I Express Myself Through Writing
I wrote most of this sitting on a rock on a little beach, by a river with a very wet dog trying to get me to throw sticks for him. This was the morning after the worst evening and I hope with all of my heart it remains the worst.
When I found out my child was born with a learning difficulty that I didn't know about, I refused to believe it. When I was made to believe it, was upset for maybe half an hour. Then I blocked it out of my mind. I didn't have time or space to process that this tiny baby in the plastic cot, with wires coming out of her everywhere was maybe going to have to face MORE challenges, MORE struggles than she already had in her little life. I remember signing something after one of my scans agreeing that I wouldn't sue the hospital if my baby didn't come out “perfect”. Her words, not mine. When my should have been hefty, healthy 9lber came out purple and not breathing, at 7lb2 I didn't really register, I was drugged and in terrible pain, hot, disorientated and bombarded with medical personnel coming to tell me what they'd tested for in my daughter,what needles they'd stuck in her and why, I was having needles stuck in me and was being asked to “change my lifestyle...oh after all this has finished”.
Then, we hear this. “45% of down syndrome children have a problem with their heart...and unfortunately, Hazel is one of them”. The consultant drew us her heart. As he learnt over the paper studiously, a horrible silence filled the room and I exchanged a look with her father, sitting straight backed on the bad news sofa next to me. Here we were, sitting in the bad news room, a box of bad news tissues on the bad news table to the side of us, and this consultant was drawing as a picture with the enthusiasm of a toddler. It was almost funny. But, of course, it was anything but funny. One complete AVSD diagnosis later and I gave even less of a damn that she had Downs. Now I wanted a child with learning difficulties who didn't have two holes in her heart that would make her progressively sicker until she had open heart surgery.
Funny how having a sick child...and then a SICKER child affects you. I found myself wishing she would “only” struggle with some of her milestones, she would “only” need yearly thyroid checks and physiotherapy. I didn't want her to have a heart full of holes, so I just didn't process it at the time. It was like my brain had shut down because otherwise it would burst. My little girl, who is so strong and so expressive already would have a far greater struggle on her hands than maybe being late to tie her shoes, or be toilet trained.
Fast forward to last week. I had a call from my baby’s nurse who was covering her normal nurse for a week. “How much has she eaten today” would trigger a huge emotional catalyst that has sent me into a place I never wanted to go, for the sake of my baby and my fiance. My baby is a bit sleepy, she has a cough sometimes, she is a little pale, she has chest retractions. She gets breathless feeding and that is all at the moment. Some doctors tell me this is normal, some tell me to watch her carefully, “as long as she's not turning blue”. but how do I watch her do this for the next five months or so? How do I cope with the possibility of an NG tube being reintroduced at some point, losing the normality I have introduced to her life? How will I medicate her every day knowing that the medication is the only thing that is standing between her and heart failure? They say “you will, you have to” but how? It seems totally inconceivable.
For this battle that is mine as much as hers, I choose anything that will get me through. Pills, crying, CBT, pacing, dark, terrible thoughts that make me want to ring my mother at 4pm on a Monday and say “come, please come I can't do this anymore”. None of this will fix my baby, so none of this will fix me. We are linked, she and I, beyond anything I thought possible and my heart is broken until hers isn’t anymore.
Having a chronically ill child is like travelling on a plane to somewhere far away. Say you've decided to move to another country, it's your life's dream and finally you're doing it all by yourself. So first of all, your plane is diverted somewhere, there is a delay, some problem crops up. You’re waiting in the airport at 2am and you're already tired, but you're excited still because you still get to go and you’ve been preparing for a long time.
You get to your destination, you're really jet lagged but it's so beautiful, it's everything you were told it would be, even though your driver didn’t arrive at the airport and you’re only passable in the language. You’ve muddled through and got this far on little information and your own intuition but you’re a bit less jet lagged now, your mind is clearer.
You’ve started to feel quite alone and a bit scared because you've just looked at the news and worked out that there's some natural disaster that might be happening in a week or so. You should be far away enough for it not to bother you, but remember, you don't speak much of this country’s language so you just don't know. You rely on Google to tell you and that scares you more often than it reassures.
The locals are kind, but busy and communication is difficult. And anyway, this was supposed to be your life's dream so you are reluctant to ask for help anyway. You don't want to feel like you’ve failed in the only.thing you’ve wanted as much as you do this, but sometimes, even if you can't admit it to yourself,you just want to go home.
For anybody that tells me I am doing an amazing job, I'm coping so well etc, I'm really not. I'm trudging through each day that brings us closer to the best solution we are going to get and hoping it doesn't drive me mad in the process.
I'm rambling, but it helps, I think. Things are still beautiful, sun and water still make rainbows, even though I can't really see them right now. In time I can only hope I will again, on a little beach by a river, this time, with a very wet dog, my husband and my precious daughter by my side.
