Downs...........

I wish the title of this post could be "ups and downs" but to be honest the last week or two I've just felt down.  So down in fact that on the advice of a good friend (who will likely make many appearances here so we will name her "Vegas") I began to see a therapist.  I've only had two sessions so far so no real sense of if it will be helpful but I am hopeful it will be.

Why am I so down you ask?  Well, I am still struggling to come to terms with the cerebral palsy diagnosis that we received for N in April of this year.  We knew many months before that that we would be getting the diagnosis, but hearing the words from the doctor were still devastating. I struggle every day with the feelings of guilt for delivering them too early.  I feel guilt for carrying them in the first place.  You see I have what's called a "T" shaped uterus.  I was told I would likely only make it to 35 weeks with one baby, carrying two was not a good idea for me.  As a result of issues with both myself and DH we had to do fertility treatments, and our only option was IVF.  We put back two eggs, which we were encouraged to do by our RE.  I never expected them to both take, no one did. We had a 50/50 shot of even one taking, let alone both.  Then (as much as I would have been devastated) we figured one would make it beyond 8 weeks since he was far behind his brother in measurements.  We got to 12 weeks, with both babies doing well and we were told to reduce.  I thought I could do it, going into it knowing my issues I thought that if we wound up with more than one I would be able to reduce.  But I saw the heartbeats and I just couldn't do it.  I thought I would prove the doctors wrong.  I bought a fantastic book (Dr. Luke's Expecting Twins, Triplets, Quads) and followed ALL of the advice.  I went on a reduced work schedule at 23 weeks, totally out of work at 27 weeks.  I didn't lift anything, exercise, walk around much, etc.  I was experiencing an uneventful pregnancy.  Then at 30w3d my water broke.  I had no warning prior to that, no contractions, nothing.  My mom rushed me to the hospital hoping we were wrong, (DH had to get home from work and met us there) but we weren't. My water had broken at 8 am, I delivered both my sons and was back in recovery by noon.  It was a QUICK labor. There was no time for drugs, I delivered the boys vaginally and to be honest their birth day was one of the worst days of my life.  I was only able to glance at them quickly before they were rushed to the NICU.  Until I was able to see them an hour later I had no idea if they were alive or dead.  I felt like a failure.  I had failed my babies, and I had failed my husband.

We struggled through the NICU time but thought it would be over once we could take the boys home.  On the day we took N home we were advised he had PVL's (cysts on the brain that show where damage is) that were "tiny but numerous" according to their neurologist.  We were told he had a "greater than 50% chance of CP and a 30% chance of seizures".  I heard that info and thought well that leaves almost 50% that he won't, and that's what I thought until 5 months later when at our first appointment with a developmental pediatrician that the CP diagnosis was coming.

After we brought the boys home from the NICU I immediately went into mommy mode. We got started on Early Intervention and the boys began OT two months after they came home.  We added PT for both of them in December of last year at the hospital they were born, and then another PT for N through EI.  Recently we added Developmental Intervention last month ("play" therapy) for both boys as well.  We have therapy four days a week and fill in doctors appointments when we can as well.  Its a little crazy but if it helps my boys then its worth it!

So that's some background. Why am I so down lately? Well because N has been struggling to sit for months now.  He works so hard and I feel awful that he is still struggling with it.  He has made progress of course, two or three months ago he couldn't even prop sit for more than a minute or so and sitting with no support at all lasted 30 seconds at best.  Now he is working on his endurance and can prop sit for 15 minutes.  He needs corrections during that time, but at this point (for the most part) he can correct himself with a simple touch to his legs or back.  So he is improving and I know that. But some days................I just want to scream. Because he isn't sitting yet and he is a year old. His brother is sitting, crawling, pulling to stand, cruising.................and N just lays on the floor unless someone puts him in a different position.  Some days I feel hopeless, that he will never sit, crawl, or walk.  I want to believe I will be ok with all of that, that its ok that he can't do anything on his own because he is healthy and happy.  But the reality is, I want to see my sons run around together.  Someone sent me the link for the youtube video of the twin boys talking to each other.  I cried watching it.  I don't know if my sons will ever be able to do that................and it breaks my heart.  I made a lot of good friends who were going through IVF at the same time as I was, I've never met them in real life but they are still my friends.  Some of their babies are younger than mine and doing way more.  I've had to block their posts on Facebook because seeing the updates with babies crawling, cruising, walking, talking.......just made me cry. I feel awful that I can't be happy for them.  Then of course there is Z.  I adore my baby and can't imagine life without him or his brother............but Z is an everyday reminder of what N is not doing and may never do. 

I have good days and bad days, I expect they will be bad for a while.  Stay with me though, I swear the good days will come too and hopefully become more frequent.