Most difficult times turned victories?

[jelanismom]

Hi all,

After reading laura's article, it opened my mind to the possibility that I'm forging full speed ahead without taking time for myself.
Maybe I've been living in denial. Maybe I try to be the best mom and forget to take a good hard look at reality. Or is it better that I don't? I just try to remember what a nurse told me when I was sad and tearful by my son's incubator. She said that I need to be strong for my son because he can "feel what I am feeling". I took this to heart and never again felt sad for my son. What child would have a chance at life if the parent felt sad for him/her? So I just spent the past 5 years looking for the beautiful and holding onto the positives.

I'm just wondering how the past years have been difficult ...I'm asking because these past 5 years have been dificult for me but I try to keep my head up. I've been psyching myself out so as NOT to feel sorrow, not to look too far into the future ...as we can't even be sure of tomorrow.

What moments have been the most difficult in your life as a parent with a child with Ds? What have you overcome to be able to say "I did it" or "we did it" and you're stronger because of it?
What setbacks actually opened doors to being a better you?

I'll post back with my own...just want to hear yours first!

[victoriasdad]

wow, interesting question, im have to give it some thought,

thank you im always up for some introspection

[jelanismom]

Ok I go first...lol

#1 Surgery
I never had surgery myself so just the thought of my baby having to go through it almost gave me a nervous breakdown!
But the happy thing is of course that he made it through the surgeries and the nicu and I now know more about medical procedures and terminolgy then a first year med student!

#2
Having my own son with special needs not only opened my heart to others with disabilities that I never bothered to give thought to before (sorry to say) but also has made me think of that saying "can't judge a book by it's cover"...I feel this way about disabilities...can't judge a person by his/her disability...and my son never ceases to amaze me.

#3
From the very beginning in Early Intervention I was consumed with how my son needed continuous therapies (still does)...OT,PT,ST...and now Adaptive PE. and I used to call to the therapists if they missed a day because I wanted them to do a make-up day. I was so worried because my son didn't sit till he was 2 and didn't walk till he was 4! So I really should have given more time to time and realize that all the therapy in the world can't change my son's timetable for milestones.

#4
I've met so many people I otherwise would never have met ...I feel less alone, I've made some good friends with those who have a son or daughter w/Ds.

#5
Patience really is a virtue and I never had it. I had to grow patience once my son was born and up till this day I have a long way to go...but I've made progress. And I don't take much for granted like I used to. I value the little things in life.

#6
I'm more organized then ever in my life because frankly I don't have a choice...with all his medical and behavioral issues I can't overlook anything.

#7
Because of my son I have more understanding, compassion, empathy. I have a bigger heart...and more patience. I'm less worried about what others think...and more worried how my son thinks and how to prepare him for his future.



There's so much more, but I'm tired and need to go to sleep!

[Chris]

The worst ~

Sarah got extremely ill with heart failure when she was a baby. I remember holding her and realizing that she was dying. Of course, I knew she would soon have surgery but I knew without it she probably wouldn't survive until Christmas. My husband and I took turns holding her all day and all night. She was struggling for every breath and would sweat through her clothes and ours. She was so skinny her little hip bones were sticking out. Finally, the day came for her surgery. Handing her over to the anethesiologist was the hardest and most heartbreaking thing I have ever had to do.


Overcoming ~

Just getting Sarah through the heart surgery and teaching her how to eat again was a major victory. We were finally able to just enjoy our baby. I think when you have a child who was so ill, it makes you appreciate all the little victories. I can honestly say we have savored Sarah daily. We are stronger because we appreciate how precious life is.

Chris

[elizabethsmom]

The worst:
Turning my infant over to the anesthesiologist prior to her open heart!!! I have never had to do anything that difficult in my entire life! Everyone knows there are risks involved with any surgery, but Joby and I were both nervous (scared to death) about having our child put on by-pass and her not coming off. O.K., maybe I was more scared and Joby had more faith, I'm not sure, but I know I was so scared that my husband and my dad later told me that they asked for her 3 times before I let them take her from my arms. I was just so terrified that I wouldn't see her again! (of course, she did well and is sitting here punching keys on my keyboard as I type)

The positive:
I rarely take my kids for granted. I think I truly tried to enjoy all of my older kids as they were growing up. But, having 3 within 3 years of each other and being fairly young myself, I'm sure there were times when I got snippy or exasperated when I could have let it roll. I do try to enjoy everything with them now! And I can count on one hand how many times I've gotten that irritated with Elizabeth (so far)...nope on one finger....nope forget it, that was her dad I was irritated with, not her! hahaha Just kidding. But seriously, I do try to let things roll with the kids as much as I can. And I try to never take them for granted...someday they will be grown and gone, but we had a shock when Elizabeth was born and we thought that we could lose her so much earlier and sadder. Sorry I rambled so much, difficult with E sitting here helping me. But, my lesson: PATIENCE AND APPRECIATION OF MY KIDS while we have them.

[liasmom]

My most difficult time was when Lia was diagnosed with Leukemia. She had high-risk ALL and gave her a 55% chance of a cure. The treatment is 2 1/2 years of chemo- and drs who were 120 miles away. The worst was watching her suffer and not be able to tell us what was wrong. Like when she was on decadron the first 40 days-she would scream all day and all night long. It was extremely hard on our marriage, 5 yr old son and finances. She was hospitalized 45 of the first 60 days (out of town). Twice I was certain she would die. I hated not knowing where I would be the next day for sure, depending on what happened with her.
So what did it teach me? A) Down Syndrome is like freckles, compared to Cancer. And B) Take one day at a time and enjoy the life you have. Nancy

[elizabethsmom]

Oh my gosh Nancy! How old was Lia? Did she do well? My heart just stopped when I read your post!

[liasmom]

Lia was 19 months old. Leukemia is more common in our kids then the general population. The treatment is what is so hard but without it, they would die. Lia's white blood count was so high that it put her in the high risk category- so instead of getting one or two chemos at a time- she would get three or four. It's hard to talk about without crying.
There are other kids here who have had it. Lexi is just finishing her treatment I think.
The best part of Leukemia= MAKE A WISH> we went to Florida. Nancy

[Emilysmom]

I've been hesitant to even add this, because Emily has never had any serious illnesses or surgeries and I can't begin to imagine how hard that has been for all of you!!!!! She did have intestinal surgery at 24 hours old, but I was very certain (not sure why.......just KNEW) that she'd be fine, and it wasn't anything like cardiac surgery.

So, I tried to think of times when I have been totally distraught, upset, tearful about something with Em. And honestly......one of the worst things for me was her transition from her K-8 school and into the high school. It was by far the hardest things; partly because SHE was so resistant to going to the high school, ("Mom, WHY are you doing this to me"?) but also because I knew that I'd have less "control" over her environment than ever before.......I was downright scared that people might not be good to her, that she might not continue to grow, all sorts of fears! That school is HUGE!!! But, I have found that she has made more friends at the high school than ever before, she is EAGER to go to school each day, and there are some amazing teachers/assistants/and even principals at the high school level who have been happy to make things go well for her. I have to just keep remembering this when I begin to have concerns for her farther on down the line.

[Kristin]

The worst
Formiddable fours! Terrible twos were a breeze. Four was defiance, physically combative, and not potty trained!

Still stubborn about some things.

Took until age 8 to potty train...still forgets to go sometimes (Don't anyone give up!)

We've done pretty well with the combative issues...communication helped and training Mom & Dad how to respond.

This last week home from school is the first time I haven't been ready to send her back to school...so it does get better. She's finally getting more independent! And I'm learning to ride out the next adventure!