Reflecting on my first year as a mum, is not at all what I expected motherhood to be. It not the kind of motherhood I dreamed about for 9 months, envisioned growing up or ever witnessed.
I’m drained. I’m exhausted. I’m surprised I’m alive.
I’m not surprised I’m alive because I’m suicidal. I’m surprised I’m alive because it feels inhumane for someone to get through the emotional, psychological and physical knocks I’ve had one after the other throughout the last year.
Let’s add up the knocks;
- Baby Jaundice
- Hernia requiring an operation
- 6 day old baby rushed to A&E floppy and unresponsive
- Positive CMV urine sample – a condition known to cause disability
- Blood tests show liver dysfunction
- Kidney scan shows bilateral grade 4 kidney reflux
- Heart scan shows a hole in the heart
- MRI shows two cysts on the brain
- Feeding difficulties breastfeeding
- Continual weight loss
- Failure to thrive
- Inability to manage electrolytes potassium + sodium
- Repeated urine infections resulting in problems feeding and hospital readmission
- Bronchitis requiring high flow oxygen + continuous feed
- Diagnosis of a hypertrophic obstructive cardiomyopathy and hearing the words “he’s at high risk of sudden death”
- Stopped feeding by orally – solely tube fed through a nasogastric tube
- Genetic tests result in the diagnosis of 1p36 Deletion Syndrome
- Vomiting all feeds, further weight gain problems
- Operation for fundoplication failed
- Two cardiac arrests during failed operation
- PEG fitted for permanent tube feeding via gastrostomy
- Continued vomiting resulting in weight loss and trauma
- Failed circumcision results in bladder retention and need for another operation
- PEG/JEJ to prevent vomiting
- Still vomiting
- Further genetic testing results in diagnosis of Baarters Syndrome
- Heart scans have progressed each month from one side of the heart enlarged, to both sides, to the entire thing being massive
Lets add a relationship breakdown in there (there is no longer an engagement ring residing on my left hand as pictured), homelessness and fighting for support. All within 365 days.
There’s such a lack of services for a person in my position. I was asking for counselling in hospital for months. They had nothing to offer me except a nurse if she had a free minute.
I was getting knocked left, right and centre and desperately needed a qualified psychotherapist with a structured method to help me deal with the grief of losing the life I had known and the non-existence of the one I was expecting for 9 months. When I eventually received counselling 9 months later, I found I’d already dealt with it – I’d had too.
When we had brief home stays I was informed of a special needs playgroup that I was eager to attend to find our normal but it was early in the morning and his appointments followed by his night shifts killed me. When I had a free morning I needed to sleep. Then before we knew it we were back in hospital. Always in a side room which I won’t complain about but did restrict meeting other parents.
The groups I tried to join for support were fabulous but I couldn’t seem to fit in enough to relate anywhere. No where could I find someone enduring what we were being put through. The only place I found therapeutic was my own Instagram account.
It’s not fair.
He’s one year old and we’ve been out of hospital for 16 days. I’ve had him home maybe two months in total out of the last 12 months. We’re home now and I’ve only just learnt about cot bumpers. I’m still ordering things like an umbrella for the pushchair. His bedroom is not decorated or furnished. I go out and forget milk. I run out of nappies. It’s like taking a newborn home all over again.
Honestly, every day is a fight for survival.
Thats not an exaggeration. My son is fed through a pump 21 hours of the day. 13hours and 15 minutes overnight. He has a break 7.15am-8am. Then a 4 hour feed. A 1 hour break. Another 4 hour feed. Another one hour break 5pm-6pm. Then the whole cycle starts again. He has medication at 7am, 8am, 1pm, 2pm, 6pm, 8pm, 10pm, 10.30pm. Plus medication added to 4 feeds. During the day he has water pushed into a tube going into his stomach during his midday break and evening break. Then overnight he has this every few hours.
Alongside his feeds and medication he requires physiotherapy input from me as at 6 months old he still had very little head control and at one year old he still can’t sit up or roll onto his stomach. This requires hours of encouragement, of repositioning, of distracting, of persistance. A lot of the time, for no return.
