Saturday, February 27, 2016

So what if there are two?

Alex and I attended a dinner put on last night by the boys' school for parents of kids with special needs.  There was a couple who had a 36 year old daughter with Rett's syndrome, which is a severe impairment, lifelong.  They spoke about their journey, things they helped, and how they have coped.  It was always interesting.  We sit among many different people.  There were people there with kids who do not sit up, do not walk, and will require lifelong care.  Alex is always a positive person; he tries to remind me that our boys should get better, that they should get jobs, get married if they want to, etc.  God, I hope so.  Alex finds it hard to relate to those who have kids with severe disabilities.  I just find it terrifying.  So they spoke A LOT about siblings, and the value of siblings, and how important siblings are for kids with disabilities, as it creates a normal life.  It requires the disabled sibling to be with typical kids, and may have to get out in public, participate in activities they may otherwise avoid.  Very interesting.  Then there is us.  We have two kids with special needs.  It feels unlucky, unfair, and to be honest, it totally sucks.  One thing I hate is when people say there will be a positive or this child will change you.  I honestly would never ask my boys to have to struggle so I can change, or so I can better myself.  I could have done that without a disability.  Very annoying.  The couple said to me "I can't imagine two kids with needs."  I was thinking to myself "I don't want to imagine your existence either."  I guess no matter what it is hard.  I am still thinking about a third child.  I am not sure.  It would be amazing to have a typical child.  It would be amazing to have any child.  Each of my boys benefits greatly from the other child.  They learn a lot from each.  I guess we will see.

Friday, February 12, 2016

Where have I been?

Well, it got harder to write.  I just am not sure exactly what to say.  We progress at a snail's pace.  Every new sound is totally amazing and worth the work, but it is slow.  Landon is saying yea and no all the time now, and I am so blessed.  Sometimes I pinch myself to really hear that it is true.  He is saying mama and do and go and me and more and all done and hi (hi at school only).  He is progressing, but there is so much more work to do.  We are still working on potty training and play skills and fine motor.  I sent an email out to try to find a private OT since I do think we need more OT.  Fine motor skills impact play.  So we will see.

Logi will  I am sure be diagnosed with Apraxia in April.  He is speaking a little more.  He is saying mama, more, and no, not consistently and coming and going. He is delayed overall. 

So damn cute and very frustrating.  I still forget sometimes that this is my life.  To me, they are not special ed- they are just perfect.  I try to remember that.

and I pray all the time.