Life is unfair sometimes...

Well Z's first birthday has come and gone. And it's truly hard to believe that he has been here for a year! We are actually having a get together on Father's day with the fam to celebrate his birthday. Z is going to be dedicated at church, and then we're gonna have a little party at our house. I bought B and Z matching blue polo shirts and some khaki pants to wear on father's day at church. It should be cute.


SIDENOTE... the rest of my blog is about my beautiful little boy. Day, I dont think you should continue reading... you just need to sit back, try to relax and think happy thoughts!



As I've mentioned before, I had an emergency c-section at 28 weeks... that's 12 weeks early. Z is delayed as any preemie would be, but his delays dont seem to be correcting themselves as time usually does. We have been doing physical therapy for a few months now, as Z still is not sitting up, let alone crawling or walking. Z's therapist recently recommended that I take him to see a pediatric neurologist to see about getting some muscle relactors for him. I was hoping the therapy would be enough, but maybe I am too optimistic. So I took him in and the doc wants to do another MRI (one hasn't been done since he was in the NICU) and he also wants to do an EEG. When I asked about the EEG the doctor told me that because of Z's grade three IVH and the subsequent PVL he is at an increased risk for seizures. Now he has never had one that we have ever noticed or seen, so hearing this was a little devastating. I also mentioned how we were told that after he was born he would have an increased risk for cerebral palsy due to his brain injuries, but as any parent would do we tried to block that out and hope for the best. This doctor basically told me that he thinks he has CP and that it isn't a mild case like I was thinking it may be. I however don't agree with him. The tough part is that usually a "diagnosis" of CP isn't made until the child is older, so for the first few years you just sit there and worry. When I asked if he thought Z's mental capabilities would also be affected from the CP he flatly told me probably. I was crushed. He then proceeded to tell me that my son is funtioning at the level of a 2 month old. By this point I'm thinking he is purposefully trying to hurt me. I know he is delayed but I would say he's more around the level of a 5 or 6 month old! I am so crushed because I feel so guilty now. Guilty that I HAD to get pregnant even though it wan't recommended. I had a bit of a cry fest that day. I asked B if he was ready/ willing for the road that a "special needs" child may lead us on. And his reply was, " I dont really have a choice do I?" to that i respond through tears,"well you could leave us" and he laughs and says, "Im not going anywhere". God I love that man. I get a little angry at times. I can handle everything God wants to put on me (with my own illness that is) but I am not sure I can handle the things he wants to put on my son. I am jealous everytime I see a little toddler walking around.. jealous because I dont know if my son will get to accomplish that. And I hurt...for him, not really for me. I'll have the easy part. He has to live it. I am jealous when I meet with my friend who had her twins 4 weeks before I had Z. He twins were born at 24 weeks and they are perfect. Then Z was born at 28 weeks and was a full pound heavier than her bows were and HE has lasting effects!?! Thats when the good ol question WHY comes up. I am a woman of faith. And over the past few years my faith has been tried and tried. Then I heard a song that has made me cry and yet has given me a peace about it. It's called "Praise you in this storm" by casting crowns. I want to share the lyrics with you all...

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I was sure by now

God you would have reached down

And wiped our tears away

Stepped in and saved the day

But once again, I say “Amen”, and it’s still raining

As the thunder rolls

I barely hear Your whisper through the rain

“I’m with you”

And as You mercy falls

I raise my hands and praise the God who gives

And takes away

I’ll praise You in this storm

And I will life my hands

For You are who You are

No matter where I am

Every tear I’ve cried

You hold in Your hand

You never left my side

And though my heart is torn

I will praise You in this storm

I remember when

I stumbled in the wind

You heard my cry

You raised me up again

My strength is almost gone

How can I carry on

If I can’t find You
As the thunder rolls

I barely hear You whisper through the rain

“I’m with you”

And as Your mercy falls

I raise my hands and praise the God who gives

And takes away

I lift my eyes unto the hills

Where does my help come from?

My help comes from the Lord

The Maker of Heaven and Earth

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I am going to believe in God's plan. And keep believing that God has something planned for Z. I dont know what that is. But I am not in control of it. I will give him every resource to help him have every advantage he can possibly have. But either way. It was a tough day. No one wants to think of their child suffering, or being different, and the pain that can follow because of that.

In other news... my transplant deal may happen next month (July) But I'm not holding my breathe. No one seems really excited about setting it up except me. Since Im on my "miracle drug" Soliris, and am doing fantastic I think they wasnt me to forget about it. But I was to be cured... not sick but taking a med to control some of the symptoms.

Sorry that most of this post was pretty deep. I have ALOT on my plate. And bloggin helps me get it out. Even if no one is reading it.