I think I go through this every year at this time because my triplets were born 7 years ago tomorrow (June 29th), does anyone else every feel like this, is this a normal thing? For some reason, I am feeling overwhelmed by our future. I guess not knowing what is in store for us regarding Katie. For instance, we went on a family bike ride this weekend. Katie is still unable to peddle a bike of her own so we have her in one of those bike trailer things. She is still tiny (around 38 lbs) so this works very well for now. I keep on thinking, are we going to have to give this up when she gets bigger if she is unable to master her own bike? I know it sounds selfish but it's just these simple every day things, that most people take for granted. I also worry about what is it going to be like when our children are adults. Is Katie going to be able to function independently? semi-independently? What is going to happen to her when she reaches high school age? Right now, her peers in her "regular" classroom ADORE her, but I know how cruel kids can get, especially when they turn middle school/high school age? I have a friend who has a daughter in special ed in high school and a classmate attempted to rape her! Katie is sooooo trusting of people and has such a rosy outlook that I am soooo afraid she is going to be taken advantage of. We can only protect our children to a certain extent and the thought of something like that happening to her just....oh, I can't even think about that!I have talked to DH about this, of course, and his attitude is "one day at a time, dear". I wish I could think like him right now (he is soooo level headed and calm---it is actually maddening at times, lol), but I am just a worrier by nature, I guess.
I LOVE Katie so much and I wouldn't trade her for a non-Down syndrome Katie, but I can't help but feel like we have been cheated sometimes. It makes me feel sick to my stomach to even feel that way, but I cannot help it. No one (friends, family) understands the way I am feeling right now. I feel as if I am being brushed off with a "it could be worse" type attitude. Yes, I know it could be worse, but that's not helping me feel better right now. That totally drives me bonkers and I feel as if sometimes I am "brushing" people off. It's like I really don't "fit" anywhere. I am an HOM Mom---it's hard for singleton Mom's to relate to me----I have a child with special needs---hard for HOM Mom's w/out a child with spec needs to relate to me--hard for singleton spec needs Mom's to relate because I have HOM!!! I do not have anyone in my area in a similar situation. Okay, now I am whining.
I do not feel this way all the time, it just seems that everytime we hit another yearly milestone I go through this, right up until their due date (August). I feel like the most selfish person on the face of the earth right now because yes, I have been blessed with four beautiful children who I adore! They are well-behaved children, affectionate and seem to be well-adjusted. I have a wonderful DH who is an awesome father and loves me (at least that's my impression,lol!)I feel terrible for being upset about this!
Has anyone else felt like this ever?
Thank you for letting me vent, I do feel a little better by getting this out on paper. Maybe keeping a journal could provide me with a sense of peace?
Gina
SAHM to Spunky 7/10/94
Mojo 6/29/97
RinRin 6/29/97
Kakiecakes 6/29/97(DS)
"I looked on child rearing not only as a work of love and duty but as a profession that was fully as interesting and challenging as any honorable profession in the world and one that demanded the best that I could bring to it." Rose Kennedy

trpsn1
SAHM to Spunky
Mojo
RinRin
Bugaboo
"I looked on child rearing not only as a work of love and duty but as a profession that was fully as interesting and challenging as any honorable profession in the world and one t

Gina,
I could have written your post! my trio will be 2 next month. It has been easy for me to think my Charles was "just behind the other two" for so many months and now that we have his diagnosis of autism it has made me step back and think so much about our future. I also feel like when we got the diagnosis i felt like we had hit rock bottom and now we would only go up, but even in the past few weeks it seems like he is getting harder and harder to get through to every day. i think "why charles? why not the kid next door? why not my friend's kids?" etc etc etc. i just think why does a little soul like charles who is so sweet and happy have to face a challenge he doesn't even know the magnitude of??!
I have felt more alone the past few weeks than ever in my life. we live in a state with NO family and I have made really only one good friend who has ONE 15 month old daughter who is bright eyed and interacts with everyone and is already saying a few words--we are great friends but as far as kids go we don't have a ton in common! ugh. its hard to hear her talking about being tired because she worked out and goes swimming! i wish that was why i felt tired!
Anyway, i think its hard to watch "triplets" be on such different timetables and i hope that all three of my kiddos will be able to do things together, like school, college, get married, etc.
My DH sounds like yours. he keeps telling me "this is just the plan for charles" and he tells me "one day at a time" all the time! but its hard when they are your babies and you want them to be the very best they can be. the long term task seems insurmountable to me, and it weighs heavily on me.

anyway, thanks for letting me have my own pity party on your thread!
its good to know that i'm not the only HOM with a special needs child who has these emotions. makes me feel like i MIGHT be semi normal. I think you sound like a great mom who is very in tuned with her child's individual needs.

