Jared's story

Jared's story

(Spina bifida)

fairie

Jared was born on 4 January 1994 at 4:56pm with Spina Bifida. We fell in love with him the moment we laid eyes on him. He was beautiful!

When he was about 12 hours old he had neurosurgery to close up the lesion on his back. While in the womb his spinal column had not fully closed and so the spinal cord was exposed and sticking out of his back at waist level. Jared had neurosurgery when he was 3 weeks old to have a shunt put in. After 6 weeks in hospital we went home only to be back in hospital 10 days later because Jared was losing weight. He wasn’t getting enough milk. I just was not a good dairy mum. So we started supplementing him on top of the breast-feeding. There were a few hiccups from time to time. At first I had to take him to the Spina Bifida Clinic at the Royal Children’s Hospital once a month. I always found that very draining, as I had to see many specialists who all seemed to dump bad news on me. They would say things like this or that will probably happen, until one day I said, “does it happen to all of them?” “No”, “Is there anything I can do to prevent it?” “No” “So then don’t bother telling me about it unless it happens. I don’t want to know about it, if it might not happen, unless there is something I can do to prevent it. “

After that clinic things were so much better. There were still days when I would just want to cry, and I wished Matt could be there with me, but they were too frequent for him to be taking days off work. It was during one of these clinics early on that I was told that I would need to start catheterising and gloving Jared. I found that very depressing. I wanted to be a mother, not a nurse doing medical procedures. However I got used to it pretty quickly and Matt and I shared the responsibility. I arranged for the Hospital to give him a lesson so that I didn’t become the only expert on everything and this way we maintained equal footing. Thus all our care was shared, it wasn’t left up to me because I was the one that knew most about it.

Once all this was over it was smooth sailing. I had weekly physio and exercises that we had to do with Jared, and then monthly clinics, and Spina Bifida play group each fortnight. That was wonderful to be able to mix with the staff and mothers who knew what you were dealing with, and could offer suggestions. We enrolled him in swimming at 6 months and he was a real little water baby. He was a very loving happy little man. He was so good, a very easy baby to have. We could go out to restaurants, and he would be happy to sit and watch and listen and play with a few toys. We had Managers of restaurants come out and comment on what a wonderful baby he was. He made an incredible variety of noises. His animal noises were a source of entertainment for all those who saw him. He gurgled so much we thought he would talk really early. He didn’t talk until he was 2 but then it was so clear and beautiful to hear. He started counting at the same time. By the time he was three he could count to 100, in 2’s, 5’s you name it. He was mesmerised by time, and would sit watching the clock on our bedside table for ages. He would get really excited. “It’s 5:43 and next it’s going to be 5:44” We gave him a little calculator that beeped, as he always wanted to play on our computer keyboard. So we gave him a calculator as it had buttons. He had a beautiful singing voice and repertoire. Then at about 4 he must have become aware that all eyes were on him and he point blank refused to perform. He only started singing again when he was 8.

When Jared was 2 he started having severe headaches sporadically. He would be screaming and holding his head back to relieve the pressure. We’d take him to the Hospital and they would admit him, only to send us home 2 days later because he was okay again. This went on with regularity for about 6 months until finally they had decided to do a quite serious operation called cranial cervical decompression. At the last moment they decided to do a shunt revision first. During the operation they discovered that not only was the shunt catheter blocked, but also the valve was faulty. 3 days later he went downhill fast. They raced him into an emergency operation and found that the new shunt wasn’t working, so he had to have another one put in. Each time we were very blessed. Jared was released a week later and he had been in intensive care for 24 hours of that. His doctors were always amazed at his fast recovery.

At the age of 2 Jared got his caster cart, which was affectionately known as “the chariot”. It was basically the same as a wheelchair except it was low to the ground. It was made from a plan from the Spina Bifida Association out of an old car seat and some golf buggy wheels by his father and grandfather. The moment he got into it, he knew what to do and he was off. He was like Evil Knevel in that thing, and was in it practically night and day. His world really opened up. It was lovely to see. He got his wheelchair at 4. I wasn’t too thrilled as I was trying to avoid things that would label him as disabled, but it was inevitable.

Jared is an important member of our family. He has taught both his sisters to count and is in the process of teaching Emily to spell. They generally play well together, but still have disagreements. When he wants to be helpful he is the child from heaven, yet he can also really push our buttons at the other end of the scale when he wants to, as can the other children.

Yes, life would have been so much easier if he hadn’t had these trials and challenges in his life. But it wouldn’t have been better not to have him at all. If we didn’t have him we wouldn’t be who we are. He has been a blessing in our lives, a learning curve that has made us grow. Each time he goes into theatre I worry that we are going to lose that little soul. That little fellow who says “I love you mummy, goodnight” as we turn off the light each night, and who wants nine kisses and sneaks in another one for good measure.

He is a very special child gifted to us from God. He’s “my precious boy, my pumpkin pie, my honey bunny, my snoogle doo, my ginger beer, my gorgie porgie”. He’s my son!