Light at the end of the tunnel?

I see light ahead! We had a hospital appointment today. Before this appointment there has been weeks of researching, praying and pondering. I've been trying to formulate a plan of what I wanted to achieve at this appointment. As lovely as my GP is she has no clue about what is wrong with my son. A lovely friend of my husbands led me to an online forum for mums of babies who suffer from 'reflux' and I not only received invaluable help from them but I was able to gleam lots of information from their own experiences. I evaluated my baby's history and symptoms and tried to see if any of the information I had found would be fit for him.
I've also been going through my own spiritual journey, and finally came to the realisation (again) that the Lord knows what He is doing.
So, while we drove to my in laws yesterday, my husband and I spoke about what we would take into the appointment with us. We decided we didn't want any medication for baby. All the medication he had been on had made him react badly and also didn't work. If possible, we wanted to see if a dietary regime could improve his symptoms, specifically dairy free, as so many babies appeared to have improved since going dairy free.

When I told the consultant about our history, she examined him and then she said 'it's not reflux'. Needless to say I was shocked and anxious to see where she was going with this. She then went on to say that the reflux was a symptom of an underlying cause. Before i could tell her what i thought about diet she said she suspects that the cause of these symptoms are actually a cows milk protein intolerance (or CMPI). I could have hugged the doctor! Firstly because she had listened and taken into consideration ALL his symptoms and not just the reflux. And secondly because she had confirmed the feelings that I had been having. What a blessing!

Today, we go shopping for a dairy free diet for me. As much as I know I'm going to miss chocolate (which has been my staple intake) I'm quite excited to see if it's going to work. We've got 6 weeks to see if it will make a difference, here's hoping! You never know, it might help me too. I've been on a restricted diet before and it helped, but this time I've got more of an incentive!

Bearing the burden

Sometimes I can hear something I've already heard before and it hits me like new again. I had such an epiphany whilst speaking to my mother yesterday. She had been studying the scriptures when she came across a chapter that she felt she should share with me. This happens whenever I'm struggling, she always finds the perfect story or scripture to help me. After fighting against my trials for a while I've come to the point where I feel ready to listen to what I need to hear and this passage of scripture was just right. It's from the Book of Mormon and at this point some people are in bondage to another group. They pray and this is the response the Lord gives.
And I will also ease the burdens which are put upon your shoulders, that even you cannot feel them upon your backs, even while you are in bondage; and this will I do that ye may stand as witnesses for me hereafter, and that ye may know of a surety that I, the Lord God, do visit my people in their afflictions.
15 And now it came to pass that the burdens which were laid upon Alma and his brethren were made light; yea, the Lord did strengthen them that they could bear up their burdens with ease, and they did submit cheerfully and with patience to all the will of the Lord.
Mosiah 24:14-15

I've been wanting and asking for my burdens to be lifted, but all I've been told so far is to be happy. Whenever I've heard talks or read scriptures and books, I've got the feeling I need to be happy. I just couldn't fathom how I could be happy about working like a Trojan everyday, with everything being such hard work. I could smile and pretend, but how could I be happy? Then when I read this I realised I had to accept that this is my life now and change my life accordingly. I've got to work with it. I once heard that if you don't like what you have to do then make it fun somehow. Anyone with a toddler knows that they love to have fun, so my two year old has been my inspiration. We sing and dance now whilst I pace the floor to get my baby to sleep as one example. My body still aches with pain, I still feel times of nausea but then that's when I'm given respite after doing all I can. I'll be blessed with a nap and rest while the boys sleep, or a friend will come over with dinner prepared or to ease my burden at home. My parents live 5 minutes away, so we often go round they do a lot for me. Not to mention how much my husband does at home! My job is to submit to my burdens cheerfully and I believe as I do so they will be made light.

And so it begins ...

After 11 days of just breast milk we transitioned our little baby back onto solids today. I have to admit, this is a journey that fills me with trepidation. The last time he was weaned he was on omeprazole as well and with each new food his reflux symptoms seemed to be spiralling out of control. I didn't know what the culprit was - the medicine or the food. So we stripped all back and we are starting from the beginning. Meds free! We've not noticed a difference without medication. He's no worse, but he's no better either. Some days are bad, some days are worse. I've kept a diary of his symptoms so I'll hopefully be able to recognise if any foods are causing an increase in his reflux.

