Where can I begin

[faithhope]

You are all so amazing and I have been overwhelmed by all your love and support. I have cried tears of joy as my heart slowly heals little by little.
To be honest I still am heartbroken, but you all understand that and you have all told me that you have been there, at least most of you with the mourning of the "typical" baby.
I am so impressed by all of your honest answers, some of you even admitted painful thoughts for the first time. That is the only way for me to get better. I need to be honest with all the horrible thoughts. When I read some of your posts about your everyday situations, and your evaluations of what level your child is at, what they go through, etc. it scares and depresses me, but you all sound ok with it, I guess we have no choice, we have been given what we are given and we have to move forward, and take what comes our way. All the while loving our child.
It scares me some of the thoughts I have of my baby. I wish I had never had him. I also know that like you all assure me, that feeling will get less and less and it will be replaced with an undying love and devotion for him.
I can't wait for that. Until now I am not ready to join a support group where I meet the families in person. This online support is perfect for me. I love that I can talk to you anytime of teh day r night, get my feelings out, and come back later and all these people I have never met are there for me with responses, with help or just with understanding compassion.
I still cry all the time, I am crying now, I worry what my future will be, what he will look like, what he will become, how I will handle it, what others will think, etc. The lists goes on, but I also know that I have a place where I am not alone, where you understand all my thoughts and pains, and where still beyond all that you offer me a glimpse of a future that is so so so much brighter and certainly filled with love for a baby that I still am afraid of.
I look forward to getting to know you all over the years, I feel like we are already great friends, part of a sisterhood, that only the mother of a special child could understand and be part of.
OK well that is all for now, but I have so much inside that I will need to be getting out, so you will be hearing from me, and I love hearing all I can from you. Thank you for your honesty and just for everything, the poems, the thoughts, the love.
Love,
Jessika

[Googsmom aka Jennifer]

You are so welcome!! That is what we are all here for!! Support and understanding. (((((Jessika))))) Hugs

[ALLISA]

Jessika,

I am glad that you are feeling better, this site supported me through Erin's surgery, a divorce, stress after my son was diagnosed with Diabetes and Erin's dx of autism on top of DS.....it is a wonderful place for support, hope and comfort.

The internet is a great place to reach out to people, learn and research, but don't underestimate the power of local real-life support & comfort.

How old is your son ? A couple of months ? and you don't have an acutal diagnosis yet, waiting for test results ? To me, I think you would be expected to have a harder time dealing with it than most of us. I was told within minutes of her birth that they suspected she had DS, yes we had to wait a few days for verification, but I had that time to digest and adjust to it.

I was so afraid to hold her for the first time because I was afraid I wouldn't fall immedialtey in love with her like I did with my boys.....but I felt that melting love as soon as I looked at her ( and I was so happy that I felt it !! )

While it is normal to have fears, anxieties, etc....please don't hesitiate to to talk to YOUR doctor if you feel your depression and sadness is becoming to burdonsome to handle.

Depression and sadness are normal and can come and go.....but after recieivng some overwhelming news at a time when your body is trying to regulate its hormones and return to it's natural state.....it wouldn't be far-fetched to think that the body is stuck (depressed) and can't get back to it's natural state.

Depression is a physical ailment. Because it affects moods, some think it can and should be controlled but it is PHYSICAL in nature and if you need some help ( meds) to get back to yourself, there is no shame in that.

Please don't misunderstand me....I'm not proclaiming that you ARE depressed ( I don't even know you .....though after watching your beautiful slide show.....I do feel like I know you and your family a little and they look like a happy, solid, faithful family) ..... I'm saying take it easy on yourself and help yourself if YOU think you need it.


I found Uno Mas immediately after Erin was born and the thing that helped me most was the photo album....it has changed a lot from the way it used to be set up.....you used to be able to browse all the pictres in random order....and I just LOVED the pics of the kids and families....it showed me that life does go on.....have you checked out the photo album yet ?

here is the link to mine....not sure if it works or not, but if it doesn't, my album is # 106.....

www.unomas21.org/main.php?g2_itemId=3332&g2_navId=x3e809f48

[cindylou]

Jessika-
I wasn't online for your first post--but just read this thread and wanted to respond. My daughter Kaylee is 14 and in 8th grade. When she was born I was 27 and had no idea that she would have Down syndrome. She was our first child. I remember having all the thoughts and feelings you are having--and worrying so much about the future. I also did not join a "support" group because I couldn't handle it. I was just working on getting through the first couple months and being okay with everything. I remember feeling like I couldn't cry (at the hospital) in front of all my family and friends because somehow I would be letting them down. I would go home and cry (she was in ICU for 14 days) alone in my room with my husband. My dad suggested we take a break from the hospital and get some time alone so we went to the movies. At that time Mel Gibsons movie "The man without a face" had just come out and this was in the prime of Mel's career--so we wanted to see it. It was all about a man being ostracized from his community because he was disfigured. We both cried through the whole thing--and now 14 years later can look back and laugh at what a wrong pick that was for us to watch at that time! It seems everything is heightened emotionally--every look and every statement from anyone in these first years.

