Saturday, October 06, 2007

Full Circle

Sometimes, I get a little depressed reading blogs. It was kind of fascinating in the beginning because most of the blogs out there, were physician blogs, at least when I started. I was the only special needs blog, at least in the group. Sure, there were patients with chronic illnesses but I was the only one with a special needs child. In the early days, I’d submit a post every Tuesday to the Grand Rounds, and I always kind of felt like the odd man out, like where should we put Dream Mom this week, however my numbers always grew, so I figured I was doing something right.

The problem isn’t with the blogs really. I like reading the pediatric ones and I especially like seeing the kids grow up and do new things. It’s nice to see how some things have changed since Dear Son was small and on the other hand, a little depressing to see how much hasn’t changed and that parents are still trying to find answers to the same questions I had fifteen years ago.

For a while, when I read the blogs, it was a kind of relief, like, “Wow, I am glad those days are over.” But I think that would be expected by any mother my age looking at other new moms. I can also remember thinking about how trying those early years were, at least for me, always wondering if I was doing the right thing or enough of the “right” thing so that Dear Son could be all he could be. I was so afraid of the “what if's” as in, “What if he doesn’t walk?”, as if that would be the end of the world. My thinking on that day was how nice it was that I was beyond that now, and that Dear Son is who he is, and it doesn’t matter what he can or can not do because we have both grown up together. He is a charming, delightful teenager and his disabilities don’t seem to matter in terms of who he is but rather, it’s more wishful thinking on my part, that I wished he could do things, to make his life easier and I guess so he’d be happier. I have no idea if he would be happier but I would be being able to do things for yourself would be nice and not have your Mom doing these things would be even better.

But this week I was reading the blogs and it hit me. Dear Son is never going to do anything else, meaning, there isn’t anything to look forward to anymore. I mean really, his days of walking are over. His days of rolling over are pretty much done. His days of standing are over. His days of eating are over. As the other mothers are anxiously awaiting for the days their special needs sons and daughters are going to do something, well, what am I waiting for?

The last few times Dear Son has been in the hospital, I am visited on the first day of every admission by one of the general pediatric attending physicians. It’s usually at the end of the day and when I least expect it. They’ll come into the room and find a seat on the couch and I know “the conversation” is coming. It sucks. The conversation they have with me know goes something like this, “We have read Dear Son’s history and blah, blah, blah and we want to know how you are handling this situation.” What they really mean is, “Where are you now that you know your kid is never getting any better.” God, I hate this conversation. I look them in the eye and tell them very matter of fact that, “It is what it is. I love my Dear Son and want him to be happy. We live every day to the fullest that we can and when the time comes that he is gone, I will know that I have done everything I can to make sure he had a good life.” I elaborate a little bit in there but I try to just be honest and direct.

But I think about that now and I wonder if it’s really enough. When Dear Son was very small, I used to think about him and the fact that he never hit any milestones and I had nothing to write in that baby book. I wrote the post, “Don’t Hate Me Because I am Beautiful” because I described where I was at that very time when he could do absolutely nothing. Back then, I looked at him and I saw that he was beautiful and that’s what I held on to.

And now, fifteen years later, we have come full circle. We are back to the beginning and I am asking myself the same question, “What do I have?” I thought about it a lot these last few days. I don’t know what I have but maybe, I need to just love him for who he is, not what he didn’t become. I guess in the end, none of that really matters, or maybe it never did.


poppyq said...

Dream mom, your son is lucky to have you and all your love. He's a lucky boy, and I admire your patience and courage.

Michelle said...

DM, I think that what you are experiencing is sort of...normal? Believe it or not, parents of typical kids go through a similar phase. Like...ok, they're grown...they arent gonna be a rocket scientist, no doctors, not a lawyer....sigh...did I DO this well enough?

I understand that your little moment is different, because the measuring tools are different. are measuring the physical. And even though physically his milestones are done being hit, emotionally and spiritually you both grow every day.

I think the truest measure of love is doing things that DONT have results. Loving just because you do, teaching and guiding without any end result. It is the truest test of unconditional love, when you are no longer being "paid" in gain. is it enough? I know it is.

I know that even though he is never going to gain any more ability physically, his mind is in there, his heart is in there. And he will gain in love, he will gain in trust.

I know this might be none of my business, but are you a religious person? Maybe you will find comfort in reading him childrens Bible stories, and growing his faith? I think that many of us live our lives not knowing really that there is an "end" to our children, that one day they will die, and we want them to be prepared. You, in a weird way, have the gift of knowing that the day will be sooner for him, that it is marching forward all the time. You can give him the gift of faith, give him the power of being close to God. He still has room for growth as a human being, even if it isnt physical and you may never know if he took anything from it.

catherine said...

We still have far to go I know with my boy. But I do think that initially one of the hardest parts was the grieving the what I hoped for him (e.g., be a superstar LSU baseball player winning the college championships), seems stupid now. We go along now with hard spots and not as hard spots, and it's still hard to see others who are working through the process of what he can and can't do and the sad look in their eye and even still the denial (masked with good positive intentions).

Anyway, I enjoyed this post. I think you are a very gifted writer/story teller, and I always enjoy your honesty, even if you make me cry sometimes :)

Karen said...

