I’ll Carry Her Forever


For as long as I’ve been a Mother, I’ve been completely honest about the guilt I’ve harboured. It’s taken shape in many a form, sought me out at some point every day.
Guilt has consumed me.

Two and a half years into my parental journey, I thought I’d learnt to tame it. Then…our world changed and I was thrust into a new, more intense and unreasonable state of guilt.

Siena was born prematurely at 31 weeks; it was her birth which triggered the most uncontrollable guilt I’d ever accosted. In the past nineteen months, I’ve encountered guilt about every aspect of her premature arrival. I’ve blamed myself continuously for her impatient entrance, convinced myself that ultimately I must have been to blame.


For a long time, I couldn’t imagine ever feeling at ease with the situation. Guilt had become a part of me – a constant reminder of my unforgivable failure as a Mother. It felt as though I’d never escape the reality of having a baby born too soon. The first year of her life was cluttered with hospital visits, stays and check-ups. It seemed that there was never very long between each date but we remained hopeful that life would eventually normalise.

When Siena was nine months old, I started to worry about her lack of physical development. Mentally, she’d shone. She’d showed signs of intelligence and astuteness but physically, she was weak. I felt guilty that it had taken me so long to spot the signs. I’d been happy to blame her slow development on laziness, always thinking ‘she’ll get there in her own time’.

Time passed and Siena remained unchanged. Deep down, I longed to live in the warmth of denial. I wasn’t ready to admit that there was something potentially very wrong.

Two days ago, she was diagnosed with Cerebral Palsy. I sat at her Paediatrician’s desk analysing the results of her brain scan. The damage to her brain was obvious. It highlighted the scan, unashamed and brash. There was no escaping the prognosis.


I’m not entirely sure I can even articulate the surge of emotions that consumed me as I peered at the white lines surrounding her brain matter. I’d known it was suspected but hearing it confirmed, paralysed me. For months, I’d fought away thoughts of ‘what if’, barricaded myself from the possibility. It seemed silly to worry myself over something that might never have been.

But there’s no longer a façade for me to hide behind.

Somewhere throughout her life, the unbearable guilt I’d once experienced had subsided. As Siena met other milestones, we’d cheered and admired her undeniable strength. Watching her transform from the tiny baby she once was to the fierce toddler before us, had, undoubtedly eased the onus I’d concealed beneath my armour. I hadn’t prepared myself for the possibility of its sharp and undignified return.

Here I am, almost twenty months after her birth, feeling guiltier than I ever have. What hurts more is accepting that this guilt will never go away.

At current, I can’t discard the feeling that this is my fault. My body should have been stronger. I should have waited longer between having children. My diet could have been healthier; I should never have forgotten to take folic acid tablets some nights. The iron my body couldn’t absorb, I should have increased it through nutritional rich foods. I shouldn’t have carried heavy objects, should have rested more and for longer. There’s a million ways I could have triggered Siena’s birth – a million regrets I have to live with each day.


If Siena can’t walk, I’ll feel guilty for inflicting disability upon her. If my own body hadn’t failed, her body wouldn’t have either (not that I see disability as a failure…I’m desperate to make sure I protect her from such views).

When she returns home from school crying that she’s been teased for being different, the guilt will kill me inside. I want her to have the confidence to understand that her condition doesn’t make her different. I want her to have the tenacity to educate those around her whose ignorance could hurt.

If Siena comes to me bearing heartbreak that the boy she fancies won’t return her feelings, my heart will shatter. I want her to see the beauty I see, to have the self-assurance and worth not to chase those who don’t deserve her heart.

I once said that I was desperate to chase fairies with her, I feel guilty that I no longer believe this might even be possible. I want to be positive for her, stronger than I’ve ever been but I also need to accept that the stark reality of her future may not allow this. Like every Mother, I had dreams and ambitions for her -I had a preconceived vision of how her life would pan out. Right now, I no longer know what to dream. I don’t want to set unrealistic aspirations which may pressurise her but I don’t want to sound like I’m giving up on her either. I’ll never give up on her!


I’m frantic for her to know that I’ll never let her fail. I have to believe that she’ll be capable of achieving whatever she sets her heart upon. I’ll be there beside her to push her and guide her as much as I can. I won’t let her feel vulnerable by her condition; I won’t let her wallow in unnecessary self-pity.

I’ll carry her burdens so that she doesn’t have to. I’ll carry her worries and anxieties so that she can be free from doubt. I’ll carry her troubles to ease the weight on her shoulders and if she can’t walk, I’ll carry her through life – wherever she desires.


Cerebral Palsy will not define her, shape her, mould her or restrict her…it may be an additional challenge but we’ll conquer it together. Of that, I’m sure.