Meg

I understand exactly how you are feeling. My triplets are now 6 and Noah has Cerebral Palsy. I have a tough time around their birthday each year -- last year when they turned 5 the girls got bikes. I remember crying all the way home because there weren't 3 bikes in the back of the van. This year the girls got roller blades and once again there are only 2 pairs :0(

It's tough relating to the other triplet moms. In the beginning everyone had the same problems and had 3 babies/toddlers to take care of. But now everyone else has independent 6 year olds - I still have a child who needs a lot of help.

But like you, I can't imagine life any other way. Noah wouldn't be Noah without his CP. He's a total blessing to everyone who meets him but I still worry about his future.

Big Hug!

Lori --
Mom to Zac (9/91) and triplets Noah, Karissa & Jazmine (5/98 at 27 weeks)

Lori --
Mom to Zac (9/91) and triplets Noah, Karissa & Jazmine (5/98 at 27 weeks)

You are NOT nasty and I don't think it would be normal if you weren't feeling what you do. I also know how you feel about not really 'fitting in anywhere'.
I can relate to how you all are feeling too :'( . It breaks my heart to think about all the uncertainty in Braden's future and how it has profoundly affected all of us. Today he had an ultrasound in the morning then we had to go home get a urine sample for some specialized tests and take it back to the hospital and get his latest blood test results, go to the eye doctor and then go to physical therapy. So my kids had another day of hospital/dr/therapy visits and 'only 15 min of fun today'.
All things we have to be do all over town for all this crap and all the expenses involved leave no $$ for camps/classes/lessons or normal kid fun stuff .
All the worries about medical issues are taking a toll on all of us too. My husband was feeling really sick this afternoon and was in our room all evening throwing up because of a migraine. I was putting the kids to bed and one of my DS's was so worried about him that he said 'I'm worried that dad is dead because I haven't heard a thing from him all night' :'(
My mom has said several times 'I don't know how long Braden will be with us' and it makes me want to SCREAM !!!!!! STOP THINKING THAT AND STOP SAYING THAT !!!!!!!!

I met a mom in the grocery store yesterday and it put things into perspective for me. She had triplets 15 yrs ago, all three of them had NEC, after being given formula against her wishes, and one of them died from it. Her surviving triplets both have celiac disease (like my kids do). I was reminded that every day with Braden and each of my kids is a blessing and that God will not give me more than I can handle. I was also reminded that I have an OBLIGATION to educate others about some of the potentially disasterous consequences for preemies when medical staff is uneducated on feeding issues. I have renewed my resolve to start an education campaign to help prevent others from suffering what we have.

Lorraine

Reach for the heart of God and not just His hands.
Organ donation saves lives!
Life happens when love is given.


http://www.caringbridge.org/visit/bradenwild

"All things we have to be do all over town for all this crap and all the expenses involved leave no $$ for camps/classes/lessons or normal kid fun stuff".
yikes !!! look what happens to my writing abilities at 2 am when I am stressed I am usually doing my research online late at night.

Lorraine

Reach for the heart of God and not just His hands.
Organ donation saves lives!
Life happens when love is given.


http://www.caringbridge.org/visit/bradenwild

You all have no idea how much better I feel after reading your responses! I feel so alone sometimes! Dh is great but his nature is pretty laid back and he doesn't think with his heart like I do---he's very practical. I, of course, worry about EVERYTHING, especially when it comes to the kids. They are my life and I don't know what I would do without them!
It is a comforting feeling knowing that I am not alone in my worries, although my heart goes out to all of you who share my similar issues.
I do feel very blessed to have Katie in my life and I embrace the joy and blessings that she has brought to this family and others around us. But it is difficult sometimes seeing the other two hit age appropriate milestones and Katie lagging behind. When the triplets turned four we bought them their first bikes. I felt so sad that Katie wasn't getting one and it really depressed me just thinking about it. She LOVES animals and my oldest dd came up with the idea of getting her a pet. We decided to get her a parakeet and she loves him! It seems that this stupid bird knows that he is Katie's and when she walks by his cage he goes bonkers. He also doesn't mind when Katie holds him on her finger, he nips at the other kids, lol. This year, Mitch and Erin have grown out of their bikes and we bought them each a new one. Katie is still in a toddler bed, so we are going tommorow night to let her pick out a new "big girl" bed. The parakeet and the new "big girl" bed have been Godsends for me, pretty selfish I know, but I feel so bad that she is somehow being cheated out of fun birthday presents, it just breaks my heart.
Anyway, I am starting to babble again (way too much caffeine this am---not much sleep last night as my Uncle passed away early this morning-on the triplets birthday, major downer). Thank you all so much for replying to my post, it has definately helped and I feel sooo much better! For some reason, writing my emotions and feelings out feels very therapeutic and I think that I am going to start keeping a journal.
God Bless you all!!!I wish that we all lived close by so that we could meet for coffee or better yet MARGARITAS!