I'm dreading weaning again because I have to live with the consequences of what introducing a new food might mean to baby. My body feels like its running on empty on a good day, so I delve into negative energy on bad days. It just so happens that we are starting on such a day. My baby constantly fed and wriggled and squirmed till 2 am, unable to settle. Then once he settled it was the usual 30 mins - 1 hour wake up till morning. I'm not sure what caused this. I can only think it was the mild chili con carne I had for tea as that was the only difference to either of our diets. However, we plod on.

I've began weaning baby this time on Plum 4 grain cereal. The grains include quinoa and amaranth. Both grains I was allowed when following the strict diet for my ME. He ate it well and finished the portion I gave him. 3 hours later I've seen no difference to his symptoms. We'll carry on with this for a few days and gradually increase the number of meals, so that his delicate digestive system isn't over loaded. He got constipated last time and administering a suppository is something neither of us want to repeat in a hurry!

One other thing i need to mention is the miracle of the sling. Why had I not tried this before? A kind friend has let me borrow hers and what a difference it has made these past three days! Carrying baby in a sling has kept him upright (essential for a refluxer), allowed me to have TWO (yes, that's right TWO) hands free, and enabled me to shift the weight bearing from my arms and wrists, to my shoulders and torso. I still need to pace baby to sleep, but it has been easier and a few times he's slept while I've been doing other things! Needless to say, I'm searching eBay now for one of our own.

Reintroduction

First of all I want to say a big thank you to all those who have read my blog thus far. It's been wonderfully comforting to know that other people have taken an interest in my life and are rooting for me. I began writing a blog because I felt prompted to. I thought this was because I could achieve big things with it. I could raise awareness of M.E, I could help other sufferers. As time has gone on I've realised the blog wasn't for anyone else, it was for me. It was an outlet for my feelings, a strategy to cope with the trials that lay ahead and a portal for finding friends that would strengthen, cheer and help me along the way.
This time hasn't ended, but I'm struggling to write a blog that I defined into one category. I used to just have M.E, but now I'm a wife, and a mother and one of my kids has reflux. All these things combined make my life about a lot more than just M.E. So, Thats what I want to write about. My WHOLE life and not just one thing in it.
Let me start over. My name is Jennifer Barber. I'm thirty one years old. I'm married to an extremely understanding and supportive husband. I have a toddler who I'm sure is an angel in cute clothing and I have a baby who is my constant companion 24 hours a day, 7 days a week. I'm sure he was sent to try me, but I love him all the more because of it. I'm a member of The Church of Jesus Christ of Latterday Saints and my faith is what influences every decision I make, what kind of wife I am, how I raise my kids and the reason why I do what I do. This is me, this is my life, and this is my blog. :)

The healing power of a good moan

In contrast to my previous blog posts I want to write about the other way to deal with trials. After speaking to some friends who are going through some hard times it made me realise that sometimes we do just need to have a 'moan'. In our conversations they would say 'I know it's going to end' or 'I know people have it harder'. These statements are true, but it doesn't mean that what we're going through at that time isn't difficult. Most days I get up and decide its going to be a good day that day. Then as time goes on and I find myself unable to accomplish the necessary tasks due to having one available hand, or a screaming baby, I begin to find it difficult. My body gets even more tired and it becomes hard work. On these occasions all I need is a good rant and moan. Get all that anger and negativity out of me and then I can continue. I'm not looking for a solution, I'm not looking for a 'keep your chin up'. I want someone, just for that moment to listen, agree and then I can carry on. I can go back to climbing the mountain, or accomplishing the impossible tasks. I'm not saying its good to moan all the time. However, most people I know are positive people who are desperately trying to 'keep their chin up' during some really difficult times. They struggle along with a smile on their face until they reach boiling point. Then they break and feel bad for doing it. What I say is, it's ok to break. It's good to get it out when you can't take any more. Let the burden off your shoulders so you can keep plodding on.

