Tuesday, March 6, 2012

Long over due - but begin at the beginning.

There are not many things in life that I wish I had gotten to but this is one of them. Being a mother is unlike anything else I have ever done or been challenged by or been blessed by in my whole life. And I think its time I wrote a little of this journey. I can promise to make you laugh, to make you say "aaawww sweet", to make you shed a tear or 2 (or as in my case quite a few), to get angry with me, to share my laughter and joy, to maybe even say "ag shame". I will have to go back some steps to get to present day. I had written stuff years ago so have pasted them here:

Wed 12 Jan day 15

The precious pixie was born on 28 December 2004 at 12:10. She was born about 2 weeks early, eager to make her appearance in this world as I guess she has some important things to teach. I birthed her out of the pool and then Doug and I got back in the pool with her and just gazed in wonder and love at this little squirming bundle. She was perfect and we loved her immediately. We were given 2 days of bonding and loving and learning. Then a bombshell was dropped on Friday morning. I remember feeling so fragile and tearful. Sharon ever so gently told us that Kayla has some very interesting features and suggested that there was something that we should investigate regarding her chromosomes. I felt really fuzzy and felt that I was not understanding something really basic. I was sitting on one side of the bed closet to Sharon who was holding Kayla and Doug and Michael were sitting on the other side of the bed. I asked the disbelieving question: “do you mean something like Downs Syndrome”. She looked down at the baby and then at me and said yes. My eyes just filled up, this could not be true. I reached over and took my baby from her and just held this little body close to mine. She carried on talking but I don’t remember much of what else was said. She mentioned something of talking to a genetic councillor and blood tests. I felt numbed and in a cocoon where reality was fuzzy. At some point she left and Theoni arrived to give us each a massage. Doug took Kayla while I had my massage. There were some points in the massage when I lay there – the tears pouring down my cheeks. This is such a cruel world and to not have all the faculties and wits and looks makes for a very difficult journey. As I lay on the bed gazing out of the window I became aware of some many butterflies coming past the window. There was this continuous flow of white wings fluttering past. Doug came into the room when the massage was finished. He stood in front of me – so calm and gentle and seemingly at peace. “I love her no matter what” he said and his eyes filled with tears as he held me. “I am so sorry, I feel like I did something to make this happen while she was inside me. Maybe it was because I wished so hard for a little girl…”. Doug just held onto me saying it was not me who did anything wrong. I don’t really remember the rest of the day. I held her a lot and I am sure we slept together in the afternoon. Michael had gone with this mom for new year. Doug spoke to him on the phone and he was quite distressed and couldn’t talk to his mom about it. We wanted to make sure before we started saying anything to anyone. I

We had a quiet New Year. Sushi, champagne and beautiful sunset and then a dvd with a box of chocolates. We would be ok. One step at a time, one day at a time. Right now she is a little baby, just like any other that needs love and care and feeding and changing.

Sunday was a bad day for Doug. He had no energy and was listless and tired and emotional. I said I would look after him. He has been working so hard all week looking after me. I told him to rest and I would get lunch. I went up to Woolworths. It was a slow horrible shop. I felt awful and exhausted. I kept having to rest in the aisles and bend over my knees. I tried to buy dinners and stuff for the week so that Doug wouldn’t have to worry so much about dinner. As I drove away I realised I hadn’t bought anything for lunch – the prime reason I had gone up to the shop. Oh dear. I got home tearful and exhausted and so hot. My internal thermometer seemed to have gone haywire and I couldn’t cool down. We swapped roles. Doug regained his strength and mine disappeared. Michael and Michele came around. Sharon had put us in touch with them. They have Elijah who is 11 months old and a Downs Syndrome child. They were such wonderful open people. I kept my face neutral and listened and asked questions. But I felt so sore. He looks funny. His little eyes are squint and his face is a strange shape. As I walked down the passage I just wanted to sob and howl out loud. I am so terrified. They lent us a book and said we would keep in touch. Doug’s mom and dad arrived while they were here. We pretended they were friends.

