THOUGHTS ABOUT KAITLIN TURNING 2

If any one had told me what was in store for us this time two years ago I think I would have had a meltdown, (oh that's right I DID have a few, lol!!!)

This time two years ago, Wayne and I were engaged, had a one week old baby who was battling for her life on a ventilator in an incubator, and all the excitement, hope and faith that goes with beginning a new phase of your life as parents and a family! There was a healthy dose of fear mixed in there as well as Kaitlin's chances of survival were 10-20%, and there was a chance that if she did survive, she may have learning problems or disability. When you begin the micro-preemie journey, your first focus is survival, it isn't until the life-threatening side of things passes that your attention then turns to "will she be normal?"

Despite all of this I still remember the first time I wrote in her little diary we got to document her journey and we got to sign off "Mum and Dad" What a huge thrill, I still feel warm and happy just thinking about it.

Unfortunately for wee Kaitlin, she had one of the roughest journeys a kid has ever had in Chch neo-natal and survived, but thank god she did! Everything that could go wrong did. Ventilated twice, hole in her heart, jaundice, multiple infections, many blood transfusions, profound apnoeas (ongoing), seizures, chronic lung disease, CPAP (assistance with breathing) the list goes on and on. The scariest thing for me was when she would stop breathing and turn black and get ripped off me and revived. This happened regularly and while at the beginning we thought it was the "norm" in neo-natal, the many hours of research I did on the net and observing other babies in there I soon had the sickening realisation that it was not normal. We saw other babies come and go and we were still in the most intensive care part. We didn't get that period where survival was no longer an issue, and the disability doubts started creeping in. Every day we didn't know if we were going to lose her to a big episode, we didn't know if it was causing brain damage and I became convinced and knew in my gut that things were not going to be OK. The nurses evaded my questioning like skilled matadours avoiding a raging bull. I went from skipping the parts about CP in my premature baby books (I thought it was extreme and of course wouldn't apply to our wee girl!) to reading those parts and everything I could find on the internet obsessively. When I realised that Kaitlin had experienced every single thing that can cause CP (just one of these factors could cause CP and she'd had them all), my heart sank but I still believed that she could and would be a miracle. Wayne and I pushed for an early MRI scan which would show any brain damage. We got called into the family room and a consultant sat us down and told us it looked pretty good and that someone had commented it looked normal, but the neurologist who was overseas would have a look upon his return and get back to us. We were ecstatic! We knew a lot could be seen on MRI and this was the news we had been waiting for. We rang family and spread the good news. When the neurologist had seen her results he called us in and said that her results were far from normal and we should not have been told that they were. He said she would be mild to moderately disabled. I was completely destroyed but decided to focus on the mild part of his statement and breathed a huge sigh of relief because it could have been worse. He explained that he didn't have a crystal ball but judging by what he had seen on the MRI, Kaitlin would need assistance with some things her whole life eg, we probably wouldn't be able to send her to go shopping by herself because she may not understand money etc, but that it was really a matter of wait and see.

I was DEVESTATED. We went down to the river and Wayne put his arms around me and I just sobbed and sobbed and sobbed.

When we finally got her home at 3 months post term after six months in the neo-natal, she was on oxygen and a range of medications. It was scary as hell. Every day I worked with her playing and talking and singing and becoming more panicked about the things she should be doing and driving Wayne crazy with my worry. Every time she was a month older I would look at developmental milestone charts for that age and feel very disappointed and worried, but I think my overwhelming feeling was still one of hope..................

So here we now are at Kaitlin's second birthday, and so much has and hasn't happened. Her first birthday was a real mixture of happiness that we had her and sadness that she wasn't reaching ANY physical milestones. The picture at this stage had gone from mild to looking more like she was going to be severe, and I was filled with grief for her and for us. She was not a very responsive little girl, rarely smiled or made eye-contact and never laughed out loud. I was furious with the neo-natal unit for playing god with a little life and now this poor little girl and the two of us would have to pick up the pieces of a life that without so much intervention wouldn't have been and maybe that would have been better for her. Phew, that was really hard to admit. Wayne's unconditional love for Kaitlin and his pride and faith in her helped me through this time.
Then something happened. This amazing little personality began to slowly emerge out of Kaitlin. She showed real enjoyment and pleasure at things. She smiled often and in response to our efforts. She started trying to move with intent. She obviously enjoyed music. We could see love and other expression in her eyes. Now at two is Kaitlin walking? No. Talking? Well I think so but I'm really the only person who understands her gestures and noises. Sitting? No. Crawling? No. Can she use her hands very well? No - but this is improving. The list goes on. But as time has gone on I have reached a place of acceptance. The goalposts kept moving and moving until they kind of ceased to be there anymore and my priorities for her have changed.

I believe that Kaitlin will do many things. I do believe she will talk one day, I believe she may walk with assistive devices. If she doesn't though, it's not the end of the world anymore. Is she happy? YES YES YES, and that is my measure of success for her now. She is bright, I know she is and I will work hard with her for her to achieve HER maximum potential, whatever that may be, and I will never ever give up on her ability to learn for her whole life. Kaitlin doesn't know what it is to live without cerebral palsy and I don't know what it is to raise a child without cerebral palsy (and it is unlikely I will now, as Wayne and I separated recently), so we just work with what we have. And as we cuddled and laughed and played and got excited at her presents on her birthday I felt much more of the happiness and very little of the sadness of her previous birthday. I wouldn't want to be mum to anyone else. This is one neat kid who is my whole world and I am proud of her and excited to see what she is up to by birthday 3. I LOVE YOU MY BRAVE BABY!!!! XOXOX