Humbling set backs and cautious planning for the future

Sarah-Hope was knocked flat again at the end of June. We assumed her gut had flared up as every time she has been so flat diarrhea has followed. Thankfully it was only the Adeno virus and even though she spent three days (not nights) in hospital receiving IV fluids to give her gut a break, she went back on the infant formula Neocate for nutritional support and slowly regained strength. It was interesting being back in hospital with a 3.5 year old. For the first time, Sarah-Hope said ‘I have a sore tummy’. Last December she would just ask to be picked up but this time she could talk more about what was happening with her which was great.

But it still took two months to recover. One month for her to stand up, and another before she would voluntarily walk during play. Knowing more of what to expect, it wasn’t as difficult as before, but these periods of ill health are so humbling. How I love to plan my future – but when health is fragile, the fulfilment experienced through executing my plans for my life is a luxury I don’t presume upon.

However, a couple of months later the gastroenterologist followed up with us. Since Sarah-Hope was experiencing significant periods of health inbetween her episodes, he felt less inclined to say that she had a chronic illness. I am encouraged by that assessment at this point of time. But I don’t think I will believe it entirely for a while! As the paediatrician said to me a year ago, sometimes only time provides the answer. But suspicions aside, I do have much to be grateful for! When I think of how overwhelmed I was a year ago, I really do need to acknowledge the kindness and mercy of God in Sarah-Hope’s current health.

The reality of a healthy child for the last few months, though, has meant that I no longer am waiting for her to get sick again. I actually expect her to be healthy – amazing! And so for the first time we are considering signing the girls up for a couple of days of preschool per week in 2016. It feels like a good next step. I adore spending time with the girls but I feel that their regular exposure to older, more independent kids would provide some good stimulation for them which I can’t provide.

Sarah-Hope, now four years old, has been accepted and cherished in our home. An interesting journey is now beginning – how to help her adapt so that she can be included and contribute to the community in line with her potential. This will require some real thought – because we have not actively adapted the home environment to promote independence yet. But it's coming.

Tears of frustration and joy

From frustration to acceptance

Currently, Sarah-Hope is in good health. I think that health means more to me than answers! That period of bad health was a blur. Sarah-Hope’s behaviour was so challenging – but it was difficult to know whether she was being totally defiant, or if she was just unwell, or if her frustrations were typical of a three year old girl– especially one who is making sense of the fact that she has little arms. “I CAN’T REACH!”, she would shout. “IT’S EASY FOR YOU!” But a couple of months on she seems to be in a space of acceptance. I asked her to close the door (I meant for her to push it closed), but she calmly said “no, I have little hands”. And so we asked Libby to do it and there was no fuss at all. “Please pass this to me, Mum”. She has also told Rich that when she is older her arms are going to grow and her hands will be able to touch each other. That made Rich nearly cry.

Tears of joy

For the first time, I feel as if I am seeing some fruit of our parenting labours. Sarah-Hope is better at saying thank you and please and in a decent tone too. This has been really important for me – because she won’t be able to do everything for herself, Sarah-Hope must learn to make valid requests with proper respect to get things done through and with other people. Her physio reminds us that the ultimate goal is collaborative partnership – not independence. So I am delighted that her manners are improving – admittedly I benefit the most from this!

Sarah-Hope is singing! For the second part of 2014 she was going to a music class which she enjoyed but never showed any signs of participation despite being slightly older than the other kids in the class. And then in January this year, she suddenly started putting on her own little music classes for her dolls and animals! She switched on her little toy computer, played a song, shook a rattle, and lined up all her stuffed friends to join in the fun. To hear a child laugh, play and sing is a beautiful thing. So songs and rhymes are becoming firm favourites as well as these special music making times.

Sarah-Hope’s imaginary play is stunning. In many ways it is a relief – she is far less frustrated than when she is playing with physical toys which she may struggle to manage depending on their weight and shape. Here she is free to pick up and hold her babies, pets and friends… and so this may result in her having greater imaginary play than she might have with a full working body... What a great outcome! Sarah-Hope loves her little cousin, Jessica Rose Whyte.

This year Sarah-Hope has also taken on some water physio classes. She is always slow to get into the water. She loves the feeling of being splashed on her back but I think that since she can’t wipe water off her eyes and most of her face she finds her defencelessness rather threatening. We have gone from taking most of the session to get into the pool but are making progress. The idea that she gets to have toys in the pool is very exciting to her. We would love her to learn to swim at some point but are just working on her relationship with water for now, keen to build a solid foundation of love for the water.