I must be honest with you though--Kaylee is truly loved by her family and an abundance of friends. She is not lacking for activity and community support. She is embraced. I know that you will find the same for your son. At the time my husband was a pastor--and the idea of a "perfect little" family with kids that excelled at everything was what was in my mind. I kinda had to let go of that...basically say screw the worlds perception of what 'perfect' is--and be couragous myself in order to pass that courage on to my daughter. (And believe me--she is one tough cookie..!) I did pray for good friends for her--for siblings that would love her and support her (and fight with her--because that's what sibs do) and for a normal family life that is not DEFINED by Down syndrome. I consider it to be like freckles..just an added factor. Not one that decides who she is. I don't let the Down syndrome define our families existence because it wouldn't be fair to Emma and Sam to have that be the main focus of our lives.

Sadness is normal. It comes and goes when different things occur. I honestly couldn't read all the books because I felt like my kid was becoming a statistic in my head--so I put them down and sat down on the floor and talked with her--took her to the beach and played in the sand. Looked into her eyes and saw that she simply wanted me to be her mom, so that's what I did.

you're not alone--your thoughts and feelings are totally normal. I found uno when Kaylee was 4 or 5 so I've been around her for 10 years--I come and go because I can't let the Down syndrome aspect of our life take over...but I'd love to continue getting to know you! Hang in there!!
cindy

[Jodi]

Hey Jessika:

These are probably the most difficult days, but they will pass. I remember feeling like my child had died and I mourned. I was told that grieving was normal, but I felt guilty for it. Looking back I understand now, but at the time it was just so hard.

I remember thinking about the future just like you. At one point I had to stop and literally say, "can I handle this... just for today?" The days will get easier.

Hugs to you!!!!

Jodi

[Emilysmom]

Jessika,
I'm so glad that our experiences are helping! I've been here for about 8 years now, and the friends I've made on this site have helped and supported me so many times!!! (And sometimes I've needed support with things that have nothing to do with Down syndrome.....(my knee replacement, death of my mother, death of my younger sister, school situations with my other children, etc). This is a wonderful group of friends!!!!! And one thing I've found is that we are supportive in very difficult times, like what you're going through now as well as very happy times. Last year, my daughter with Ds was chosen to be in the 8th grade homecoming court, and the very FIRST people I wanted to tell was Uno Mas! I have received some really good advice here, but mostly I've found a group who truly cares when I vent and understands when something frustrating or really great happens.

I can remember rocking Emily when she was a newborn with tears streaming down my cheeks and apologizing to her over and over............for the life I thought she was going to have, for all the stuff I was just sure she would miss out on, and for the fact that I wasn't certain I had the capacity to be the mother she really needed and deserved. I don't remember how long that lasted, really. But, I do remember that I prayed constantly for her, and for our family as a whole. And little by little, everything began to fall into place. We got started with Early Intervention, and I think that was as good for ME as it was for her. I felt like we were making sure she got every opportunity to grow and learn as she possibly could get. And she has had a GOOD life! She's happy, and she makes us happy! She has a wicked-funny sense of humor that we all enjoy. She is a blessing to her friends and family and sometimes even to total strangers. She makes me proud on a daily basis! Ok........I got carried away. But I just had to say that I did have fears about her life 16 years ago, and it really has been very good.

I think it's so interesting that we're all so different in our reactions. Many people post that they hate it when people say "I'm sorry" when they find out their child has Ds. I never minded that at all. In the early days, I would respond by saying thanks and assuring them that it was going to be ok. But it seemed natural for them to be sorry that we had received news that really wasn't what we had hoped for. Others have said they hated to hear "congratulations", but I sort of felt sad when people failed to congratulate us! Makes sense, I guess.........we're all different!

From your photos, it looks like you have a good support system from family and friends. And they seem to love your little guy already! That's a huge help!!!

Susan

[Chris]

Jessika,

Hugs to you! I can't help but wondering if your sadness is more than just mourning the loss of the baby you thought you were going to have. Maybe it is the baby blues or postpartum depression. Please let your doctor know how you are feeling. Depression is certainly not a rare occurance after devastating news and then to add weird hormonal changes on top of the possible Ds diagnosis, I'm sure you are overwhelmed.

Chris

[Debbie]

Hi Jessika.

