Newbie needs some perspective and emotional help

[leylah]

Hi, I introduced myself awhile ago and have been mostly lurking since then, but I find myself in need of some perspective from other parents who have gone down this road.

Since I haven't posted much at all since my intro I'll reintroduce myself here. I'm Laura and I have a 3 1/2 yr old son and a wonderful, now 6 month old daughter who was born with ds. We didn't do any testing so it was a surprise when she was born and I definitely had a very hard time with it at first, but it has been working itself out. What has been hard is that so few people have been able to really understand the emotional roller coaster, and now I'm feeling it kicking up again.

One of my best friends had her healthy beautiful baby girl yesterday. I really thought as it got closer that I would be fine with it, that I would just be so happy for her that I wouldn't think about my daughter. Well that didn't happen. I went to the hospital to see them and was fine, but as soon as I left the hospital I felt like I was sliding down into a mine shaft with very slippery walls. I love my daughter fiercely, but I felt a tightness in my chest and I started looking very critically at where she is developmentally, and started wondering again how it was going to feel when her peers begin surpassing her.

I feel so awful, so flat and tearful and aching. Being smart has been my saving grace for most of my life. When I was a kid I was never the outgoing one, the beautiful one, no, I was always the smart one. I am no towering intellect, but did well in school and had that librarian look and have always been proud to be considered smart. My daughter, in a very realistic view, will very likely not be considered smart. My friend's beautiful little girl has endless possibilities - and believe me I know that life has no guarantees, but at least her girl is starting out with those endless possibilities, mine lost a good chunk of hers when she was born and I'm angry. But I'm not angry at my friend who has been so thoughtful and supportive but I don't think I can hide how I feel right now and I know she's kind of looking for me to be okay and I'm just not. I don't know what to do, I do not want to spoil her beautiful babymoon, but I'm in so much pain right now, my throat is tightening up even as I write this and I keep thinking about how my babymoon was spent worrying and crying.

I feel a big depression coming on and I have never been good at hiding my feelings. She wanted me to come to the hospital again today, but I got out of it because my son had hives. I put her off on the phone when she asked if I could come over to their house tomorrow, but how long can I do that? I just want this feeling to go away.

Did anyone here have a similar experience? How did you or do you handle it, how can I help myself get past this so that I can be emotionally available to my family and friends and not constantly being sucked down into depression everytime she's late with a developmental milestone?

[ourangelalicia]

For some reason I have been blessed for the most part and not felt much of what you are talking about...at least not at the level you are talking about. I just wanted to tell you one thing. I did not think my daughter would be considered smart either...I was the national spelling bee champion, ect...so that was something I also understand. I was never popular or gorgeous...I was smart. However.....at about 10 months old my daughter figured out how to work the VCR. If you show her how to do something one time she knows how to do it. Pushing buttons on toys to make them turn on and off, turning on and off lights, putting keys in doors to unlock them, changing the channels on the TV....ect. She has a book called Goofy's Missing Mitten..and she also has a couple of little mittens laying around. She consistently brings us the book AND the mittens when she wants to be read to!

Now, my daughter doesn't talk very much, only about ten words....but she definitely communicates her point well enough! And she has been able to walk since she was 18 months old, but isn't yet. (Fine with me!) Simply because she is cautious and stubborn. However, she will stand up in the middle of the room by herself, and then take up to ten steps before dramatically plopping down to the floor!

As you daughter gets older and starts doing more, you will just be so incredibly proud of everything she DOES do, and the things she may not do become less important. Don't lower your expectations...when my daughter rolled over at two weeks I knew I didn't need to have lower expectations of her. And I haven't. I honestly believe she is doing so well because we all believe that she will. And I see a difference in her when she is around people who do not feel that way. We set goals every six months and her therapists always tell me I am being too optimistic...and it may be the day before we set new goals, but Ali ALWAYS meets them on time!

