Thursday, March 22, 2012

Discouraged

While I am seeing tremendous progress for Camdyn in the area of speech, I still get discouraged often.  It happens when we are around other kids who are near her age.  We were at the park a few days ago and Camdyn wanted to swing.  I took her over to the swings and put her in the baby swing.  Swinging next to us in a big kid swing was a little girl who had just turned 2.  I know I shouldn't compare - blah, blah, blah- but it's just right there in front of me, and it's obvious - my daughter is far behind kids her age.  Her daddy doesn't see it.  He's not around any other 2 year olds besides the two that reside at our house.  He thinks they are doing great, and all things considered, they couldn't be doing better.  However, I am around other 2 year olds, and I hear them speaking in multiple word phrases and some even in sentences like the little girl that was swinging next to us.  Not only was she swinging in the big kid swing, she was talking like a big kid, "Mommy, I want to swing higher - push, push, push.  Wheee!"  Then I see my precious girl pointing and grunting "uhh, uhh, uhh" at the swing.  After I encourage her to say swing (mouthing SWING really big), she manages to say "seen" and I am so proud that she attempted the word and came pretty close, but I am also sad.  Why does it have to be so hard for her and so easy for this kid next to her?  I hope you all don't think I'm terrible for being so honest, but those of you who understand know how much it hurts.

She has developed a bigger vocabulary over the past few weeks.  She will attempt more words; however, very few of her words are complete words.  She says "ca" for cat, "do" for dog, "ba ba" for bottle/drink, "p" for up, etc.  I know it will come with time, but she will have to work harder than other children.  Our speech therapy MESS is still up in the air.  It looks like my insurance does not cover speech therapy, and the therapy office continued to let us come every week for nearly a year racking up a huge bill!  It really ticks me off more than I can write about here and still remain tactful. 

I am going to try to get a re-evaluation with our early childhood program for speech therapy for Camdyn.  I don't know if she will qualify or not or if I will even like the therapist they send us if she does qualify.  We haven't had the best luck with some of the therapists they have sent in the past.  I will probably still pay out-of-pocket for private therapy with the therapist she was seeing because I liked her a lot; I just don't like the stupid office staff that couldn't figure out we weren't covered even though they told us we were!  So, here we are two years down the road in our micro-preemie journey and while things are much, much better overall, there are still bumps in the road and hurdles to cross. 

5 comments:

Jessi said...

I feel discouraged a lot, too. It always seems to be at the park where I really notice how delayed Jack is. I wish I could have my "miracle perspective" always on - it's a miracle that Jack is even alive! Constantly trying to remind myself of the huge obstacles he has already overcome...

The Kimmels said...

The insurance thing sounds frustrating :( We haven't taken Cohen out much and since he is our first, we don't have much to compare him too. Sometimes this is kind of a blessing in disguise for us. I know it's hard to always have your positive pants on and sometimes it's okay to be frustrated that our babies didn't get their "normal" start. One of the drs in the NICU told me to look back to last week and last month and think of where Cohen was then. And when I thought back I could see how far he had come, even in a short time.

Megan said...

Just becuase she is delayed doesn't mean she won't get there! Charlie qualified for speech this time last year (just before he turned 2) barely saying more than repeating consonant sounds after us. In dec. he was discharged and now he's apparently higher than his age in speech. When it finally clicked, it clicked, and he took off! You're doing a great job mama! One day (soon) you aren't going to be able to stop her! ;)

Angie said...

Virtual hugs...We all know it could have been way worse for our babies but we are human and its ok to have sad and discouraged days. I'm feeling like that too this week, tired of hearing the trio cough and wheeze (as I'm typing this) and doing breathing treatments, sad that its become routine. I just try and remember how blessed we are and pray for strength and acceptance for whatever God has planned for us

Marcie said...

I love your honesty, Michelle. And I'm right there with you on some days. I know Veronica is doing so well so I try not to complain or get discouraged, but sometimes I just can't help it (and then I feel guilty when I do get discouraged because I know others have more challenges than we do). She isn't rolling yet and I see other micro preemies younger than she is rolling all over the place, trying to crawl and even trying to pull up. I try not to compare, but......

Sorry the insurance thing hasn't worked out. I can only imagine how frustrating it must be.

Thanks again for your honesty and your post.