Allergy fun…..when all the best plans…

This weekend we had the total privilege of witnessing the marriage of one of my longest standing friends. It was an amazing weekend, but that kind of event for us always comes with a few stresses.

Our friends were amazing in their catering planning for the weekend, providing lots of food for me to eat with my allergies, and lots for my eldest son too. We had agreed in advance we would provide the food for the toddler, as we know it is hard to cater for all his allergies.

So with all the best laid plans, there also comes for me a level of anxiety as to the what-ifs that can happen. And we survived the first 24 hours without a hiccup. But with 21 other people around, who are aware to a point, there is always going to be a degree of risk. With a mobile toddler though, you at times need eyes in the back of your head!

We don’t know what, or when, our little guy picked up something he shouldn’t  have, but somehow he ate something he was severely allergic to. An unhappy, itchy baby was bad enough, but the sickness that followed was on another level. I was so grateful for the help of new, but wonderful friends, who jumped up to help so we could sort out a very unhappy little boy.  As ever what amazed me was once his system had rid itself of the allergen, and he was cleaned up, out little boy was back to his happy, chatty self! He tucked in to more, safe, food, and merrily chatted away to people.

We will never know what he ate, if it was a known allergen, or a new one, and that makes it tricky, but what I am learning is that we can only do so much. There will always be a time when there can be errors and slip ups. We try to minimise the risk as much as we can, but we also want our little boy to enjoy life and have as many similar experiences as other children as he can. But we will also spend time raising awareness with others about the dangers of allergies.

No, he currently doesn’t have an epi pen – as currently all his known allergies are non-IGE. But that doesn’t mean one day his allergies won’t become IGE and result in anaphylaxis. It also doesn’t mean that even a small bit is ok. Too many times we have heard people say, “well a small bit can’t hurt can it?” The answer is yes, a small bit can do a huge amount of damage to his gut. As an example, testing mackerel – just a teaspoon of it – resulted in 4 weeks of his tummy being unable to hold any food!

Things are not going to be easy for a potentially long while. I will permanently be grateful to our child minder, who provides him with a safe environment which he adores. To friends who help us have safe play experiences. People who will have him to stay and even provide him with food, which is not always the cheapest or most straight forward option.

Living with allergies and living with a child with allergies isn’t easy, but it is what it is. What I am learning on this journey, is that I need to stop letting people make me feel like it is an inconvenience,but it is ok to be honest and say it is a problem.

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When you just want to make it all better

Some of the toughest days as a parent are the ones when you can’t take away the pain that is making your child hurt. Whatever age, your gut instinct is to protect them and to stop pain.

For nearly 3 weeks we’ve had to deal with the aftermath of the worst allergic reaction with our toddler since they realised he couldn’t have cow’s milk. The biggest problem this time has been that it totally unbalanced his gut. So we’ve had a very unhappy little boy. All because of a few mouthfuls of a new food item – mackerel!!

It has been so hard. You can’t explain easily to a 16 month old that they are going to feel sore. You can only hold them, and at times feel pretty useless that you can do no more than provide cuddles. Encouraging him to eat, when he knows food is linked to some of the pain he’s going through, is tough. But knowing that he needs to eat to have the energy to get better makes it harder. You do all the right things – staple foods, probiotics, water, cuddles, sleep – but it doesn’t make it instantly better.

And then you have the debate and juggle, do we leave him and go to work as normal, or do we stay at home. I know we are blessed with a fabulous childminder who provides him with the most loving environment, and my in-laws who adore him too. But it doesn’t make the choice easier or stop you, as a parent, worrying when he’s not with you.

For me it is one of the juggles I will always struggle with. In fact I struggle with it with both of my boys.  Do I send the older one to school or not? It’s always a balancing act. I don’t think it gets easier in some ways as it is different decisions with different impacts, but you still always want to get it right and to keep you child free from harm.

So there will be days when I can’t take the pain away, but as I mum I will always provide the cuddles.

The look of peace

Today I had one of those treasured special moments, that after 14 months is already becoming less of an occurrence. In fact this was the first time it had happened in a few weeks. My little boy curled up in my lap and fell asleep. I loved just watching the look of peace wash over his face as he dropped into a deeper sleep. It seemed a long way from the little boy who 30 minutes earlier had been emptying the bookcase at a rate of knots to find his favourite lift-the-flap book!

It was so calming to watch too. For a few moments i just treasured the peace. The calm. The quiet. Not times that regularly occur with our delightful, lively little boy. It surprised me at how much I had missed those snuggly moments of a newborn sleeping on me.