If you don't lower your expectations your daughter will surprise you. I also reccomend the book "Nobody's Perfect, Loving and Growing with Children with Special Needs" by Nancy Miller. You can get it at Amazon.com and the Book Common Threads as well, both are great books for where you are at right now.

[leylah]

THank-you, I will look for that book today. ANd thank-you for the reminder about expectations, I've actually been feeling guilty the past 2 days because I've been looking at the negative and I feel like besides being unfair to her, that she can actually feel it from me. I know my girl is smart, I can see it in her eyes, what I fear the most is how society will treat her/see her. I find myself wondering if all the baby girls in our neighborhood will befriend her or not, things like that.

Anyway, thank-you for replying.

[Mary_L.]

I can completely understand how you feel. I go through those ups and downs too, although not so much any more. (My son is now 5). My brother and SIL had a baby 7 months after we had Patrick and I remember how hard it was going to visit them at the hospital. Their ped came in and my SIL asked a couple of times if her baby was ok and the ped just kept saying he was perfect. I just wanted to burst into tears because that is what I wanted to hear when my baby was born(we didn't know about the Ds before hand either). I really do feel the first year and a half were the hardest for me and then I was just able to start looking at Patrick as a little boy and less as a little boy with Ds. Of course the Ds is always there, it's just that now it's just a part of him, not who he is.

Hang in there, the sad feelings should start to fade. As your daughter gets older and reaches more milestones you will be amazed at how proud you are of her because you will know how hard she had to work to acheive those milestones. Having a child with Ds has its hardships but I am now amazed at all the wonderful things it has brought to my life~I have met so many amazing people that I never would have met before, my other children are more empathetic and caring towards other children and people with disabiltites then I think they would have been otherwise, and Patrick takes such joy in life~he gets so happy over the small things that it makes me realize and appreciate what is really important.

I'd say try to visit your friend and her new baby. It will be hard at first but I think in the long run you will be happy you did. Please know that you are not alone in the feelings you are having and you can always email me or just come here when you need to talk.

Mary

[SuziF]

Leylah,
I know it will be hard at first, but be open to your friend. Don't turn away from her. You may find out that her daughter is one of the best things for your daughter being that they're close in age. My daughter who is 3 1/2 is lucky to have a friend that is just 5mths older than her & the daughter of friends.They've known each other since babyhood. Jessi has a rather protective nurturing stance she takes towards Meri. There have been a few spots when Meri has been a bit left behind~ like when Jessi was up & walking before her & Meri had to wait for Jessi & other children to come to her at the park.
I really hope that this relationship can cement a bond that will help Meri past some of the hurdles & conquer acceptance by her peers. Right now they're in the same preschool classroom.
They've sat on the sidelines together thru their older brother's soccer, baseball & football games~ hopefully someday soom they'll be teammates there or as cheerleaders.

Welcome!
Suzi

[Jackie]

Hi....for the most part I did really well accepting Emily and her disability.....BUT...your experience with your friend does ring a bell for me.............

A while after Emily was born...my best friend from childhood whom I dont see much as we live tons of miles apart....wrote me.....and said...she was celebrating her birthday by having another baby and since she was so close to 40 was happy the baby was born with no problems. Now...this is a very normal statement for someone to make...but not to your good friend whose baby has the very problem you are referring to!!!!

I remember not being happy for her at all...in fact thinking...well durn...I was not at the 'danger' age when I had Emily and here she is....and her baby is healthy and mine was not.............

Fortunately I dont carry grudges...LOL....and tried to readjust my thinking....but nonetheless it did happen...and it was upsetting to me...not that I would 'wish ' a disability on anyones baby.

And when my sister in law gave birth to her second child...and didnt seem too excited about having her...I also remember being upset...so I think its a normal feeling and just another way of letting out some of that grief that we all have from time to time.

Jackie mom to Emily 24

[MB]

Leylah,

You are a Christmas gift for me. I love talking about my journey with my son who is now 13 years old.

