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21 months and loving aunty chewy x

Excited for grandma and grab dad's 35th wedding anniversary PARTEEEE!

21 months, tonsillitis, straight hair and vocab gone wild.

One month

One month of knowing and learning to accept and learning all about what CGD means for you, and for us. You're doing well and I think you are back to your former mischievous glory! It is a beautiful thing. We missed you when you were in pain and miserable and fed up. You are sleeping better and are not as clingy to me. And I am back to work after 7 weeks. I like normal life ever so much. We have met with Dr Hackett, your immunologist at Heartlands Hospital, and he said you're doing great, you've had THREE abscesses drained now and hopefully (fingers, toes, eyes crossed) that is it now. 6 more weeks of antibiotics for now. And then on to prohylatic. I hope we get to go to Great Ormond Street soon and can things in motion. I pray we can find you a bone marrow donor and can get you cured. My sweet babe. You are everything x

20 months/Aunty Gemma's birthday/park fun with grandma/you are a fruit bat

Bubble joy/slight fear!

20 months of loving you

Despite six weeks on and off in hospital and 3 operations, you are astounding us with your development, especially your speech which has come on leaps and bounds. You copy words brilliantly and have a wide vocabulary which includes a few favourites: - turtle (pronounced tutle) sooo cute - Mick mick (Mickey Mouse) - Bob (the builder, usually used when referrer to your Bob dressing gown which you are very attached to) - drink - peaseee (please!) - MUMMY (my favourite of all your words & your most used! Finally!! You refer to Buckley the dog as buck buck, and grandma has trained you to tell him to 'shoosh' which you find hilarious (& so do we). You can name all your vehicles such as dig dig the digger, planes, trains, cars and taxis! Your imaginative play has also developed loads and you play happily alone, walking your animals or flying your helicopter or plane. Most things become rockets that whooosh into the air. You like to fall asleep holding your cup or water bottle. Videos to follow!

The stages of grief are many

I went for a walk today with you, to the pond. We saw the baby signets as we drove past earlier and I was desperate to see them in the flesh. We got there and the pond was a ghost town, clearly tired baby swans need their rest. We walked around, you and I, alone. You sang and cuddled your blankie. I walked past a girl I went to college with. She walked with her friend and both had a baby and husband in tow. I walked alone and sad. No rings on my fingers (they're in a hospital bag somewhere). I felt so sad walking past happy families, dads walking their daughter's around the pond, children on bikes and babies sound asleep in prams. No cares or worries, except perhaps whether their baby will sleep through or what to have for tea. A normal life seems foreign and surreal and a complete dream. I am so jealous of people who have healthy children, who have normal lives and normal worries. I feel as though we will never be those people. I am coming to terms with your diagnosis. It is x-linked and though I knew this in my heart, it was a hard thing to hear. I feel guilt and anger in equal measures. It is not hereditary, meaning my mum is not a carrier. It is a mutation that started with me. That has been hard also. What are the odds of that? Of any of this? It all seems so unfair. We are off to hospital tomorrow and you will more than likely have surgery to drain another abscess. My return to work seems less and less likely. Please know this, sweet lamb, I would rather be with you every minute of the day, but I crave normality. When I go back to work, it will also signal your recovery. I long for these things. Caleb, I love you so much. You are an inspiration to us all. I hope you read this one day, cured from CGD and know that we love you with our whole hearts. You are EVERYTHING. Mum x

#cgd #cgdawareness #primaryimmunedeficiency #19months

29 April 2015

Two years ago today we had our 20 week scan. We found out that you had 'boy bits' and that everything looked fine. Today, we found out that you have an ultra-rare genetic immunodeficiency called CGD. It has been without a doubt the toughest thing to hear. A lifetime of antibiotics/antifungals/hospitalisation or a bone marrow transplant. My feelings of devastation match those of your father and grandfather. Your grandma knows now, I am sure, and her heart will be well and truly broken. Please be strong Whaley, and I promise with my whole entire heart that I will make sure your life is filled with joy and happiness and more love than you know what to do with. I love you more than I could even put into words. Mum xx

One and a half times round the sun

Dear Caleb, You are fast approaching 18 months and your personality grows and shines more everyday. You are constantly on the go, charging around the house or park or shops! Playing with anything you can get your hands on, often with a mischievous glint in your eye and a keenness for the unobtainable. You test your boundaries and more often than not ignore me when I tell you not to do something. You definitely don't like being told not to do something! (Cue angry toddler face and/or dramatic tears). You love: Your 6ft blankie Meat Pulling your ear and saying 'eeyah' (this is often the first thing you do in the morning) Milk out of a straw cup but definitely not a cup with a straw in (go figure!) Postman pat (you say pat pat pat very quietly every time you see him or I mention him) Throwing straws (you have just learnt to throw) Being outside The park (but your attention span is so short you can't commit to any apparatus for long, although the slide is a clear favourite) My tummy (skin in general) WHEELS You are fully weaned and mostly sleep through the night. You can put yourself to sleep great and self soothe, although you wake for a big drink of water. You had an eye test as the gp thought you may have a squint. Turns out you have a pseudo squint which is the best kind of squint because it doesn't exist! Because of your dad's bad eyes though they're doing a follow up eye test in August to check your eye sight is good, but as of now it's above average. Go whale! You are hopefully starting nursery on 7 April and will be doing 2 days a week (mon&tues) there and weds&thurs with your ever-adoring grandma. Hoping you have the best time my sweetest pea xxxxxxxx

March 7

It's been two years today since I got a phonecall with the results of your nuchal fold test. I'd been in our Committee at work and got a voicemail to call the prenatal testing team. I immediately knew. You were high risk for Down's syndrome. 1 in 95 risk. Anything over 1 in 150 is classed as high risk, with most mothers my age (29) having a risk of 1 in 1000. I called your grandad and sobbed, called your dad. Drove home hysterical. Mum and dad and Charlotte pulling up at our house as I got home. Your dad quiet and numb. I needed to know. I googled and googled and read reassuring messages of mums with similar high risks (and higher) who had perfectly healthy babies. I sobbed all night. I couldn't talk. I was SO scared. What if you were ill? What if you had problems/delays? What would it mean for you? For us as parents? The next morning we went and met with a nurse. A very to the point nurse who explained our options. Too late for a CV, but we could have an amnio to test your amniotic fluid and find out for certain. But there was a risk. A 0.5% risk that by doing the amnio, your sac wouldn't reseal and we would lose you. Your dad said on the way to this meeting the very words I needed to hear. He said that we would love you whatever. That we would never get rid of you. That we would only love you and support you and consider ourselves blessed. And so actually it was an easy decision. We went ahead without an amnio. And we were right. We will love you whatever and you are beyond perfect xx

Learning to run, no attention span, constant chatting, embracing a tight perm. Oh to be 17 months!xx

#17months

Ps

Your dad has taken up knitting!

17 months

We have been through so much together, little one. Your bravery and resilience and beautiful spirit makes me proud(er) everyday x I adore every single thing about you and am beyond grateful that you are MINE everyday xxxx

#17months curls for days, a whirlwind of energy and mischief and I love you more every day x

16 glorious months. I love you sooooo much xxx

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