Gina
SAHM to Spunky 7/10/94
Mojo 6/29/97
RinRin 6/29/97
Kakiecakes 6/29/97(DS)
"I looked on child rearing not only as a work of love and duty but as a profession that was fully as interesting and challenging as any honorable profession in the world and one that demanded the best that I could bring to it." Rose Kennedy

trpsn1
SAHM to Spunky
Mojo
RinRin
Bugaboo
"I looked on child rearing not only as a work of love and duty but as a profession that was fully as interesting and challenging as any honorable profession in the world and one t

Gina
Happy Birthday to your kids !!!! Sorry about your uncle. I think starting a journal would be therapeutic for us all. I would love to meet you for coffee (my drug of choice ) margarittas are not part of my gluten free diet though .

Lorraine

Reach for the heart of God and not just His hands.
Organ donation saves lives!
Life happens when love is given.


http://www.caringbridge.org/visit/bradenwild

WOW, i know i am late in responding to this post, but i have to post and say THANK YOU for posting it. just knowing that i am not the only one out there that feels this way is so reassuring. as i sit here crying uncontrollably, i have such mixed emotions. i worry so much about the future too, but the biggest thing i struggle with right now is feeling guilty about wanting things to be easier for my bailey. i love him the way he is is, but in my heart i SO wish he didnt have to go through the rest of his life autistic. but then i feel guilty about feeling this way....is that normal? its so hard to have three same age siblings with one on a completely different level.
ugh, i better go dry my eyes, its time to make dinner and bailey is standing on the kitchen counter....again!

julia, gbb, 3years and g, 17 years

julia, gbb, 19 months and g, 16 years

Hi Gina! I know exactly how you feel. I worry about my little Luke. He's my 3 year old (not one of the trips). He has DS, also. Although I have to admit...I used to worry about his future a lot more when he was first born than I do now. I love him more life itself. But every once in a while I think about what his future holds....school...work...where he'll live??? I think we have this ideal scenario as parents watching our 18-year old children leaving home and going off to college...later getting married...having children..etc...But what does the future hold for our sweet children? It's just not fair, is it? I want so badly for him to be able to experience all that life has to offer, but is that possible? We have really tried to treat him no differently (as much as possible anyway) than we would if he did not have DS. But unfortunately not all people in this world feel the same. I worry about how he will be treated in school. Will he feel bad when he's not invited to parties or he doesn't have a date for the prom? I want to protect him from the bullies who treat him bad or make fun of him. But I know that's just not possible. Well, I'm rambling...and I'm sorry I went on and on...but I just wanted you to know that you are not alone in your feelings. And by the way...that coffee (or margaritas) sounds great!! It would be so great to get together and have friends who understand how it feels. I'm in Ohio...if anyone is close!!

Christina
Luke 6/11/01
Sarah,Olivia,Rachel-34 weekers
4/30/03
http://lilypie.com>
http://lilypie.com>