Loved the honesty in your post and I think it will be of great comfort to many parents who share your feelings.

I was so terribly disappointed when my son was born and immediately diagnosed with Ds. I have a sibling who is developmentally disabled and felt I had given up my childhood to her demands and now was going to hand over the rest of my life to my son. I was wrong.

In the beginning I felt like I was circling a black hole and it was beckoning me to fall in. The black hole represented giving into depression and just giving up. I had a husband, another child and this sweet, sweet little boy with Ds that needed me. So, I couldn't give up. I just couldn't imagine having these feelings of sadness, disappointment and being trapped for the rest of my life. Yet, I had a husband, another child and this sweet, sweet little boy that needed me. You notice I didn't repeat the Ds because I was simply falling in love with this little boy, not the little boy with Ds.

My husband was of great help because he told me to look at what I had in my arms - a baby that never cried, smiled all the time and that could easily be taken to any restaurant or movie. He told me to stop crying about things that simply had not happened. This baby did not have any medical conditions that needed immediate attention, hadn't been made fun of by anyone, did not and has not had leukemia etc.... My husband came home every evening, scooped him up and told him, "Daddy loves you." I realized this little boy saw disappointment on my face, not joy and delight like my husband's. I immediately changed my attitude and I do think it is one of the reasons he is doing so well today.

I tell mothers of newborns to expect three uncontrollable bouts of crying in public. Your friend having a healthy baby would be a perfect scenario to set you off.

Grief comes in waves. In the beginning, the waves crashed over me non-stop and I was drowning in them. As time wore on - weeks turned into months- the waves came further and further apart. I decided to stop sitting around waiting for the next wave and enjoy my time in the water between them. Life immediately got better.

My friends were all having babies. I realized right away and told them all, that I did not want their healthy babies, I wanted my baby to be healthy. I had to let them know that it was o.k. for them to delight in their children. I just asked them to be patient while I worked my way through my life altering disappointment of my son's disability. They were terrific about being patient with me and I worked very hard at being happy for them. It kept my friendships strong and 13 years later I am so grateful for all of them.

Thirteen years later, you have no idea how hard they now have to work through the fact that they have a household in hormonal turmoil and I'm sitting pretty with my sweet boy! They are having trouble being happy for my lifestyle and I am remembering to support them through these challenging years!

Your daughter will bring people into your family life that are of sound character, good heart and wonderful spirit. This is a blessing for anyone trying to raise typical children in this day and age. My other child recently graduated from high school. This kid was awarded the highest academic honors, the highest award given by the senior class and faculty for character, and was chosen by a panel to give the graduation address. Her address centered around the ideals her brother with Ds had taught her and how she was able to find these ideals in her graduating class.

Her college essay theme was about how her brother with Ds, who probably won't go to college, prepared her for the journey. While she was a fine student, she did not have perfect scores. She was awarded the highest academic scholarships offered by two of the colleges to which she applied. The only thing that set her apart was the essay. She had an excellent community service record, but did not play sports or hold any offices. I know this is a bit far down the road for you right now, but I want you to know you do not have to worry about the siblings being shortchanged. As long as they are as important to you as your daughter with Ds, they will be fine. As your daughter with Ds requires your son to set aside his needs for his sister, don't hestitate to set aside her needs for your son. He is as important as your daughter.

You said that being smart was your saving grace. I was not the smart one. I was the outgoing one. I was the prom queen. (Here's where all the old time Uno Massers will start having a heyday!) My son has a great social life. Granted, I have worked hard at creating social opportunities and we are absolutely delighted with all of his friends and his activities. This prom queen was never as popular as he is today.

My son was slated to attend the private college prep school. Instead, he is in the local public school so he can receive special educations services in an inclusive setting. I wouldn't give up the diverse friendships we have made through the public school system for the world. Keep reading.