Hey Dream Mom, this post brought tears to my eyes. Very poignant. You have handled your hardships with dignity and grace. Not to say there haven't been times you screamed and cried or ended up ashamed at something, but overall, in the big picture, you have done an amazing job. Like I said in my recent post, you might talk about some of the hardships, but you always, always, always, make it clear how much you love your son. And it shows. It's not one of those "OMG LIFE IS HARD OMG OMG OMG BUT OH BTW I LOVE MY SON". It's more subtle. But also more sincere.

I didn't realize how far back your blogging roots went, or think about the fact parents with special needs blogs are a new phenom? I can see how it would be frustrating to watch people experience the same problems as fifteen years ago. Unfortunately, a lot of problems are like that. Humans don't learn very quickly, it seems.

I wanted to make a comment about what you have now to look forward to in milestones, and I think you answered your own questions. You can look continue to look forward to your son's charming and sweet nature. You can look forward to his beauty. You can look forward to his laughter. You can look forward to changing other people's lives and perspectives by sharing your own story.

In formal conclusion, I would just like to say you are AWESOME and you ROCK :)

Jodi said...

This is so meaningful, I hope you will submit it to the next Disability Blog Carnival which is about "milestones." Also, I've tagged you on my blog today:

sensoryslp said...

Dream Mom, once again your post is so poignant. Your strength and devotion is very inspiring. I can't begin to imagine how difficult it must be at times to know that your son's life is limited. However, the way you embrace each day is truly inspiring.

Mom Of Thomas said...

Dream Mom,
Wow. This post really hit hard as my son is just 4.5 and really is at the beginning of his journey, as am I. I still hold onto the hope that there will be that next accomplishment, never having given thought that there might come a day when there will be no next accomplishment. Now I know that I should hold onto these moments as cherish them even more than I already do.

Thank you for sharing this post with your readers. Sometimes we have to have our eyes opened to things that we may not want to see. But at least this way we are prepared that this might be an eventuality we too will face. And because of you we will be better prepared to deal with it.

Casdok said...

No none of it does matter.

Anonymous said...

Man...your honesty is amazing.You and DS are a gift to each other and how fortunate you both are.We are also fortunate for you sharing your world with us.Thank you for that.

Penny L. Richards said...

Yes, yes, yes, yes, yes. Thank you. Your answer to "the conversation" is very much like mine. Glad to know I'm on the right track... ;)

Kathryn said...

Dream Mom, Beautiful post. Dear Son is so lucky to have you. Your love for him is so unwaivering. When Ellie was little little and couldn't respond or move or do anything I do know that she felt my love for her. I have no doubt that it was really important for her that it sustained her. And you have so much love for your boy. Some people never feel love like that ever.

Baby Island said...

Dream Mom, I am reading your post after seeing a link on Jodi's Blog Reimer Reason.

Those are some very powerful thoughts. I admire the strength you have (no, not the physical kind). You inspire me.

Mom of Three

Anonymous said...

Dream Mom, I enjoy your posts, because we are experiencing so much of the same things. We have also come almost full circle to the point of hoping our teen will regain some of the skills he lost years ago...probably won't happen. We pushed so much the first few years to gain skills we never thought he would have only to lose them all with just one illness or one surgery. He was pushed in early intervention to the point of crying nearly every day, but we were told it was all for his own that he might have a better life. I don't regret that. He did progress until...seizures set in, surgeries that we were told would make him better made him worse instead, and neurological diagnoses that should not have been missed somehow were. He was at his best at around 5 years old -- been downhill physically ever since. Then, we take him to the big med center for checkups, I often get the feeling that the staff wonders why in the world we never did therapy with him! Of course we did! Then, when one doc prescribes something to help in one area, it defeats the purpose in another.
It is really difficult trying to determine how best to help him without making his life more difficult.
Anyway, you have a great blog that is so inspirational and describes so many of my own feelings.

rbach said...

Your love and dedication to your son are evident in your writing and experiences. I am sure your son appreciates both immensely.

We often think of milestones as linear, but it's often a back-and-forth progression and regression. We experience this with both our kids.

We do celebrate each time our daughter beats a prognosis, prediction, or milestone, but we don't really know what's around the corner. We just live day to day and enjoy the moment whenever we can.

Sonia said...

As a beginner not only in the "mom" department, but also as a "special needs mom" let me say that I've always have the "what if's" in mind, and it's terrifying. This post made me re evaluate the situation. I'm going to try to focus on just letting my lil' peanut be herself and take one day at a time.
I love your blog, your honesty is a breath of fresh air.

Shelley said...

I love reading your posts - thank you for sharing your window on the world. Milestones are great (my little brat with down syndrome is toddling her way towards them courageously even as I type) but living in the moment ... that is everything. Best wishes for you and Dear Son.

Dana said...

I was just recently looking at old home movies of Alyssa when she was 5 years old. She was doing more than she is now, at 13. It makes me sad, too.

I knew she had regressed, but when I saw it on tape, it really hit home.

I think there's such a prevalence of thought that if we just do the right things for our kids, the outcome will be positive. And it's really hard to see, with some experience under my belt, that it may not have mattered at all in the long run. The inner struggles I have felt when trying to make decisions related to her care may have been for nothing.

The thing you might need to remember is that WE, as moms, have done a lot of growing during these years. Maybe the "becoming" isn't just about our kids. We have progressed. And we continue to.

Much love to you, Dream Mom!

Related Posts Plugin for WordPress, Blogger...

Blog Archive