The genetic councillor is large and energetic and warm. But even with her name like Merlyn could not ward off the bad news for us. She gave us the low-down and I barely took it in. All I can see is fear. Michael seems better about the whole thing. We went off to the hospital so that Kayla could give blood. We first went to the lab but they seemed reluctant to take blood from such a little titch. So Merlin bullied her way into the paediatrician squeezing us in. I felt claustrophobic with everyone there and Merlin being so noisy and demanding. Dr Leshner asked if I was ok with holding Kayla while he took blood. I replied “I can’t promise not to cry but I promise not to thump you.” He was so gentle but she cried when the needle went into her arm. Her little arm was so small you couldn’t even see the veins in it. And the tears spilt down my cheeks. Dear God…..

We went to see Dave and Shirley later that day. We need the support and they need to know. Of course they were wonderful and the first thing they said was she was still the same little girl and they would love her. Then we phoned my folks. My mom had this stunned silence on the phone and my dad just kept on saying “oh shit”. They both said it didn’t change anything and that she was still the same little girl, the same little granddaughter. Everyone is so shocked. Then we called Susie. I was afraid of scaring her with her being pregnant. She was so pleased we had told her. She was unafraid and full of love for us.

Thur 16 Jan day 16

Shirley called the next morning. She was in tears and upset and angry. My Mom called later in the afternoon with the same reaction. She hadn’t been able to go to work. There are days when I feel very strong and capable and then there are others where I am so fragile. Doug is an incredible pillar of strength. I feel like I am in a grieving process – grieving the little girl we don’t have. I am not sure what those grieving stages are - denial, anger, disbelief, sorrow, acceptance – something like that. I think Doug has bypassed the grieving. He has accepted what is and seemingly unconditionally.

My folks came up for the weekend. It was so wonderful to have them here. We all went along to Sunninghill Hospital to meet with the cardiologist – Dr Kenny. It was quite traumatic for Kayla and I had to feed her to try calm her down. He said we are very lucky as her heart seems to be fabulous. There is still a hole in the heart which all babies are born with and this should have closed by 2 months. We will go back to check this is the case – but he is happy. Apparently 60% of these little ones have heart defects so we are very fortunate.

I was getting desperate for some alone time. Michael has been with us virtually non stop since Kayla was born and together with all the visitors I was reaching a screaming point. I am an unsociable bugger at the best of times but with this little pixie around now and all the new things I am dealing with – I am getting desperate to climb in my cave.

I am not able to do much. She feeds frequently and the last 2 days has wanted to be held a lot and sleep either on me or with me next to her. I so love the breast feeding. To see the frantic crying and very busy kicking moving into a lunge for the nipple and then big striding gulps to the little eyes getting heavier as the tummy gets fuller it is so beautiful. Sometimes it is hard and I have had a couple of weeps where we couldn’t get the feeding right. Also my nipples get very sore and tender at times. I hope I am not doing something wrong.

My Mom called again yesterday morning – so upset and in tears. She is so angry with God. She feels I have had enough to deal with in my life and why was he making things so hard for me. I said that I don’t feel I have had too much and all the difficult things I have come out of on the other side stronger and wiser and certainly not broken. I feel that she is feeling impotent in her own life because things are hard for her now and now seeing her child face difficulties is making her feel helpless. I also think she is fearing the future, because really those difficulties are in the future. Right now I have a little baby girl who needs love and feeding and changing and cuddling – no different to any other baby. I know my fears are also future linked, but if I dwell too much on that for Kayla then I won’t make it to tomorrow. I believe she is going to teach me about remaining in the present – something I don’t do very easily. Mom also hasn’t been able to tell anyone about Kayla having Downs which I think would help her if she could tell people. There is just so much positive affirmation out there about these special little people. I have told every single person I have spoken to. As much as I spoke these words to my Mom I found I was upset for the rest of the day. I guess that I have still a little way to go along the healing process.

This was an email between Susie and I and she just worded things so beautifully.

Hi sweetie

You eat your veggie soup first and then I’ll eat mine! Come on big sissie – set an example please!

No one will ever understand why God chose you to do this incredibly difficult job. Ann (Paul’s sister who is a nurse and a midwife) said that one thing she saw in all her times as a nurse / midwife was that only really special people are asked to look after Gods Angels on earth. And that is what Down Syndrome people are: because if you think about it, they never lose their innocence or massive loving ability. Throughout their adulthood as we all get a bit bitter or selfish or mean or dishonest, while their integrity never falters for a moment. They love and laugh their entire life and are innocent children throughout their lives.