Then when he’s not in hospital its blood tests every week and appointments with his neurodisability consultant or his nephrologist. Or his cardiologist from Leicester. Or his cardiologist from Great Ormond Street. Or the opthamologist. Or an appointment with Speech and Language Therapists. Or physiotherpists. Or occupational therapists. Or the dietican. Or the geneticist.
Other times it’s his community nurse or the bereavement nurse coming to check in on me.
Me? What about me?
I had so many plans for maternity leave. Those days when I was expecting a healthy baby. I was going to do my driving lessons and get my licence. I need that now more than ever but I don’t have any time around Jaxons care. I was going to perfect my Spanish with a language course. I was going to take Jaxon on his first holiday whilst I had minimal luggage as I breastfed. I was going to get back to pole fitness. I was going to be a lady at leisure and a cool mom. Oh what a dream.
People say they don’t know how I do it. I don’t know how I do it. All I can tell you is that if it was your child, you’d do it too.
Nobody wants to be me. I’m the person people pray they don’t end up when they’re pregnant. I didn’t expect any of this. I wasn’t prepared for this. How do you prepare for this?
It’s been a whole year. Reflecting is hard. I want to shout and rave about how amazing it’s been. I would hate for Jaxon to know how much this breaks me. I look at his face and mine lights up. I hope that’s all he sees, his mummy super happy.
I want to write a really positive blog telling him how strong and amazing he is, but I fear he’ll never be able to read. Just like during the stay and play at a local nursery when a little girl wouldn’t stop staring at him and I feared he’d never have a girlfriend. Silly? I fear so much. Not normal mums fears. Very real, likely, fears. Will he ever walk? Will he ever be ‘able’? Will he ever talk? Will he ever be independant? Will he ever eat? Will he make it to adulthood? Will he make it to his next birthday?
I run on hope. I live for hope. There have been times this year I’ve been out of hope but you have no choice but to keep going, running on nothing because your child needs you. Not in the way any baby or child needs their mum. In a way that if you give up, if you take a break, if you crumble, they could die.
Nobody else knows or understands him well enough to care for him. Everyone is scared of the feeding pump, scared of the medication, scared of his choking, scared of his heart. Scared of the responsibility. The responsibility that I carry every minute of every hour of every day. I feel like I’ve lived a lifetime in one year. Hope is a driving force. Hope can bring light into the darkest of spaces.
I hope and I pray this is behind us. I hope and I pray that one day I’ll look back and release a sigh of relief that it didn’t last forever. I hope he’ll talk. I hope he’ll sit. I hope he’ll walk with his head held high. I hope one day he can read these and we can talk about what a miracle he is for defeating the odds.
I hope he doesn’t leave me too soon. It’ll always be too soon.
You wouldn’t wish a sick child on your worst enemy.
As we approach the end of the year, I still have so much to learn. I know there are more obstacles ahead. I know there will be more challenges ahead. I expect more heartache. I’m just hoping we get bigger breaks in between.
For a more detailed overview of our year, check out my post ‘Nobody told me my baby would have this many problems’ on the award-winning blog that is Kiki Blah Blah. Alternatively, you can read back on my 30-odd blogs on kayteejones.com for real time thoughts and feelings event by event.
Thank you for reading.
If you have any thoughts or feelings reading this blog post. Drop a comment below. I love the messages I get about my blogs but they do get lost in the inbox. Posting them on the actual blog allows me to save and remember them.
Sidenote: I’m so grateful for the support we have through social media and sharing our story. The parents who have been doing this for years amaze and inspire me. The people who are not at all affected by health issues really fill me with hope. Parents of children with disabilities are struggling, a lot. It’s overwhelming and unfair. It’s exhausting and a constant battle. We need those who are not affected to care about us, to try to understand and show compassion. There are many things that need to change but we are so busy advocating for our childs health, we are unable to advocate for ourselves. If you think you can help, try.