Book Review: Belinda and reflections on Pain

So how do you deal with your pain? Emotional pain. This is a question that I have been pondering for a while. Do you admit to yourself that you are in pain? If you do acknowledge it, should you share it with others? And who should these others be?

I've just finished reading a story of Belinda and how she survived a horrific car accident. She fought for her life, and then fought for her body to work again whilst grappling with the many losses that her disability brought her. I have met Belinda a couple of times - in fact Iblogged about her a few years ago. I don't know her well, but I was interested to understand more about her journey .

On the cover of Belinda's book is a picture of broken egg, which comes from the quote: "You cannot go back and unscramble eggs. There is no way to undo what has been done. Let’s move out of our past failures, and starting with our scrambled eggs, learn how to make soufflé!" by Barbara Johnson

Her book is really a diary that she kept over the 10 years following her accident, and she shares her triumphs and her frustrations. In some ways it was hard to read, as I was overwhelmed by the multitude of challenges that she faced and her progress was slow - requiring grit and determination. She also shared honestly about her emotional pain and loneliness. Also hard to read. Oh how we prefer the successes, the joys, the feel-good bubbles that make stories attractive. To be with someone in their time of aching is difficult - part of me wants to run from people's sorrows. Yet it is in that place of struggle that so much is learnt. And through her writing, it was when she took me into those dark places that I gained the most.

I’ve not been shy to share my difficulties on this blog and with others in my social circle. Explaining our challenges is one thing, but I don’t give myself much space or time to dwell on the pain associated with the difficulties. My attitude to life is to recognise the difficulty and then I move straight on to seeking a strategy in order to overcome it, and if that not possible find a way to manage life with it.

In the last couple of months I have found a tugging from my inner being to give myself permission to feel sad about the difficulties. My inner being obviously thought this would be healthy and appropriate, much to the reluctance of my more conscious self. The reality is that I am fearful that if I let myself feel the ache and sorrow then it will just be downward spiral into depression.

Yet I have come to see that by not giving myself space to “feel the pain”, I end up unexpectedly imploding. By imploding I mean seriously over-reacting to a situation, being assaulted by intense negative feelings and experiencing a desperate yearning to run away from my life.

But where is a wise and safe space to share this pain, and the reason for the pain. Is it fair to Matt that I share with the world all the ways he frustrates me? I am unsure if sharing this with the blogging world would be dishonouring to Matt. Yet by not sharing the hard things, then my blog ends up looking like life is easy and Matt is just sailing through. Yes there are joys and triumphs, but there are also tough, heart-aching times. 

In Belinda’s book she was very real about her pain. Maybe one can be in a book, where the reader sees the pain in the context of the whole story. Blogging is different because people can just dip in and out – and can completely miss the big picture. Hmm not sure yet.

But I do know that this year I am going to be a lot more honest with myself about acknowledging the soreness of our challenges. I will seek courage to verbalise this to close family and friends. And not just fast track to finding a solution or coping strategy.

Don't look up

I am just emerging from a dark couple of weeks. I shared in the previous blog post how emotionally draining I found the first few weeks of Matt's schooling to be. In addition to highlighting Matt's delays, it also highlighted how far we still need to go in terms of Matt's development - social maturity, fine motor skills - especially using his hands and fingers, communication, and much more. I think last year - when Matt was in a settled, safe space both here at home and in his play group - it was much easier to focus on the achievements and progress. Last year there were lots of celebrations in our home as Matt's speech slowly but consistently bubbled forth, and as he revealed his growing understanding of the world around him.

This new school environment - though very warm and embracing of Matt - has highlighted the "what still needs to be achieved" steps. A helpful metaphor...it feels like I have been climbing a big mountain for the last 5 years and I finally reached the top - as I stand at the top, ready to raise my arms in victory I happen to look up. Instead of seeing open skies, I see another mountain, a bigger mountain, a more treacherous looking mountain. And as I look down towards the path I have just finished climbing all these years, I don't see much of mountain, rather a small hill. My victory-arms fall to my sides, I exhale as the energy of what was supposed to be a great conquering moment feels more like an anticlimax. I don't feel like I have the capacity to keep climbing and despair sets in.