Christmas should be a joyous time of year. This Christmas I have been stricken with a back injury and have been, basically, bedridden for four weeks. My son, the popular one, has a friend whose Dad is a neurosurgeon and a professor of neurosurgery and in charge of the spinal injury dept. at the huge university hospital near us. He delights in my son. No other neurosurgeon would see me before Jan/Feb. He saw me immediately and has put me on the road to recovery. Recovery includes physcial therapy. No problem, his other good friend's dad owns the best rehab clinic in town. I was given their top back specialist the same day. The mom drove me over, checked me in, took care of my son and brought dinner to the family. What would I have done without this kid with Ds?!!!! He saved Christmas!

Your joy is right there in your arms. She will teach what you need to know. She will force you to overcome any shyness as you advocate for her, she will teach you the peace and quiet of patience, she will give you innumerable reasons to celebrate. She is truly a miracle given to you in this season of miracles.

I encourage you to count the number of smiles and hugs you receive Christmas eve and Christmas day. Then ask yourself, "Did I receive as many as last year?"

God's speed.

MB

[Alice]

OMG, I love this threat!
Leylah (hope I got you name right), welcome!
I will not repeat what has already been said, but said very beautifully, thanks to all.
MB, you are a writer! Thank you even you've wrote not for me but it is very important for me too!

Leylah, I feel for you, I also had very hard time after learning that MY SON has DS and knowing that all our plans will never happen. If my best friend that time had a baby with out DS, I would feel the same as you now.

My son is 5 y/o now, and what I have realized that with every his new birthday, with every his new achievement, with every his new bad things done to our belongings (he broke lots of things in the house - as all little kids do and which is very normal for an energetic boy of his age) - pain feels less and less.
You pain is still very fresh, it'll go away I promise. I can not teach you how to take pain away, but I can tell you the best Doctor is the Time.
And keep in mind: even our kids have delays, they have achievements.
Hugs to you dear,
Alice

[MaggiesMom]

Hello and welcome back! I've been checked out for a while with school and such, so sorry I missed you coming on board. So glad you're here with us.

My SISTER had a healthy, gorgeous, vivacious, etc. etc. daughter 3 months after Maggie was born. Talk about resentment...whew baby!

First off, the day Maggie was born, my sister and her husband were totally freaked out. They were so caught up in "could this happen to our baby..." that it really ticked me off. Don't get me wrong, I understand why they were concerned. At the time, Maggie was just barely hanging on to life. But, still...

Later, as my niece achieved each milestone and did all that cute baby stuff, my sister would call and have to tell me all about it. Now this was her third child, so it wasn't new stuff around these parts! LOL But I could feel the hair stand on end each time she'd call and tell me some cutesy story.

It lasted about 8 months and then I got over it. Once Maggie got out of NICU and started being "just a baby", things got a lot better. Now, I hardly compare the two. They are good friends and play well together for 3 year olds. They are worlds apart in some things and side by side on others. Both are beautiful and talented in their own ways.

All that being said, I think it takes a while to "adjust" to life with DS. I think it's perfectly normal to feel what you're feeling and you shouldn't feel guilty about it. It takes time. Everything will work out. Just take one day at a time.

I have a friend who's daughter was born with DS 4 months after Maggie. My friend is still angry about her daughter having DS. I feel badly for her and wish I could help her change her perspective. But, I think it's something each person has to deal with individually.

Hope things go wonderfully for you and your family.

P.S. As always, I have to do my pubic service anouncement...have that baby's hearing checked by a certified audiologist every year. Maggie has hearing loss and testing has made a huge difference in her ability to hear well.

Take care.

