Just a spoon full of sugar….. 

Helps the medicine go down, in the most delightful way!! 

With Dylan’s 5th birthday fast approaching I thought it’s time to gather my thoughts…… 
Our little boy is hitting a milestone that not only feels like it’s taken over a million years to arrive but one that we are more grateful for than anyone would ever know. For our sick little boy is a true fighter, has defied almost all odds and still surprises us every single minute of the day. 

  
Some of you know that recent news is our immune suppressed little boy’s immune system has worsened and he is due to start a new treatment at GOSH next week. Hoping it’s only a good thing as can and will prolong his life making the most difficult time – Winter, when germs are flying about much safer for Dylan and for him to be able to sail through (PG). But the downside it having to perform an IV treatment on a little boy how has literally no access (veins for drip), who currently has no central line, who urgently needs this intravenous drug. A drug made of human blood which will be required on a weekly basis. All very scary stuff with potentially scary side effects for us as parents to endure. My only saviour is that Dylan’s limited understanding means he has no idea what’s in store. What’s sadder is that after four previous birthdays Dylan has no understanding of what’s in store here either- all the good stuff, balloons, presents, cakes……. No. Idea. 

  

Raising a child with special needs especially one who is undiagnosed is both a challenge and a blessing. Challenging as no one has ever seen nor treated another ‘Dylan’ and a blessing because you don’t know the depths of victory until you see your child achieve and overcome milestones that most other parents take for granted with healthy children and these are what take so much longer to achieve and are so much more challenging but he does it and in his own time. After all it’s ‘Dylan’s Story!’

  
So with no immunity and no understanding the only choice is a family gathering at ours. Where Dylan is the happiest with his favourite people. Which leads me onto my emotions…… Whilst they are running high here are my top five factors about being a Special Needs Mom for the last five years. 

  
1. It’s a very lonely place raising my son. You wouldn’t think so the amount of people I communicate with on a daily basis about Dylan, the GP, Community Nurses, Phlebotomists, Consultants, Clinical Nurse Specialists, Inpatient teams, Outpatient teams, Physiotherapists, Occupational Therapists, Speech & Language, Educational Specialists the list is honestly endless with probably near on 50 health care professionals, attending appointments, managing Dylan’s Diary! In a day I do a whole lot of talking, mostly about Dylan but it’s lonely parenting a special needs child. I feel like an outsider around mums of typical children. I feel out of place hearing (please refer to point 5 I am not bitter and not jealous it’s just something too difficult to properly explain) mums talk about their 2-year old with a vocabulary of 100 words, their 4-year old starting Reception and now their 5-year old going into year one. I’ve been there with my daughter and your milestones are humongous to you as they were with me for Scarlett but just not with Dylan. It’s great for you but it’s so not what my world looks like. But the sanity comes in the shape of Facebook being part of groups of other special needs mums (SWAN UK mostly, Syndrome Without A Name) with whom, it’s comforting to exchange stories on tube feeling, medication, pain, therapies and therapists, practically anything. Although not one of them has the same child, we are all in a very similar situation. We understand. But as I said, It’s often a very lonely place raising my son. 

 
2. It’s a scary place. I worry about everything these days. I worry when I don’t have things to worry about which is obviously very seldom. I worry I’m doing right for Dylan. I worry I’m doing enough for Dylan. I worry if he sneezes. I worry if he coughs. I worry if he sleeps and I worry when he doesn’t. My first major worry was when Dylan was 8 weeks old and started having seizures, they thought they were epileptic so I worried if my 8 week old would drive and then when he was 5 months old and too poorly for the general anaesthetic he urgently required I worried if he’d pull through and so on. Now I worry for his future will he walk, will he talk, not the usual things like will he be a footballer or an accountant, will he travel to Australia, will be make me a nana??? I worry how long I have him for. It’s my worst fear. I also worry that something might happen to me and I can’t look after him. I’m scared of my own shadow these days.  See it’s a very scary place. 

  
3. I am only human. Some call me a super mom, I joke and call myself Mary Poppins – practically perfect in every-way! and if I am also entertaining and cooking a 3-course meal a ‘Domestic Goddess!’ But I am only human and I don’t think I do anything more than anyone else would do given my situation. I have been challenged to my limits and even pushed beyond them raising my son. I have developed an inner strength that only someone who has found theirs would know. I have developed strength, determination and fight like no other. I have grown tremendously as a person and as a mum. But I am only human, I get the hump and can shout a lot and can get cross at the littlest of things. I want to run and hide in Selfridges and shop till I drop but I can’t, I can’t run and hide anywhere. I have dreams, all of which include Dylan doing ‘typical’ things like walking and talking. Sometimes I want to run away, but my escapism is watching trash TV and Internet shopping. Then I look into my sons eye, listen to him mutter and feel a love literally like no other and the only place I want to run is to pick him up and squeeze him. I am only human after all. 

  

4. I am tired, no I’m not I’m exhausted. Drained mentally, emotionally and physically. Being a parent is a selfless job, 24/7, unconditionally. It’s simply exhausting. But when you have the extra care of bringing up a child with extra needs, special needs, it takes fatigue to another level. It’s not just the lack of sleep for five years I’ve experienced, it’s the worry, the what if’s, the why’s, the how’s, the everything’s. The paperwork, the arranging appointments, giving medication and injections at precise times of the day, correct days of the week, recognising his cry and referring it to a particular pain, keeping him well, keeping him safe , keeping him alive. Through sheer love and determination is why Dylan is where he is today, all through eyes held open with matchsticks. Now I am luckier than a lot having a hugely wonderful supporting family and a handful of amazing friends who truly understand, offering help but I am probably too independent and rarely take it. We are also lucky enough to be part of Haven House Children’s Hospice but I am just not ready to accept respite and to add to my Mary Poppins CV from September I will be home educating Dylan (OMG) I simply love spending every waking moment (and there are a lot of waking moments!!) with my amazing little boy. He makes me laugh, he makes me cry but mostly he makes me proud. But in a tired kinda way 

  

 

5. Green Eyed Monster I am not! Please don’t get me wrong I am NOT the green eyed monster, I am certainly not bitter and twisted when I see pictures of your little darlings on Facebook taking their first steps, telling you they love you and enjoying their first days at school I am truly happy for you  But when I see a 1-year old baby doing what my 5-year old can’t do I can’t help feeling a pang of jealousy. It hurts when I see my son struggling with things that come so naturally to healthy children. I know in Dylan’s World he is happy crawling round the floor playing with his sensory and baby style toys in his 12-18 month old clothes and I am SO SO lucky to have been blessed with this adorable child. I just want to keep him. Forever. I am not jealous of you!! 

  

I am Dylan’s mummy, his carer, his nurse, his P.A., his taxi driver, I clean up after him and now his teacher and I wouldn’t change a thing. 

  

So please join me on Thursday, raising a glass (of Orange Fruitshoot if you wish) to my little Miracle Dylan who is hitting a huge milestone. His fifth birthday. One I’ve worried we may not have seen. Here’s to the next one and the next one and the next one & so on…….(PG). Be healthy my lovely little boy. Mummy adores you. 

  

But for now mines a prosecco! Cheers x

💙💙💙💙💙💙💙💙💙💖💙💙💙💙💙💙

 

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