Fortunately in that place of dejection, my prayers for help were heard. I felt God whisper to my spirit that I should not stand alone, but rather reach out to others who are also climbing the mountain. And so two tearful emails were sent across cyberspace and great ocean divides to two inspiring women and mothers of precious RTS children. That act of reaching out, choosing not to stay isolated, allowed hope to be reborn in my heart. Their loving and wise responses added a greater measure of hope and reawakened my tenacity. With a heart now open to receive - God brought in other people across my path, most of them unknowingly, to speak words of encouragement to me.

Yes there is a giant mountain that needs to be climbed - it will only be conquered over years. But the vastness of this challenge no longer fills my vision. I have heeded good advice to rather focus my eyes on the immediate goals and the current joys. So Matt and I will picnic on this hill top, we will throw a ball, roll in the grass, and eat a snack - and then once again pick up our journey of walking up a mountain. Already I can see God placing some fellow climbers alongside us for the next part of the trip. I know I will be able to keep going.

Vulnerable

I find that I am haunted by a mental image.

The picture is of Matt during his end of year concert at school. For the last song all the kiddies stood on their chairs. Matt stood there proudly. After their cute rendition of "We wish you a merry Christmas" the kids jumped down off their chairs and exited the "stage" to go inside to get treats. The teacher led the kids indoors. Matt, however, could not get down from his chair. He is not always that confident with climbing, and certainly not when his arm is in a heavy cast. So there he stood. Alone. All the other kids able to get down and head inside. Matt didn't look too upset really, I imagine he was thinking that since he knew he couldn't get down, he would just wait until someone could help him down. Fortunately I was standing on the side of the "stage" area and could quickly move in to offer him a hand to descend from the chair.

I know that this is not a catastrophic event. I have no hard feelings towards the teacher - she can't be in more than one place at a time. I know cares for Matt and makes space for him in wonderful ways - he has really blossomed in the play group. I also recognise that I was there for Matt when he needed help and so he did not experience any frustration. I also know that this situation emerged, not necessarily because he has a syndrome, but because he had a broken arm.

Yet most nights (usually when I am up feeding Nic, and all is quiet and my thoughts can roam without distraction) I am confronted with this image of Matt standing alone on that chair. It haunts me. I realise that I fear the vulnerability that he might face in the future. Vulnerable, because in this world, in this society there might not be space for him to function independently. Vulnerable, because he will need to depend on others. Vulnerable to loneliness and aloneness.

I am still trying to figure out how to respond to this. Do I plunge myself into unceasing effort to help him to become independent; or do I just embrace his vulnerability, make peace with it; and trust and pray that there will always be some goodwilled, gentle and loving person around in Matt's life on whom he can depend?

I am not sure if I should post this, but since I find release in writing, I type. I also remind myself that this blog is, after all, not just about the victories that we experience, but also the struggles we face. So I share these feelings as a commitment to being authentic about our journey with RTS.

Reflecting back - our pregnancy

I haven't written much about our pregnancy journey in the last few months. Each day required a an intentional and conscious holding onto God's gift of peace and refusing to let fear to root itself in my heart. The threat of losing our second twin was constantly looming in the background. Reflecting and writing about the process was just too taxing. Every day, from the day our one twin died at 19 weeks until we reached 30 weeks, Lloyd and I lit a candle to thank God for keeping our other baba safe, and we asked for just one more day. That is how we lived - day by day.

Weeks passed and the threat of prematurity diminished. We celebrated that our baby remained safe in my womb. Yet our peace was still threatened - a different fear: that this baba may be born with abnormalities. I felt guilty having this fear, as I felt like I was betraying Matt in some way. I love Matt and who he is, I don't despise the fact that he has a syndrome. Yet I was not sure I could manage a second kid with a syndrome.

We had decided not to have any genetic screening tests or scans during the pregnancy. It is very seldom that these tests give a definitive diagnosis, mostly one walks away with a probability or statistic. We couldn't face living with such an uncertainty again. It was torturous during our pregnancy with Matt. So we chose to wait until the baby was born and then if something was wrong, we could deal with it as a definite. However this did mean we had no idea what was in store for us when baba was born.

Lloyd was studying for his neonatal subspeciality exams in August. The text book from which he studied was called "The Diseases of the Newborn" - over a thousand pages of all the things that can go wrong with new borns. Not an easy topic to study when your wife is in her third trimester.