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You’re Ready

  

  
Okay Dolly, here it is; I’m sorry but I’m putting and end to my ‘no rush’ policy. I warned you a while back that it wasn’t working for me any longer. Well,  I can now see that it’s no longer working for you either.

I have to admit, you’re not a baby any longer. You’re not my delicate, tiny, premature baby any more – you’re my ferocious, determined, joyful toddler! 

Somewhere within the past two months, you’ve flourished. Somewhere within the past two months, you’ve decided that you’re ready.

I wish I could take the credit. I’d love nothing more that to say ‘yes, she finally listened to my pleas’ but I can’t deny, your inner-strength definitely had something to do with it.

You see, two months ago, we were told you had cerebral palsy. One dismal afternoon, we headed to an appointment with a bone specialist. You’d been diagnosed with spastic hips and we’d been informed that you’d most likely require hip surgery. In comparison to the heart surgery you’ll undoubtedly require, this seemed nothing. I headed out that morning excited for answers, giddy about having a plan to move you forward. 

It didn’t go to plan.

The specialist examined you within minutes. His hasty approach made me feel even more relaxed – I believed it must have been simple. Eventually, I felt as though something had transitioned smoothly. I sat confidently awaiting his diagnosis, convinced he’d agree that you could be fixed so easily.

I should have known, noting is ever as easy as it seems.

‘Siena’s problems aren’t physical, they’re neurological’ he brazenly uttered. To him, this revelation wasn’t anything new. It didn’t appear daunting or unusual. To me, it instilled fear right into the core of my being. It paralysed me momentarily. I wanted to vomit.

I don’t know why my reaction was so strong; we’d known that there was undoubtedly going to be some backlash from the bleed on your brain at birth. However, for seventeen months, it had been so easy to convince ourselves that these would be minimal. 

  
Especially at the start! You’d met most milestones easily within your adjusted timescale. Doctors had been pleased with your development, we’d marvelled at your tenacity and prevailance. Other than your size, you competed with your friends. You were eager to be a part of the game.

At nine months, we registered that your physical developments were slowing. You couldn’t roll, couldn’t sit, couldn’t maintain neck muscles for a prelonged period of time. ‘She’ll do it when she’s ready’ we’d repeated – half convincing others, half convincing ourselves. However, internally I knew something wasn’t right. At your nine month check up, I insisted on physio. Luckily, your paediatrician took little persuading. He sensed it too, he recognised you needed help.

At seventeen months, physio seemed to have changed nothing. For eight months, I tried to maintain my patient stance of not rushing you. There’d been fear of hurting you, fear of pushing you too far. Nonetheless, I’d remained desperate for you to flourish.

The diagnosis of cerebral palsy had seemed so daunting to me initially. I didn’t know what it would entail, what barriers you’d have to overcome. The notion of stepping outside of our comfort zone knocked me. I had only just adjusted to all of the other challenges you’d thrown our way.

  
Naturally, your paediatrician had wanted to explore this further. Our last meeting resulted in many more medical appointments – weekly intense physio, hydrotherapy, portage, speech therapy, an eye exam, a kidney ultrasound and scan and an MRI to be precise (hopefully, the MRI will confirm the true diagnosis of your neurological ailments). To say this was overwhelming would be dressing it down.

But, it was exactly what we needed…a plan to rush you! 

I think you sensed it, I think you understood that this was your warning to step up your gain.

  
These past two months, you’ve uncoiled. Like a young bud in the springtime, you’ve opened your petals and revealed your true beauty and strength. It has been  miraculous. 

Within two weeks of your appointment, whilst celebrating your friend’s first Birthday, you chose to sit unaided. It was as if you looked at your fellow peers and finally decided, you wanted to join the party.

Almost two months on and the transition has been impeccable. Tonight, you sat upright in the bath for the whole entirety. You held your hands out and splashed your brother playfully, you sang to the tune of ‘twinkle twinkle’. 

Your speech is developing so quickly, in a way which is no longer mimicking your brother but in a way which is meaningful. You tell us when you’re hungry, when you want juice, a dummy or bed.

I can see you pushing yourself to limits you’d once found incomprehensible and I couldn’t be more ready to push you more.

You’re nineteen months old already. Nineteen months old and still sleeping in our room. Nineteen months old and I can’t seem to part with you being by my side. Although it pains me to admit that this can’t last forever, I know that I’m reaching the point of letting you blossom.  You’ve shown a desire to be more independent and I know that this is something I must encourage, not hinder.

So, be warned Dolly, I’m relinquishing my control. Now that I know you’re ready to push yourself, that ‘no rush policy’ is limited in its existence.

I no longer worry about what your future holds. Whether your developmental issues are cerabral palsy or some other condition of your premature birth, I know we can succeed together. You’ve the power to overcome any obstacle, the passion to thrive.

I’m so proud of the charismatic, charming but boisterous little girl you’re turning into.

I can see now, you’re ready.