The flip side to this is actually I cherish the moments that he is asleep in his cot. It took several weeks of perseverance and feeling like it was never going to happen before we got him sleeping in the cot, and then longer till he would fall asleep in the cot. I knew we needed that to happen, for my sanity and for our life as a couple and our time with our older son. Looking back, now, I know some of it we bred ourselves. It came from a place of love, of exhaustion, and of wanting to protect our fragile tiny baby, who had had so many challenges put in his way, that we didn’t want to add another. A sleeping baby means I can have an hour (or 2 if i’m lucky) where I can have some me time, catch up on work, do some housework. It means I can recharge my batteries for the next stage of the day.

I find the constant need to be entertained draining. I adore my sons, but I am so very aware about how much space and time I need for me. These days it often means going to be before 9.30pm, just so I can curl up with my book for more than a page before I fall asleep. I know my time for knitting will return in time, and that I also wouldn’t change where I am in life for a moment. My writing is my space to express, and to be me. So here you go. Peace!

Parenting guilt

One thing I’ve realised the second time around is the amount of guilt I carry as a parent. It isn’t across 1 specific area, in fact it’s across all areas and with both boys!! I feel guilty that I need to work. Not for the money so much, but for me, for my sanity! I then feel guilty that I am enjoying my work and my time away from being mum. I even don’t have a problem with doing extra hours, until I feel guilty that I’m not at home being mum.

I feel guilty that my husband has been so amazing at getting up in the night, as we have discovered that not getting enough sleep is causing me to have more migraines. I feel guilty if I go out in the evening and then the baby decides that is the evening to not sleep, so my husband gets no peace.

But I also feel guilty when I am at home spending time with the baby. I feel bad because all it seems I am doing is playing. I’m having fun…..exhausting fun, but fun. I feel guilty that the baby takes the attention away from the teenager, and guilty that the teenager takes the attention away from the baby.

I know, as I’ve said before, that I am an anxious parent. I know because of this I constantly seek affirmation and reassurance that I’m doing the right thing. I am the kind of person that thinks if I have inadvertently offended someone they will hold on to it and hold it against me for weeks. Or if i’ve forgotten something it will be catastrophic and I won’t be able to move on. I know all this about myself and know it affects my guilt too.

I think I also know there is no perfect work life balance. I will spending life knowing i’m not always getting it right. I just need to learn to accept that I am a normal person, who will make mistakes.  My boys love me, I know that. I just have to relax and accept that I can only be the best I can be, and that that is enough

“There will be so many times you feel like you’ve failed.  But in the eyes, heart, and mind of your child you are a super mom.” ~Stephanie Precourt, Listen to your Mother

How many allergies?? Not sure but I hate them all!

So in my family there is a bit of an allergy history….quite a big bit. But I’ve been lucky. My allergies are pretty minimal, I only have 1 severe allergy, and a couple of bad intolerances. My eldest son has a dairy allergy/ intolerance (they keep changing the boundaries and terminology) which means even at 15 he still has to restrict the amount of dairy he consumes. But that is manageable. 

So I wasn’t too surprised when at 3 weeks old our baby started reacting to cows milk. I then cut all dairy from my diet and the baby was much happier. Unfortunately due to the baby being ill, we had to start introducing bottles. We started with lactose free milk, and within seconds of finishing a bottle, he would bring back milk like when a drill hits oil! He wasn’t gaining weight as they expected him to. The gp prescribed him Nutramigen, a formula that it’s a very broken down version of cows milk. We saw an improvement to the amount of milk he managed to retain, and his weight gain increased a bit. After 3 weeks his formula had to be changed due to a production issue. He was put on Neocate. A formula that has no cows milk in at all. Just amino and fatty acids. Wow! What a difference! All his milk stayed in after a feed! And his weight soared! 

I can deal with a Cows Milk Protein Allergy (CMPA). Everything we eat at home is dairy free anyway. But the allergies haven’t stopped there.

So far we’ve identified at least another 3! We thought the baby had his first cold. But it never seemed to stop. His nose was permanently full of gunk. We then noticed whenever we went out his eyes would get all red and puffy and he would be scratching at them. Overnight his struggle to breathe got so bad he would stop for a couple of seconds before starting again. Scary as a parent.

The gp diagnosed hay fever, and he now has to take piriton daily, and his breathing can still be a struggle. At night we now have to keep our Windows closed, we have a fan with a hepa filter to clean the air, we have a vapouriser on, the crib mattress is propped up and we have to use nasal drops on him during the night. The doctors are reluctant to prescribe more till we see the allergy clinic. My nights are constantly disturbed due to listening to him breathing and hearing when he needs more nasal drops or other help. 

