One of those days

lesleytaylor · May 2011

So yesterday we had a cookout at my parents house. My 80 year old aunt (she acts and looks like she's in her 60's and was married to a doctor) who knows all about Landon's issues comes up to me and says "I want you to put him on the floor so I can see him crawl"...... I told her he can't even roll yet let alone crawl. Throughout the day she made many comments kind of insinuating that we carry Landon around too much and therefore have delayed his development. We 100% do not carry him around too much. He spends alot of time on the floor playing but since he is 8 months old and wants to be a little more mobile there are times when we carry him so he can be upright and moving. It was so frustrating to hear her constant comments. And then my 13 year old niece says, "is he going to be like that for the rest of his life"...... I seriously wanted to crawl into a hole and cry my eyes out.

Then today (more like 4:30 this morning) I start to think about the genetic testing that we are waiting for to come back. Of course I am now a nervous, anxious wreck and everytime the phone rings I feel physically sick thinking that it may be the neuro's office with the results.

I hate that I didn't even really get to enjoy the fact that the last MRI showed that his brain was improving. I had to immediately start worrying about the horrible degenerative diseases that they are testing him for (and that we have a 1 in 4 chance of passing on).

On a possitive note, we have our first appointment with a pediatric chiropractor today who also does cranial sacral therapy. So I am curious to see what she has to say.

Thanks for reading this long post

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mskolman · May 2011

We all have those days. I am sorry you had to deal with it though. It doesn't seem to ever get any easier, does it?

My son has major medical issues and has developmental delays. Although I thought family were very informed of his issues, my SIL still asked when do we think he will be off his oxygen this weekend. Really? We just don't know. We would have hoped he would have been off of it by now, but come on. He is now 2 and no sign of it going away anytime soon! She also asked why he needed the new Sure Step braces we just got. I was stunned again. He is just now starting to walk and he obviously needs the extra support. I just don't know what to say sometimes. I think it is harder coming from family because they should know better. I deal better when strangers ask because they aren't informed and have no idea about what my DS has been through.

Just know you are not alone. Celebrate your LO's accomplishments and try to keep friends and family informed if they are ready and willing to listen. Hugs to you!

FutureMECC · May 2011

I am sorry you are having a rough day. I feel the same way all the time. I hate the constant questioning. As if we all don't have enough on our plates, we don't need others telling us what to do with our children. Big hugs.