loads of fun. Great to have you on board.

_________________
Helen

Mum to ...
Rachael, Matt - DS & Autism - and Hannah. My gorgeous kids!

julesinottawa · Posted: July 24 2009, 9:22 PM Post subject:

What a great, heartfelt introduction. Welcome to the board. My son is just a couple of months younger than yours (born July 9th) so we have something in common. I have to say I'm sorry also though, but not because your son has Ds but for the awful reaction by your health care team and family. Maybe things are a bit different here (I'm in Canada) but I had only one person not say congratulations and that was my step-mother who had a relative that had a baby with Ds (back in the fifties) and knew only sad stories. Everyone else was wonderful. I think it's a shame that they didn't support you the way you should have been. But it sounds like you are adjusting well and getting on with loving your little boy. I hope you're able to post pictures to share him with us.

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Julie, wife to Jason, mama to Olivia (Sept 00), Ethan, (Sept 02) and Leo (July 08)Ds

Momma2Bean · Posted: July 26 2009, 12:32 AM Post subject:

Hi Peaches, I honestly thought I had already posted to you...but didn't see my post so here goes...welcome to the board! I too have a Lucas who is the absolute love and light of my life. Thanks for sharing your heartfelt story. I look forward to hearing more about Lucas and to seeing photos. Take good care,

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Sandy, momma to Lucas "the bean" (10/15/06)

Mom2EZ · Posted: August 18 2009, 10:34 PM Post subject:

your story is beautiful!!! I have chill bumps! You are a beautfiul Mom....

_________________
Pamela

Elijah Zade (DS 9/1/04)
Canaan Grant (2/17/06)
"Some of our hurdles are unfairly higher than those others face, but that is what makes the true measure of the person -- not the size or quantity of hurdles but having the intangible fortitude to overtake each hurdle in stride." a qoute from an email sent to me the day EZ was born...from my wonderful friend..Paul Boyd

ME's mom · Posted: August 19 2009, 7:26 PM Post subject:

Congratulations on your beautiful gift! Your story is beautiful, and so is your blessing. I am sorry that others did not immediately see the blessing. I do hope you will bring him back there, so they can meet the person they missed the first time around. It may be very humbling for them to see your joy, and his beauty! Thank you for sharing your story, it is beautiful! Diane

mariahsdad · Posted: September 09 2009, 1:25 AM Post subject:

I feel truly blessed that God has chosen me to be the father of a child with Down Syndrome. Not everyone is honored in such a way. In a world that can sometimes be cold and hard, Mariah is always there to light the way with her sunshine smile.

marlene · Posted: September 12 2009, 12:07 PM Post subject:

Well, boy! I am late welcoming you!! I missed this the first time around! SO, WELCOME!! And may I say, CONGRATULATIONS!!! Very Happy

Although Aleena is 5 years old, I can remember her birth and our time in the hospital so keenly. It was a sad and scary time. We all have to walk through that time of grief, but it's beautiful on the other side of it, isn't it? I'm so glad you shared your story, and I'm even more glad to hear how well you are doing!!! Keep visiting here - it's a great resource and source of encouragement!!! {{{hugs}}}

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Marlene, mommy to my precious Aleena (1/30/04)