Hi Christina,
Thank you for your response! Oh, yes, everything that you have written in your post is so similar with my world right now, it is almost uncanny!
In regards to Bday party invitations, I have a story to share. One day I received what looked like a birthday party invitation in the mail. Without looking at who it was for, I put it on the desk, thinking, oh boy another bday party for Mitch or Erin. Well, later in the day, I looked at it and it had Katie's name on it. I assumed it was from a child in her special ed class. I was wrong, it was from a little boy from her kindergarten class (she is mainstreamed half days). I don't think I stopped crying for a whole hour! That touched me deeper than anything I have ever experienced. As soon as I had myself under control, lol, I called the little boys mother to let her know that Katie would be there (I would have moved heaven and earth to make sure she would get there). The mother let me know that her son was insistant that Katie was to be invited, because Katie was his best friend! He was only allowed to invite 5 children to his party and my baby was included! I had all I could do to not totally break down and bawl like a baby on the phone. Anyway, Katie went (I went along with her) and she had a blast! The other kids at the party doted on her like she was the Queen of England and asked several times if Katie could come to their own houses to play. It was one of the BEST days of my life. I hope and pray that she is treated as one of her regular peers throughout her school career, but I cannot help but feel that that is just wishful thinking? Time will tell. I do hear from all of her school therapists, her sp ed teacher and other teachers that these kids (Downs) are usually pretty popular because of their sweet disposition. She is definately a people magnet and I am just amazed at all the people in our community that know her. Everytime we go to the grocery story I hear, "Hey, there's Katie! Hi Katie!" or "That's Katie's Mom!" Wow! I hope things like that do not change!
Anyway, I have rambled on again! I let loose tonight and had a beer in honor of the triplets birthday, I am feeling pretty "relaxed" right now. It has been a challenging day to say the least and I am really looking forward to the extended weekend. Ohio, huh, not too far from Wisconsin! LOL
Gina
SAHM to Spunky 7/10/94
Mojo 6/29/97
RinRin 6/29/97
Kakiecakes 6/29/97(DS)
"I looked on child rearing not only as a work of love and duty but as a profession that was fully as interesting and challenging as any honorable profession in the world and one that demanded the best that I could bring to it." Rose Kennedy

trpsn1
SAHM to Spunky
Mojo
RinRin
Bugaboo
"I looked on child rearing not only as a work of love and duty but as a profession that was fully as interesting and challenging as any honorable profession in the world and one t

LOL! I'm right around the corner in Texas! I'd love to have a margarita!
Happy Birthday to your trips!
Gina, I have the same worries/fears/concerns for Henry. He just turned 17 months on Sunday. He has Down Syndrome and so far he's not lagging developmentally too much but I am just beginning to ADMIT there are lags...
I am terrified about how his peers will treat him when he's older. I'm hoping his big sisters and brother will be very protective of him and they are all so close in age they will be in school together but I know I can't completely protect him (or his siblings) from other people's ignorance and cruelty. This will sound so bad; I don't know how else to say it though, but when I learned that Henry would most likely be sterile (99% of boys with DS are sterile), I was relieved. My first thought was "no one will ever be able to accuse him of rape or unwanted pregnancies." And I was relieved that he wasn't a girl b/c of those worries.
I'm trying hard to treat him like the others children and to foster their relationships and to have them grow up thinking, "well, doesn't everyone have a sibling like Henry?" I want the whole situation to be completely normal to them-I don't want any of my children-Henry included-to feel "different".
But I agree with everyone else-he wouldn't be "Henry" w/o the D.S. and if there were suddenly a "cure" for it-I wouldn't want it.

Korrie~
^i^B/G/G 24 w 3d,1/17/00
B 10/31/01
B 1/27/03

<a href="http://lilypie.com"><img src="" alt="Lilypie Kids birthday Ticker" border="0" /></a>

Gina, I had a house full of high-school kids when I read your post last night, so, over pizza, I asked them whether older kids are cruel to kids with Down Syndrome.

The unanimous answer was "no." Actually, it was "h*ll, no!" These kids said that there were several kids with Down Syndrome in their jr. high and high school. No one ever picked on them. First, the kids who tend to get teased are those who are "annoying" (chatterboxes and know-it-alls). Second, the schools have strict bullying rules (WA state). Third, everyone agreed that anyone who would tease a Down Syndrome kid would be considered a "jerk." (The girls would be "totally grossed out" by any guy who would do that.)

All of these kids knew kids with Down Syndrome and considered them to be sweet and friendly. They weren't among their friends, but they certainly had kind words for them.

One of the girls -- very gifted -- mentioned that she thought that special segregated classes for were great for kids with Down Syndrome for the same reason that they're great for gifted kids. Everyone wants to be with their peers. She said that the kids with Down Syndrome tend to pal around with each other. One of the little girls that works in our local Starbucks has Down Syndrome. She graduated this year and she went to prom with a classmate with Down Syndrome. They looked great and had a ball.

Hardly a scientific sample, but although I've heard how cruel kids can be, I've seen this cruelty reserved for their siblings and close peers, not for kids with any real problems.

Hope this helps,
~~ Jen

Auntie Jen
Mom to 3 teens <sigh>
Aunt to bbg triplets 10/30/03