When I found out my child was born with a learning difficulty that I didn't know about, I refused to believe it. When I was made to believe it, was upset for maybe half an hour. Then I blocked it out of my mind. I didn't have time or space to process that this tiny baby in the plastic cot, with wires coming out of her everywhere was maybe going to have to face MORE challenges, MORE struggles than she already had in her little life. I remember signing something after one of my scans agreeing that I wouldn't sue the hospital if my baby didn't come out “perfect”. Her words, not mine. When my should have been hefty, healthy 9lber came out purple and not breathing, at 7lb2 I didn't really register, I was drugged and in terrible pain, hot, disorientated and bombarded with medical personnel coming to tell me what they'd tested for in my daughter,what needles they'd stuck in her and why, I was having needles stuck in me and was being asked to “change my lifestyle...oh after all this has finished”.
Then, we hear this. “45% of down syndrome children have a problem with their heart...and unfortunately, Hazel is one of them”. The consultant drew us her heart. As he learnt over the paper studiously, a horrible silence filled the room and I exchanged a look with her father, sitting straight backed on the bad news sofa next to me. Here we were, sitting in the bad news room, a box of bad news tissues on the bad news table to the side of us, and this consultant was drawing as a picture with the enthusiasm of a toddler. It was almost funny. But, of course, it was anything but funny. One complete AVSD diagnosis later and I gave even less of a damn that she had Downs. Now I wanted a child with learning difficulties who didn't have two holes in her heart that would make her progressively sicker until she had open heart surgery.
Funny how having a sick child...and then a SICKER child affects you. I found myself wishing she would “only” struggle with some of her milestones, she would “only” need yearly thyroid checks and physiotherapy. I didn't want her to have a heart full of holes, so I just didn't process it at the time. It was like my brain had shut down because otherwise it would burst. My little girl, who is so strong and so expressive already would have a far greater struggle on her hands than maybe being late to tie her shoes, or be toilet trained.
Fast forward to last week. I had a call from my baby’s nurse who was covering her normal nurse for a week. “How much has she eaten today” would trigger a huge emotional catalyst that has sent me into a place I never wanted to go, for the sake of my baby and my fiance. My baby is a bit sleepy, she has a cough sometimes, she is a little pale, she has chest retractions. She gets breathless feeding and that is all at the moment. Some doctors tell me this is normal, some tell me to watch her carefully, “as long as she's not turning blue”. but how do I watch her do this for the next five months or so? How do I cope with the possibility of an NG tube being reintroduced at some point, losing the normality I have introduced to her life? How will I medicate her every day knowing that the medication is the only thing that is standing between her and heart failure? They say “you will, you have to” but how? It seems totally inconceivable.
For this battle that is mine as much as hers, I choose anything that will get me through. Pills, crying, CBT, pacing, dark, terrible thoughts that make me want to ring my mother at 4pm on a Monday and say “come, please come I can't do this anymore”. None of this will fix my baby, so none of this will fix me. We are linked, she and I, beyond anything I thought possible and my heart is broken until hers isn’t anymore.
Having a chronically ill child is like travelling on a plane to somewhere far away. Say you've decided to move to another country, it's your life's dream and finally you're doing it all by yourself. So first of all, your plane is diverted somewhere, there is a delay, some problem crops up. You’re waiting in the airport at 2am and you're already tired, but you're excited still because you still get to go and you’ve been preparing for a long time.
You get to your destination, you're really jet lagged but it's so beautiful, it's everything you were told it would be, even though your driver didn’t arrive at the airport and you’re only passable in the language. You’ve muddled through and got this far on little information and your own intuition but you’re a bit less jet lagged now, your mind is clearer.
You’ve started to feel quite alone and a bit scared because you've just looked at the news and worked out that there's some natural disaster that might be happening in a week or so. You should be far away enough for it not to bother you, but remember, you don't speak much of this country’s language so you just don't know. You rely on Google to tell you and that scares you more often than it reassures.
The locals are kind, but busy and communication is difficult. And anyway, this was supposed to be your life's dream so you are reluctant to ask for help anyway. You don't want to feel like you’ve failed in the only.thing you’ve wanted as much as you do this, but sometimes, even if you can't admit it to yourself,you just want to go home.
For anybody that tells me I am doing an amazing job, I'm coping so well etc, I'm really not. I'm trudging through each day that brings us closer to the best solution we are going to get and hoping it doesn't drive me mad in the process.
I'm rambling, but it helps, I think. Things are still beautiful, sun and water still make rainbows, even though I can't really see them right now. In time I can only hope I will again, on a little beach by a river, this time, with a very wet dog, my husband and my precious daughter by my side.
31-35, F