Health challenges and new perspectives

Another week in hospital

The last blog post was almost five months ago in October, with a beautiful picture of Sarah-Hope looking healthy and happy. A lot has happened since then.  We went away for a weekend with some friends mid-November and Sarah-Hope was very clingy. I assumed it was the big crowd and was a little put out at having to host while holding a child all weekend long but we had fun anyway. By Monday morning she was totally pap. I wondered what virus was knocking her but nothing was obviously wrong when the doctor examined her the next day. Later, diarrhea started and continued in bizarre form.She seemed to be up and down and ten days later we put her back on steroids and Neocate formula. I slowed the feeding right down and fed her 50ml of milk or Ceralyte every hour or so but it was agonising as we could put it in but it just came out. By the end of the weekend I knew she was really dehydrated despite us trying to manage her fluid and milk intake via the stomach tube and I got all our things ready as I knew she needed to be admitted to hospital. Despite now getting IV steroids she was still pap for another four days (her third birthday included). She underwent a number of tests with no bugs / viruses / allergies coming up. This led the paediatrician to consider whether the diarrhea wasn’t rather triggered by something related to the immune system, perhaps an autoimmune condition such as Crohn’s disease. Her faecal calprotectin levels were ‘impressively high’ (>600, when <50 is the norm) meaning that her gut was significantly inflamed. Sarah-Hope was started on a formula called Modulen IBD (which is for Crohn’s disease) which is used to treat inflammation in the bowel. It seemed like quite a risk at the time but if it didn’t work she was going to have to have total gut rest with IV feeding as she was showing no signs of improvement. Thankfully the Modulen worked and we were able to leave hospital three days later. She had bounced back, her appetite increasing and behaviour typically difficult after having steroids pumped into her. The feeding was very time consuming (having to feed her 10ml of milk every 10 minutes!) but we were so exhausted from that week in hospital that we were keen to get home no matter what we needed to do! Sarah-Hope was also desperate to get out of hospital and the day we got out instructed us to take her out to the park, to her Oupa’s house, into the swimming pool… she was on a rampage and ready to recover! Two days later we had a belated birthday party for her and she seemed in good form.

Two months to recover

We were grateful that the Modulen trial seemed to be working, but that came with a whole lot of other concerns. Before, whenever Sarah-Hope had been sick we would lock down for a little while and then re-emerge ready to get on with our lives. But what did it mean if you had an autoimmune condition? Something which could flare up at any time? What are one’s expectations of health in that situation? Can you actually make plans for your life if your health is this fragile? Although the formula for Crohn’s disease was working for her, did this mean that she actually had Crohn’s disease - and if she did what did this mean for her and us as a family? Not knowing exactly what was causing her gut issues was quite unempowering.

As Sarah-Hope settled back home, feeding got more and more difficult. She was now off steroids but very emotional. She would shout at me, “I DON’T WANT FOOD!” Mealtimes were really tricky. I used to prepare meals ahead of time but I just had to be available to find out what she wanted and cook it for her in that moment. The choices she made were generally starchy and plain, what you might expect someone with a sore tummy to choose to eat. One day it would be a kilogram of marrows, the next day pumpkin, the next day five bowls of oats, the next day pasta. I took her into the shops and asked her what she wanted (unheard of in our family!) and then just hoped that she would remember her options.

Libby followed suit. She demanded to stay in her pyjamas. She said she didn’t want to eat. She also wanted to be held and carried everywhere. In the next two months I took her to the doctor twice to get her checked out as she was also being very demanding but apart from some iron replacement meds it just seemed to be attention seeking. It startled me how affected she was by Sarah-Hope’s health and behaviour now that she was 22 months old (she was 14 months old when Sarah-Hope spent three weeks in hospital earlier in the year but she seemed far less aware of what was going on then).

We went on holiday late. We came home early. It was far too stressful dealing with this in a group setting and disturbing everyone else’s peace. There were maybe a handful of moments where the kids relaxed and played. It got slightly better such that we braved having one parent on two children and letting the other get some rest or fun time. But it didn’t seem worth using leave for a time when the kids were such hard work! We hoped that by Easter we could have a holiday and they would be well enough so that we could all have some rest!