Robin M

[alisonzmom]

Hi,

I'm so sorry you're having a rough time right now. In many ways I can relate to what you're feeling. We have very good friends who have a daughter who is 7weeks older than Alison. I can remember going to see them and their new baby about a month before Alison was born and having a hard time being happy for them - I knew before Alison was born that she would have DS. It wasn't so much that I was not happy for them and their beautiful healthy baby girl - but that I was feeling very sorry for myself and what I thought the future would hold for me and my baby. I too felt kind of guilty because there was that part of me that kept thinking why me, why not them? And up to that point I had thought that I had come to accept what the future had to hold for my soon to be born baby - but seeing them and their baby just set that emotional ( and hormonal) roller coaster into overdrive. Your daughter is still very young so I think that it's fairly normal for you to still feel like you're on an emotional roller coaster but honest, it does get better - the lows don't seem to be so low, everything starts to even out, except those incredible highs when they achieve some milestone!!! Alison is almost 21 months old now. She's trying very hard to stand on her own - our friends' little girl moves at nothing slower than a run, Alison is still babbling a blue streak - our friends' little girl is a non-stop chatterbox. Yes, it makes my heart ache at times to see the two of them together and realize that they are so close in age but so far apart developementally. It's always bittersweet when we get together them but it has gotton easier. Our friendship is too important to let anything get in the way.

Anyway, I'm starting to babble here! I just wanted to let you know that you're not alone. Try not to get too caught up in what age your daughter should be doing this thing or another. I try to remind myself that I have entered a new time zone - " The Alison Zone" - one where Alison will do the things every other kid does, but on her own time schedule! I think it was her PT who told me that it's not so important WHEN she does something but how well she does the things when she does do them - kind of helped to put things into perspective for me! I've also found that our friends' daughter is a great motivator for Alison - she crawled for the first time when Ella kind of walked away from her, must have decided she was not going to be left behind that time!

Hugs,
Barb

[MB]

Barb,

I love your reference to the "Alison Time Zone" what a great way to put developmental milestones in perspective.

MB

[Danielle]

Hi Leylah,

There are some wonderful responses here already so I won't be too long here but I did want you to know I, too, felt this sort of jealousy/sorry-for-myself-and-my-son thing for some time after Zane was born. One of my closest friends had a son four months before Zane was born and I could hardly stand to be around them for quite some time that first year or so.

All I know is this feeling DEFINITELY fades and is replaced by this intense, rare, incredible joy and love....it's hard to explain or describe, but down the road you'll know exactly what I'm talking about. Today, I feel like the luckiest person in the world to have my little guy in our lives....and I think almost everyone on this board would echo that sentiment, too.

The acceptance phase of grief takes an enormous amount of time and it does come in waves. Just know it's perfectly normal to feel the way you do right now....and that these feelings will absolutely pass in time.

Danielle

[leylah]

I really can't thank you all enough. It was so comforting to be able to type out those words and know that the people here would understand exactly what I was feeling. I have so many good people in my life, but none who have any personal experience with the kind of joy/heart ache that my daughter has brought me. I love her so fiercely and am so afraid for what her future holds for her - even though my rational brain says that I should be just as worried or even more worried for what the future holds for my son! It just feels like I can keep him safe longer, but that she will begin to be exposed to people's prejudices and ignorance so much sooner.

I know that these feelings of grief will fade (I know they have to!) and that it will be a painful process. I really just needed to hear it from people who have been there. Your replies have brought tears to my eyes and have helped me immeasurably. Thank-you.

[christie]

First, I want to say WELCOME to UNO ;D

Second, I want to Thank you for such an honest heartfelt post I personally believe that is the first step and you are well on your way

My boy just turned 12 and YES I will say it gets easier BUT in all honesty I can't say some of the feelings ever go away, they do seem to pop up from time to time. BUT I have learned that its OK to feel feelings. nooo feelings are wrong but they do change as the journey goes on, I can promise you that

Give yourself time and don't be tooo hard on yourself for feeling what you do at times is my suggestion.

Looking forward to hearing more bout you and yours

CC ~

[momofrussell]

Leylah, I can't offer you anything more then these wonderful moms have already said. I can't say I have felt EVERY feeling you have.. but getting it out and knowing we are here for you is the best part!!!!

I just wanted to say Welcome to Unomas and that we are here for you!!!!

A.