Ok so CMPA plus hay fever, I could deal with that. He had slightly dry skin so started using bath and body wash products that were meant to be good for eczema and sensitive skin. He reacted to it on contact! A red rash appeared all over his skin. Hmmm back to the very expensive stuff then. And another allergen to add to the list. 

3 allergens, I could cope with that. Then, last week, sitting holding our baby asleep on me I noticed wherever his skin was touching my top he was coming up in an angry red rash. By the time we got home his back was so sore and angry. I put him straight in the bath, and we think he was reacting to the fabric conditioner we were using. We’ve stopped using it instantly, but as I realised yesterday when he flared up again, all of our clothes need to be rewashed. 

It’s a challenge daily. The portion reduces the hay fever reaction but hasn’t eliminated it. Daily he can come home from just walking to the shops with red, puffy and itchy eyes. We’re having to reintroduce scratch mittens to stop him scratching himself at night.

As his mum it is exhausting. Although he is “asleep” for between 10 and 11 hours each night, it’s not deep unbroken sleep for him or me. At times I find it frustrating as I don’t know what he’s reacting to, especially when he has a contract reaction. I’m grateful for the nhs, but get frustrated by it too. Waiting for referrals and appointments, and feeling like we’re constantly at the gp. 

I know I’m not the only allergy parent. And I know that some parents have it far worse. I’m grateful for the online support I get from some forums, and from a couple of friends who lives miles away but understand my struggles. But it isn’t easy. 

The beautiful parenting bubble goes pop!

When you are planning a family you have your dreams, your ideals, your perfect scenario.

  • The perfect gap between children – I’d wanted 2 years between mine
  • The perfect family set up – 2.4 kids, nice home, be around to support your children as they grow
  • The perfect pregnancy – blooming for 9 months
  • The perfect labour –
  • When your child is born the perfect baby – follows routine, eats well, sleeps well, meets development stages full on
  • You go out each day doing all the perfect mummy things with a perfect outfit, make up and hair

Hmmmm…..the reality is miles away from this.

I will hold my hands up and say that my dreams, even the second time around, were up there. Maybe I should have known better. Maybe some of my memories from 15 years ago had faded and gathered a rose shaded tint over time. But also I know I was lucky the first time around, I had a baby that slept well, was healthy and incredibly placid as long as the milk came on time!

This time, I am holding my hands up and saying yes I have been struggling. My perfect bubble has definitely gone pop…in fact it was a very loud BANG!

3 hours of uninterrupted sleep is now a luxury. The few nights that have been longer than this we can now see have been more linked to when he’s been on antibiotics. An achievement at the moment is being out of bed in the morning and showered before my husband leaves for work….if I don’t do it then, then it won’t happen till he is home in the evening. Getting dressed in something that is clean and reasonably appropriate for the weather is about all I manage. If I’ve had a reasonable amount of sleep, then the hair dryer might get out, and I might find my way to putting make up on. But that is certainly not the normal routine. High days and holidays maybe!

I have struggled with almost weekly appointments at either the doctors or the hospital. Having a little boy who isn’t 100% most of the time is tiring. The money spent on hospital parking is just frustrating! Having to constantly explain again and again symptoms to doctors is exhausting, especially when they say that “babies this young don’t get recurrent infections like this”. Each week I have to also remember to order the next weeks supply of formula. I have a baby who is even more allergic to dairy than his older brother and his formula has to be prescribed. Its not like I can  just go and buy some formula when we get low, and more often than not the pharmacy have to order it in. I even had to justify why I needed twice as much, to cover us going away and the bank holidays!

I look at the house sometimes and just want to cry at all the jobs that need to be done. I hate that in the evenings I am snappy at my husband and teenager because I am so tired and just need some head space. Going to be at 9pm is not my ideal, honestly!

Yes this is the reality. I wouldn’t be without my baby for anything. I’ll even consider having another in the not too distant future (not the next 18 months, but not another 15 years!) The reality is I find day to day tough. Some days are better than others. Some days I actually don’t feel tired at all. Other days I feel like going back to bed at 9am.

This blog isn’t for sympathy. I guess it’s for a normal perspective for people who want to read it. It’s also my way of processing and dealing with the challenges, and maybe just showing the world that parenting isn’t this beautiful bubble the is painted in the media.

This morning on Good Morning Britain, there was a wonderful slot showing the reality of normal parenting (watch here) and my friend Laura reminded me that life as a parent can be a juggling act, and I only have to juggle 2 children!