Tuesday, 3 December 2013

A teary Tuesday...

This blog post is being written in tears. I didn't want to write it; I didn't want to ruin the cheery christmas posts of the last few days.

But today I feel like I've crash landed totally unexpectedly. I feel out of control. I feel lost. I don't know the answers and I can't see the way out.

In essence, I need your prayers.


Today began like any other, except that the conjunctivitis I had being trying to keep at bay from Heidi had got her. She woke up gloopy eyed, but smiley and cheery. At 8 I called the doctors to get an appointment. Get on the case quick and the whole thing would be over quicker. That was the plan.

And so we sauntered up to the Doctors at 10.45am, totally oblivious to and unprepared for the crash landing that was about to take place.

I popped my head into the chemists... "I need Heidi's medication... There should be a chicken pox vaccine there too, but I'll pick it up Thursday." I was feeling relieved. The vaccine, that we have waited so long for was finally due this week. Chicken Pox poses a major threat to Heidi on the meds she is on. The last few months have been a waiting and avoiding game. Steering clear of any mention of the dreaded pox. It would be a relief to have that constant nagging fear gone.

And then the Pharmacist dropped the bombshell.

"The manufacturers out of it, I'm afraid. No one will be able to order it. They haven't released a day for its next availability... it could be weeks, it could be months"

For someone for whom days have seemed precious, weeks and months seemed impossible. I nearly broke down right there and then in the middle of the pharmacy. Pulling myself together, I sat down in the waiting room. This was ridiculous. We weren't in some third world country where vaccinations are hard to come by. We were in Britain. And my little girl needed a vaccine they had promised me for months. They surely couldn't have run out?! There must be some mistake.

Quickly it has become evident this is no mistake. When you have it reconfirmed by the big London hospitals, you realise that this is it.

There is no jab for our baby girl.

Tonight we were given a ray of hope. A local pharmacy thins they may have it... They will confirm in the morning. I have spent this evening running the events over and over, scouring the Internet for information as to where I might be able to get hold of it.

And then I made the fatal error of reading the patient information leaflet.

Vaccine recipients should avoid products that contain aspirin (salicylates) for 6 weeks after vaccination with VARIVAX as this may cause a serious condition called Reye’s syndrome which can affect all your body organs. 

So what do I do? Heidi is on daily aspirin, and she cannot come off it! Do I live with the daily fear of chicken pox? Or do I protect her from that by getting her the vaccine, but in doing so potentially put her at risk of the very thing we are trying to avoid?

How do I make that call?

Neither of those things is a solution. Neither of those things gives me what I really want.

Neither of those make my baby girl safe.

And then I remember my third option. Trust. To trust the God who so completely held us in those awful May days, to trust the God who brings peace to my heart when I feel like this battle is just too hard. To trust that all of this is in hs hands.

Please pray we will trust.


  1. Oh sweet my heart is breaking as I read this. You are all very much in my prayers and I send much love and hugs xxx

  2. So sorry - praying for wisdom, protection & provision - that God will make a way where there seems no way xx

  3. So sorry to hear this Claire, I suggest asking advise from Ava's consultant at the Brompton re what you have read about the vaccine and salicylates. There is also a medicine that can be given for chicken pox called aciclovir . I don't have a children 's BNF to hand but it might be worth asking if this is a possibility with her other meds , to have on stand by, if she did develop it. We will pray x

  4. I'm so sorry to read about this, Clare. You, Heidi and your family have been through so much this just doesn't seem fair. I really, really hope a solution comes up soon. I know you have so many family and friends around you but I will also be thinking of you xxx

  5. Dear Claire,
    You do not know me, but may know of me…I am Tina Nash's older sister. As a young person I attended church at Parbury Rise, and remember your mum and dad amongst others with great affection.
    I have two children the youngest born with a rare genetic syndrome which has tested us beyond our own strength…
    For the first five years his life was in the balance many times, I identify with the surprise crash landing you experienced today, and I remember the fear such experiences bring.
    The great encouragement is that at 15 years of age now, our son's health is very good and whilst we have other things to sort out for his future we have lost that constant pressure of living with a fragile life.
    My most eloquent and heart felt prayer during our crash landings was "Lord help us" or "Lord Help me."
    I had no other words, but that's OK - Romans 8:26 says
    In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans.
    I want to tell you well done! You are doing just great :-) Even though you might feel a bit unraveled, you have the strength of Christ in you, the Holy Spirit interceding on your behalf and a Heavenly Father who knows you and loves you (and all of your family). You have the 'A team' :-)
    Can I practically suggest that you speak to a friendly medic (Our community Paediatrician was brilliant) and get a true perspective from them as to the risks involved. My experience is that the risks are often minuscule, which doesn't make it a 'no-brainer,' but does make decisions easier. Our son took a medication for 3 months during his first year of life which was eventually banned for paediatric use but it probably saved his life - it was an 'on balance' decision. We, with the medical professionals did our bit and God did the rest.
    So please know in a little corner of Sandhurst there is a another Mum praying 'Lord help Heidi and Lord help Claire' and who knows from experience that God will do the rest x

  6. Might I suggest that it was not a "fatal error" that you read the small print. Perhaps if the vaccine had been available and your doctor had prescribed it without knowing this detail you would be launching ahead towards Thursday without know this important information, and that could have been the "fatal error". God is in control even when you feel that you are not. I pray that you will trust more and worry less.

  7. Might I suggest that it was not a "fatal error" that you read the small print. Perhaps if the vaccine had been available and your doctor had prescribed it without knowing this detail you would be launching ahead towards Thursday without know this important information, and that could have been the "fatal error". God is in control even when you feel that you are not. I pray that you will trust more and worry less.

  8. Hi claire, i can totally undstand your situation. When william was six months old we had to treat his infantile spasms with a very high dose course of steroids. This had the effect of knocking out his immune system, so for a few months we were in a similar predicament and i was told chicken pox could be fatal for him. Of course every child we knew took that few months to catch or come into contact with chicken pox we were stuck in the house most of that time. On one occasion he came into contact with shingles so william was treated with a couse of precautionary aciclovir as another friend mentioned so maybe worth seeing if thats an option if you are ever concerned. It is a horrible situation to be in though constantly worrying who might have it etc. In terms of the side effects, in my experience doctors know what theyre on about and will have already weighed up the risks, fully aware of the potential side effects but you should definitely talk it through with them. We once put william on an anti convulsant thats main side effect was loss of peripheral vision. In that instance we went with it as hes pretty much blind anyway and getting seizure control was our priority. However we are now looking at weaning off one of his main meds which hes been on since two weeks old as the long term side effects are bad. Theres always a balance with these things but as i said the doctors who told you to the vaccine should be well aware and able to offer some reassurance xx

  9. Praying from the United States. Trust God. He is in control!!!

  10. Praying from the United States. Trust God!!! He is in control. He loves your child more than you can imagine.

  11. My thoughts and prayers are with you. I hope you found the vaccine and consulted your doctor about that warning. It does sound very ominous, but sometimes they are overly cautious when they are writing these pamphlets.


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