Feeling bummed

[ericnrosesmom]

I've been a little depressed lately. I'm so grateful for all the progress Eric has made, but it seems like there's still more he can't do than can do. At 2 1/2 he's about at a 1 or 1 1/2 year old level mentally. All our home nurses and dr's say he'll catch up eventually, and he has made tons of progress since coming home. More, in fact, than they said was even possible. I just keep wondering how long this will take and when he'll be totally "normal". He was trached for being vent dependent, but now only uses the vent at night. We had a sleep study last week that we'll have results of Thursday. How long did it take your kids to catch up? Or did they ever?

[JWorthington]

Sam is pretty much on target with the other kids in his class, both academically and in growth. Obviously, as he still has the trach, speech is a problem. I'm sure he will catch up

Julie x

[Myself]

Jen,

I sense your pain as I am right there hand-in-hand- along with you. I witness Gage being behind every day simply because his twin didn't have to go through what he did (which was an awful lot for a little guy at birth).

I can't offer you any answers but just know I am here.

Also remember they surprise us all at the most unexpected moments!!!

Lisa

[drct1245]

It's so hard to say... every kid moves at a different pace. Ayden's growth and development skyrocketed after he got off the vent (26 months) and then even more when he got out his trach (28 months) and was able to start speaking. At almost 3, he is getting close, but socially he still needs to catch up.

[Hope]

Shelby, too, at 3.5 years is a good year and a half (or more) behind in language and social maturity. She has made great progress, but not as fast as I'd hoped, once the trach came out. She is still not potty-trained, for example. *sigh* I really wonder if she'll be ready for school, even in a couple of years. So I know a little about how you feel. It's heartbreaking and depressing.
Hope

[cherienz]

"Welcome to Holland,

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. the Colosseum, Michaelangelo's David. the gondolas in Venice. You may even learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later the plane lands. The stewardess comes in and says "Welcome to Holland".

"HOLLAND" you say. "What do you mean, Holland? I signed up for italy. All my life I've dreamed of going to Italy.

But there's been a change of flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned.

And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland. "

- by Emily Pearl Kingsley

I love this quote, because if says a lot about how I feel. Mitch is 5 now and as parents we are just trying to decide whether he goes to mainstream or special school. It is very hard!!! Technically, there was no cognitive problem at birth, just a lot of delays due to 2 years in hospital and weakness due to his respiratory and physical condition. I try now to focus as much as possible on the positive, without comparing to his twin. But the gap has widened and then you go forward and then backward.... It is good to share how you feel, because it is not easy what we are all doing.
Lots of hugs Cherie

[babybear]

We're in the same situation. Gabriel was almost 'normal' before he was trached. He was rolling over, eating, and doing the other things normal five-month-olds do. He was very small, but that was it. Then, he was trached and everything changed. He had to have the trach because he wasn't breathing well and had upper airway obstruction, but he stopped rolling over, and became very cautious in his other movements. Then, in August, he developed another aspiration pneumonia and was taken off all oral feeds. Now, at 15 months, he can't sit up for more than 15 seconds unassisted, he's 100% g-tube fed, and can barely babble. Developmentally, he's at about the 3-4 month mark. It's so horrifying! I'm praying he can get the trach out soon and get back on track, but I'm not sure how long it will take. Sorry for the novel, but I wanted to let you know that you're not alone. It sounds like Eric has made amazing progress, so there's no reason to think he won't continue to improve at a fast rate. I hope Gabriel can do that well!

[Alethia]

We had a meeting for Angus today regarding his starting school after the summer. Physically he is behind because of the vent, but his social interaction with adults and children is normal, he is cognitively classed as "bright" by the pre-school teacher, he can walk, talk (quietly) appropriately for his age. He can get down onto the floor and back up again. He can climb up onto chairs (he's small for his age because of his dwarfism - about 2 year old size), and he will move a step stool around to enable him to get at things higher up like door handles. I'd say that he caught up around the age of 3 1/2. He was in hospital for 18 months and was very poorly for about 1/2 that time. They do get there in the end, but it's not en even progression and it's normal for it to get to you at times. If you can, look on their progress more than compare them with others - then you'll realise quite how far they've come.

[Nate's Ma]

Just wanted to give you a different perspective. Nate has Down Syndrome and also is delayed. The difference between your little guy and with Nate is your little guy will eventually catch up. Nate probably won't. I have learned to live in the here and now in regards to his development and stop wishing for what he will do. We celebrate his milestones everyday. I'm still learning to live in the here and now with his trach. All the awesome members of this board are reinforcing that to me. So hopefully I can help you put it all in perspective when it comes to development.

I wish Nate would "catch up" some day, but the reality of it is that he probably never will. I'm finally ok with that.... now just getting ok with this darn trach.... well that's my next mountain to climb.

[Melisande]

We don't always know where our little ones will end up eventually. Hope is a very important thing to keep. Some things come to light developmentally over time. Donovan, who is almost 6 years old now, maintained a 50% global delay for a long, long time. He is finally starting to make some gains developmentally, but we also got a diagnosis of autism along the way. Every kid is so different, but we keep pushing for Donovan so that he can be as independent as possible one day. Everything in balance, which isn't easy to accept for us parents. When our kids are on vents, lots of their energy is spent just staying alive. As they get older and more stable, you may begin to see a good baseline picture.