This time next year we'll be millionaires ..

Like del boy I've found myself living for the future since I became ill and more particularly since having a reflux baby. I don't wish for money, although that would be nice. I find myself thinking of the day I'll be dancing again, running in the park with my boys. And most of all I look forward to the day that I can go on a proper date with my husband. We got together when I was very poorly and then children came along and zapped all my spare energy and our time. So dates are very few and far between.
I've been wondering recently if this way of thinking is healthy. But what do we live for if we don't have a hope for the future. The thought of the weekend gets us through our working week. The warmth of the summer helps us endure the wet and cold of the winter. If you're religious, like me, the promise of an eternal paradise with our friends and family waiting for us after this life sustains us through the hard times.
But we live in the present and if we're to get through it we have to find some enjoyment in it. They are precious moments that provide us with respite that propels us to keep going. They may be only brief, but they're enough. After a hard night of waking up countless times with my baby I awoke to his little hand on my face and a smile so wide greeted me as I opened my eyes. It didn't matter how tired I was, that scrumptious little face cheered me immensely.
Finding joy in the present can be difficult, but from experience, it's so necessary. Unfortunately, the power to have joy is within us. We are usually the ones that have to change to experience it. I say unfortunately because a lot of the time I want my circumstances to change. However, what I need to remember is that I'm fortunate to have the ability to be happy despite my circumstances. So, I'll be hunting daily to find these moments. Being happy is so much nicer than not!

A spiritual new year

I love new year. To me it is a significant passage of time. A fresh start. I try and make resolutions every year and since having M.E my goals have not been physical, but more emotional and spiritual. The last half of 2011 was extremely difficult for me physically and so took its toll on me emotionally. I wanted to set goals to make 2012 a better year, but the things that would make me happy were out of my control. Instead I had to think outside the box and look for things to make me happy that were in my control.
I decided my goal for 2012 was to become more like Jesus Christ. I believe that through getting to know him through the scriptures and emulate His example I will find peace, I will strengthen my relationships with my family and friends and have courage to face my trials.
We've been in 2012 for a week now and whilst I have thought about my goal and tried hard every day, I have failed every day. At least with this goal I can keep trying.

I find my trials difficult to bear at times, but reading these inspired words by our prophet Thomas S Monson, has given me emotional strength to keep trying.
"There will be times when you will be frightened and discouraged. You may feel that you are defeated. The odds of obtaining victory may appear overwhelming. At times you may feel like David trying to fight Goliath. But remember—David did win!... "Have the determination to make the effort, the single-mindedness to work toward a worthy goal, and the courage not only to face the challenges that inevitably come but also to make a second effort, should such be required. Sometimes courage is the little voice at the end of the day that says, “I’ll try again tomorrow.”

I Often wonder how my thoughts and feelings can be described so well by someone else. I do get frightened, I do get discouraged. I also know that there are too many of my friends and family going through their own trials at the moment. So, to all of us I wish that 2012 can be our year. Our trials may not change, but may we have the courage to face them and find peace and happiness.

You gotta have friends

"A friend is one who walks in when others walk out"
-Walter Winchell

I've been thinking about friends a lot recently. When I first became ill and was bed bound (or rather, couch bound) I felt the loss of friendship deeply. When I was well I made the effort, I went out to all the social events, I approached anyone and everyone and was happy with the friends I had. I classed everyone as my friend. It all changed when I was no longer fit enough to make the effort. People had to come to me and so my social life dwindled rapidly. The odd few came to visit and I still think back now at what great friends they were to make that effort for me.
Once I got a bit of energy back and was able to make more of an effort to go out my friends increased again and life was good. I was social again.
Now I'm pretty much housebound. I'm no longer able to make the effort to go out that often. What I value now as much as I did in the beginning are those friends who make the effort when I'm not able to, and to those new friends I've made because they come to help me in my hour of need. It's times like these when true friends show their worth. This is a shout out to them, and a wake up call to me. I hope I can be that kind of friend in someone else's time of need.