Welcome to Unomas! The people here are so amazing and have been through so much. I consider them my friends here on the Internet. However, I am not a parent, sibling or even an Aunt. I am an adult who has Down syndrome. I am forty seven years old.
I don't know how long I have been on here, it has been quite a while now, but I am so glad I found Unomas. I share my memories and life experiences with those who need to know how it feels to have Down syndrome. My problem is that I am able to write and read. I do these things well. Sometimes this can throw a person off. I have what is called Mosaic Down syndrome. I was offically diagnosed at Houston's Children's Hospital at the age of three or four years old. My Mother already suspected this before I was offically diagnosed. She just had a problems believing it. I am a High School graduate. I still have my cap and gown to this day. I am a Poet. I am what I call a struggling Poet. I write spradically. I love to read! I love history.

[Myria]

Debbie, you are such an inspiration to me!~ I would love to read your poetry!

(and Hi Jessika and Noah! Kiss that adorable little baby for me )

[Kristin]

Jessika,
I understand what you mean by not being ready to go to a support group. I started with just getting through the first month. At the end of the first month, my daughter and I started meeting with an infant teacher. That infant teacher was the one who helped me work through things and develop a different perspective on my daughter's life. I think my daughter was about 9 months old before I went to a picnic for families of children with Down Syndrome. It was both frightening to see the range of abilities, and encouraging as my daughter was instantly accepted into the group. Know that there are resources out there, when and if you need or want them. I still rely on Unomas for support. It is nice to have a place where you can blow off steam, cry, vent, and know that others truly understand where you are coming from. (I've also found they offer a great range of advice!) My daughter was my first child, and we didn't have a diagnosis until birth. The nurse took one look at her and called the neonatalogist. From there we were swamped with information and more questions than there were answers. Hang in there, and if you need to put a face to an unomaser before you go to FL...I live in Bakersfield!

[edugator]

Jessika- Hugs, hugs, hugs!! I totally understand about the online support choice- it was what I sought out as well. I just wanted to find parents and families like us- the ones that were no longer found in Parenting magazine! I can remember crying- all day, everyday- as I grieved for the little one who wasn't to be. I can also remember that bit by bit the crying slows down- so much so that one day you realize it had been a little while since tears fell. It will help tremendously when Noah starts to respond and smile at you- just like he is supposed to do. It is AMAZING what a simple smile will do.

When are you all planning on making the move you mentioned in your first post? Personally that is what worries me most for you. We moved when our son was 6 weeks old- and it was only a 100 mile move, not cross country. Not knowing anyone and having a new baby was hard. I am keeping my fingers crossed that it is a smooth transition for you and your family!

By the way, I saw your hubby's website- it is wonderful!! Is the little girl pictured your daughter? She is a doll, too! My oldest was just shy of 3 when James was born. She ADORED him- we have the cutest pics of them together from back then! Then when James was 2, we had another daughter- SHE is a hoot. And now, number 4 is on the way- I am due the end of March with a little boy (who is genetically typical- which is VERY relative in our family!!).

I look forward to reading more about baby Noah- keep us posted!

Tracy

[Jackie]

I can identify with not wanting a support group. When Em was born in Denver 27 years ago we were pretty isolated right after her birth in a military hospital. I did not even have a phone in my room. She and I remained in the hospital for a week due to some surgeries so postponed even telling the children and our friends while we waited for it all to sink in. Our wonderful neonatoligist and pediatrican urged us to seek out others...and I finally did...but by phone. I did not meet anyone else until I took Emily at 6 weeks to an infant stimulation class which was held in a school room of an elementary school. This was my FIRST contact with other parents...and what a wonderful thing it was. I could hardly wait to go back. I then was contacted by a mom of an older child who had managed to get names of several of us in the Denver area with new babes...and had us all meet for a pot luck lunch. That was the beginning of the wonderful world of "support groups" for us. I am sure when the time is right you will reach out too...but for now we are a nice safe haven for you to share with. We have all been there and while we hate to admit it ...most of us have had the same feelings you are experiencing now.

I will openly admit I too worried about what my child would look like and ...would people stare at her...and us...etc. It is only normal to think those thoughts. After a while it no longer bothered me...I did not see the DS every time I looked at her...I just began seeing...Emily , the person. You will do the same in time. Please stay with us...we love you.

Jackie

[Renee']

One day at a time. You will get there eventually. Don't beat yourself up. You came to a good place to start. You can see my peanut in my album. More than anything she looks like my husband.

We are glad you are here.

[Deborah]

I too can indentify with not joining a support group right away. I had 3 young boys at home and really didn't have the desire or really the time to join a group. Jennifer was over a year old, probably closer to 2, before I contacted my local support group. That's when I was ready to meet other families and connect.

Jessika, just take your time. When Jennifer was born I was SO afraid of her and now my mother in law and I laugh at the fact we were so scared of her because we cannot imagine our life without her.