Sunday, June 14, 2009

Philadelphia Postponed

We've decided to postpone our revisit to the Institutes. We probably won't be going until November. We were originally scheduled to go in August but after a conversation with our advocate, we decided it would be best to wait. I had a great conversation with Susie, our advocate, and I actually felt better after talking to her. I was completely honest with her about how little we have been able to accomplish with Joaquin over the past few months in terms of our goals.

We've been busy and honestly a lot of Joaquin's program has not even been started. There is nothing worse than writing those words. I feel like I am failing him as a mother right now. He is still getting his Early Intervention therapies 5x/week but there is sooooo much more that I could and should be doing with him. Talk about mother's guilt.

When I get down to really looking at my schedule, it is pretty crazy busy but there IS time to fit in his program. However, I'm lacking the energy and enthusiasm that it takes sometimes and I usually want to spend my free time loving on Joaquin not "working" with him. Again, it's not supposed to be WORK and in fact, the program is supposed to be fun and enjoyable but I just feel like I'm overwhelmed with it. With the diagnosis. With the prognosis. With the responsibility. With the paperwork. With everything.

There are days when I want to throw in the towel. I want to forget about the Down syndrome and just know Joaquin. I want to accept him for all that he is right in this moment and to stop worrying about the future or how much his brain is stimulated or developed.

This job called parenting is exhausting.

So, I will take Susie's advice and start from the beginning. Taking it one step at a time. Starting with one aspect of the program and trying to accomplish it, then slowly adding more when I can. Any little bit is better than nothing. And I will remember that Joaquin is thriving no matter what by living in an active, stimulating and loving home. Thank God for that.

Here is Joaquin at the end of the day. Exhausted...just like Mama!


Lisa said...

Jennifer, try to go easy on yourself. It's okay to want to just be, to love your baby and not have every moment with him be theraputic. You are so clearly devoted to him and his well-being, and you're certainly committing a lot more time and energy to helping him achieve his goals than a lot of us other parents. I don't think you have a single thing to feel guilty about.

Maggie Mae said...

Hey Jennifer, first, and just so you know... we ALL think that we're not doing enough, or everything we could be and that, maybe we should be doing more. And, maybe that's true. But, sometimes the truth is relative. Joaquin has to have a chance to be just a baby who's loved and you have to have the chance to be just his mother that loves him also. We cannot and should not always be a therapist/mother/teacher. Sometimes, we do just have to be. Take it easy. Do what you can. He will be fine! And, he will know he is loved!

BTW - Thanks for stopping by my blog. Glad something there clicked for you. My guys especially or still love the mirror to watch their mouths as they form words now. Very good speech/language feedback.

Michelle S. said...

Thank you for your post and your honesty. I haven't been brave enough to put it down in words on my blog. We were hoping to go back to the Institutes in September and begin the next step and it just isn't going to happen for us either. I feel the exact same way you do. And I am starting at the same place you are. All over, one thing at a time. So here's to starting over! :)

Monica Crumley said...

Oh, Jennifer, I'm sorry you're feeling down. You do so much for Joaquin and you do have 2 other active boys to care for. We schedule 2 therapy sessions/wk because I'm too busy with family. I've felt guilty plenty of times for "not doing enough." But, really, having Joaquin just be an active member of the family, being loved, played with by his sibs, experiencing the joys of life are VERY educational (and exhausting!) I hope you're not beating yourself up -- you're an awesome mom!

Anne and Whitney: Up, Down and All Around said...

do NOT beat yourself up... you are doing such a GREAT job with Joaquin! He could not be doing better and you, your husband and your other two boys have made all the difference in the world for him. By the way - it is AWESOME that he is able to chew half of a blueberry and swallow it without needing to be pureed or mashed. I tried blueberries for the first time with Whitney today (quartered or smaller) and she did alright, but the skin of the blueberry kind of threw her off. :)
Hopefully you can get some sleep - I am exhausted too (but somehow I never get myself to bed when I say I will!)
also... I bought 30 day shred and have done it 2 or 3 times - I really REALLY need to start doing it (or running) more regularly. maybe then I will have more energy, ha :)

Lidia said...

Chin up, Jennifer. I feel the same way if I go just one day without doing exercises with Nathaniel. But these little guy are resilient, bright and self-motivated, and they will do just fine. You have a lot of responsiblilty, with two other sons to take care of, just like I have Nathaniel's twin to consider too. Nathaniel's developmental therapist told me this: don't worry, they all learn to walk, they all learn to talk, they all learn to do everything. We'll get through it!!
Lidia Ferrari

Cheri said...

Jennifer, YOU are an amazing mom...! Truly, I knew it the first time I popped on your blog almost a year ago. I get overwhelmed sometimes too but sometimes I realize I am self imposing this stress when if only I would step aside and really take a look at how well my little one is doing, I could/should trade my stress and anxiety for a nice deep breathe. Joaquin is doing amazing! In that you can celebrate and...and all the snuggling and loving on him...therapy in its own right!! :)

Actually Jennifer you have embarked on roads I haven't yet with nutrition...and you inspire me. In fact...I often think of your post with the picture in your kitchen of the Milk Truck...I think it says..Remember the Milk Man? and I know you are dairy free in your house and I think of that as I pull the jug of whole milk out of the fridge to fill yet another sippy for Reid...and think, Hmnnn this might not be the best thing for him...but I don't have the energy to look further into it. Someday I will...but I admire that you already have a good grasp on this area.

Okay...lastly, (boy this is getting long! :)) Sometimes I get so overwhelmed that my email inbox looks crazy and out of control and it takes me a while to respond.... you actually had asked on my blog if I knew of any books to recommended on telling siblings about their brother/sister's DS diagnosis....I never got a chance to I am here, just a little late :)...I read, We'll Paint the Octopus Red to Luke during our discussion period with Luke about Reid's diagnosis.

...have I said this yet..YOU are an amazing mom!?!?! :)