Another thing that you have to think about is that you were asked to do this special role – you weren’t ordered. You chose your route of not taking every test going because basically – when it came down to the crunch – this was your baby – yours that you and Doug had been blessed with. You chose not to take the tests because you know you would never do anything to hurt or kill your unborn child. Because maybe you don’t know you know it yet but deep down you and Doug are one the rare couples on earth that can make a difference to this little girl. You guys are strong enough, kind enough, patient enough but more than any of that – you both have so much love for each other and Kayla that you guys are going to cope – and cope exceptionally well.

I can see huge things coming out of this Aileen. I can see you making massive grounds on developing Kayla – things that you and Doug can pass onto other people around the world. I can also see you having other children, children who will grow up in your environment who will help Kayla as much as you can or maybe even in other ways that we will not be aware of.

Also know that any family dilemma like this, brings all your family and friends around you so very tightly to help you through this. And By help – feel free to kick shout and cry when the responsibility gets too much at us but also know that we are there for all the beautiful stories, photos and magical moments to share through Kayla’s Life.

I know you are not religious but this is part of Gods Plan for you guys – I just don’t know what it is yet. Another person who I think would be amazing to talk to through this would be Alan. What do you think?

Love you xxxx

From: Aileen Kennaugh [mailto:aileenkennaugh@mweb.co.za]
Sent: 12 January 2005 13:40
To: Greenhalgh, Suzanne
Subject: RE: Jabu


We are fine here. Am having a little bit of a wobbly day today. Guess they can’t all be strong days. Kayla hasn’t wanted to sleep without being in my arms or on my body. She has eventually drifted off now in the spare room once I lay with her for a while. Mom was really battling this morning. She called me in tears. She feels so angry that this is happening to me and feels that I have had enough kak in my life. She was so afraid of the long hard journey ahead for us. I am too but just try focus on every day and living in each day instead of trying to imagine what the future holds. She does that a lot – imagine the future and fear it to some degree. I do the same but if I try do that too much now with Kayla I won’t make it to tomorrow. I don’t feel I have had too much kak. I think for everything that has happened to me I have come out the experience a little stronger and wiser and not broken or weaker. And I trust that at the end of the day (and through out this journey) it will be the same again – a little more wisdom, more gentleness, more patience, more courage and more strength will hopefully be in me.

I know for all me lecturing to you about eating I find that now I am battling to eat during the day and find nice things. This doesn’t do well for strength building. I was hoping to start a little bit of gentle exercise. I so miss what exercise did for me and for my head. I am still bleeding and Sharon says this is directly related to how much I am doing. So this week I am focusing on staying still and trying to stop the bleeding.

Love you madly. Keep eating your veggie soup!


22 February 2005

Well the little Pixie is 8 weeks today and just doing so well. She is about 4.5 kgs and thriving. I can distinguish her cries (for the most part) and it is so rewarding to be able to soothe her whether it is through picking her up or feeding her or rocking her back to sleep. She sleeps so well through the night, going to sleep at about 7pm and waking up at about 3 am and then sleeping again until about 8 am.

The wave and trough emotions have eased off considerably. In fact I can’t remember the last time I cried - quite a relief after all the emotions during my pregnancy. I do have some moments of fear but so long as I continue staying in the present then those fears ease away. My days are pretty full with looking after Kayla. When she sleeps for an hour or more it is so exciting for me to get to hang out the washing or clean the kitchen! I have become such a home bunny. I am trying to do a bit of advertising work which is very tricky. We have employed someone to help in the house and with Kayla and she will start at the beginning of April. Her name is Memory. I have been dreading sharing the house with someone else but now I am quite excited at having a bit of help and also getting rid of the spider webs on a more frequent basis!

We went to a Down’s meeting on Saturday which was with other parents and their little ones. The idea for the meeting is to share information and get some support. It was great to meet other people. I am not so afraid of what the children look like now, not like when I met Elijah. From that we linked up with a physiotherapist, Dianne who specialises in children with problems. We went to see her this morning. She says Kayla’s muscle tone is pretty good. She has shown us some exercises to do to help with her neck strength and using her tummy and core control. I liked her a lot – she is gentle and of course she said great things about my gorgeous daughter.

I am going to Mom and Dad next week for 10 days. I am not looking forward to being away from Doug for such a long time but am so looking forward to spending lots of time with them.

Not all the post will be this long - but those beginning days were just so memorable for various reasons.

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