Because it took so long for Sarah-Hope’s gut to recover, it was difficult to know whether she was getting better or not. She did have a scope (on Libby’s birthday) but that didn’t come back with too many answers. A gastroenterologist looked at the results along with other reports and has suggested further testing that could be done should her gut flare up again. I think most of these tests are for rare immune system related causes of diarrhea. On the positive side, the gastroenterologist didn’t think that Sarah-Hope had Crohn’s disease based on the info at the time but said she could be given the generalised diagnosis of inflammatory bowel disease.

As her gut has improved, we have slowly weaned her off modulen. This is now the first time that she isn’t getting milk formula through her stomach tube. It is amazing to see how much she is eating now that she isn’t getting any milk! Her appetite and energy are unrecognisable. I wouldn’t have known any different last year, and she wouldn’t have been able to describe it for me (which is why the emotions and tantrums re food were so difficult)… but seeing Sarah-Hope just suddenly decide that she wants to crawl (yes, crawl!!) and walk up the stairs by herself multiple times in the day is incredible – the energy but also the independent moves! What a relief. I was feeling so tied down with carrying and lifting two girls all day long but can see that this will change slowly. Sarah-Hope is now into climbing… in the car, onto the couch… she wants to do it all. It means as she’s doing more herself I am able to do less for her (and some other things for her instead)… hooray! This coupled with Libby turning two, and the communication between the little sisters radically improving… they are talking to each other and playing, laughing, arguing etc… I am no longer the only centre… they relate and that has released me slightly.

Parental tears and perspective

I have no hesitation saying that the three months with Sarah-Hope’s inflamed gut were the most difficult months I’ve experienced as a mother. As the paediatrician was putting in Sarah-Hope’s drip, she was shouting and crying “Take it out, I don’t want it, Doctor Paul, I don’t want it!” If I had had the space to have a tantrum about inflammatory bowel disease (IBD), I can assure you I would have screamed “I DON’T WANT THIS!” and run a mile! I have found it interesting comparing the more recent process of diagnosis of IBD to three years ago when Sarah-Hope’s underlying condition of TAR syndrome was diagnosed after birth. Back then, what seemed really important was acceptance – accepting that even though all the odds were stacked against her, God had clearly given Sarah-Hope life. Even if she was differently abled, we were to accept her as He accepts us. Because of the dramatic circumstances around her birth, it was so clear to us that God had ordained for her to live and we were confident that He had a purpose for her life, which it was a privilege to be a part of. But, I have found accepting Sarah-Hope’s diagnosis of IBD far more difficult. You can be differently abled and full of life – but IBD robs you of life. It is described as being lifelong, debilitating and painful. And the effects of it are challenging socially, which robs us of our very support systems and the joy we find in our relationships. It feels like a spiritual battle. And I have to remind myself of how I was tempted to feel intimidated about all the possible outcomes while pregnant with Sarah-Hope – yet we mercifully escaped many of the potential scenarios, some we faced for a short while and overcame by God’s grace, and others we have grown into living with. And so while I shouldn’t be in denial about the realities of Sarah-Hope facing chronic illness, I shouldn’t presume what that will look like either. I have been gaining greater eternal perspective – appreciating the reality that as Christians the goal of this life is not one of comfort, but of training and preparation for the next. We really shouldn’t be surprised when we face difficult times (or presume that we’ve been through enough and so we are immune from further challenges!) – but rather joyfully anticipate heaven, where there will be no more tears or suffering. As Rob Parsons quotes, ‘there are other worlds to sing in’. How beautiful is our Hope!

What was really good about those months of IBD is that it really brought me to my end. It was the first time I’ve admitted “this is difficult”.  It made me realise how much I need to lament before God and process my feelings about what is going on. I am a planner and prefer to get on with believing what is true and doing what needs to be done – but I am learning that I need to set apart time to acknowledge and process my emotions. If I don’t, my emotions begin to drive me and I can be tempted to feel overwhelmed or sorry for myself and numerous other undesirable behaviours! I am slowly experiencing a shift from living in a type of survival mode which really relies on my resources to manage my situation to a life of faith in God and His provision for every moment. I have felt the resultant shift to spiritually thriving. My kids needed me so much during those months and were in my arms continually – and that taught me to use every free minute, be present today and be grateful for the smallest things (such as being healthy enough to have the energy to go a park together), to find rest in God and not my circumstances, to know the life and love of Christ as my life is given to others. What a joy it is to live in daily trusting dependence on God... as unnatural as it is!