We did not always manage to live in that place of peace every moment and every day. There were times when the fear would almost choke the breath out of my lungs. There were, however moments, by God's grace where despite the possible threats to the safety and health of our baba, we still experienced joy and delight of life.

Do not be anxious about anything, but in everything, by prayer and petition with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4: 6-7

Do not fear

It has been 4 weeks since my last blog entry. I ended that post by sharing how I was planning to grieve the loss of our tiny girl. To be honest I don't think I got very far down the road of mourning. Not because I am still in denial or shock, but rather because it felt wrong to let go and grieve when there is still another little one alive. And it also became clear that the life of this little one was also at risk. Going into labour before 26 weeks would result in death for this little one.

So I have been focussing on the life that is there; and learning how to overcome the stomach-turning fearful thoughts that seem accompany this part of the journey.

In the week following my last post I would wake up every morning wondering if today was going to be the day I was going to lose the 2nd child. Every twinge of pain in my belly - no matter how small - brought panic thinking that I was starting to go into premature labour. Everytime I would think about the fact that we had to get through at least 7 weeks until we reached the "safe zone" of being 26 weeks pregnant, my chest would close up so tightly I could barely breath in - it was like my rib cage would shrink crushing the air from my lungs.

I knew that life like this was not sustainable - and I was also puzzled by the fact that God had repeated (rather abundantly) the phrase "Do Not Fear" in many circumstances throughout the bible. How could God be serious about this, surely there should be some expections to this invitation to live without fear. However it seems that there is no circumstance or situation wher it is acceptable to succoumb to fear. Desparate not to remain in the anxious vice grip I was in, I started to seek, read, pray about this fear-less living.

I saw that God was not telling us "Do not fear" because He would always remove that thing that caused us to fear, but rather the thing that I fear is not worth fearing. In the light of eternity the thing that I fear is really insignificant. I remember reading (I think it was C S Lewis) that our life here on earth is like the title page of a book, and after we die then eternity is the rest of the pages of the story. Not that God trivialises the things we fear or the things we long for. He loves us and understands our hearts cry. However we give such power to things that we fear - things that do not have eternal value. Power over us to rob us of the life that God wants us to live today.

Lloyd and I have been lighting a candle at the end of each day - thanking God for the day that has passed, that our baby is still safe - and praying for the next day, asking God for His protection. And so I have been living one day at a time; whilst also seeing my life from an eternal perspective - both view points have brought peace to my heart.

More freeing for me has been the revelation that God calls me not to fear because, regardless of what happens, He will be there with me - He will be the shepherd who walks alongside me in the valley of the shadow death, He will be there in the fire, when the waters rise up, and when the storm hits. He is Immanuel - God with us. God with me. And so I will not be alone facing that event that I dread should it occur. So it is not worth fearing and giving up my peace today because of what might happen tomorrow.

I do not underestimate the inpact of the many prayers that have been poured out for us - how they have bouyed us up over the rough seas, and have brought us into God's calming presence. I cannot express my gratitude to the many who have been emailing, texting, phoning, visiting with one message - that they are standing with us in prayer. I know that the freedom I have from fear is also due to these prayers.

Therefore, I have been able to live LIFE in this precarious season. I have been able to be present with Matt and enjoy him. I have been able to sleep peacefully at night and not wake with dread each morning. I have been able to taste my food. I have been able to be creative in the kitchen and garden. I have been able to engage with others, not shutting down or withdrawing. I have been able to live.

We are now at 24 weeks...we keep taking it one day at a time - one lit candle at the end of each day.

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you. I will uphold you with my righteous hand. For I am the Lord your God who takes hold of your right hand and says to you "Do not fear, I will help you"

Isaiah 41: 10, 13

Saying goodbye

Today we went back to the gynae. I explained that I needed to check to see if my baby was really dead, that I couldn't believe it to be real. I also wanted to know if it was a boy or a girl.

The scan showed me a little girl lying very still in my womb, the heart was still quiet, and clearly her spirit was safely with Jesus. I can't explain the peace that descended on me. On Sunday Lloyd and I had been in a dedication service for 2 kids - there they had read the story of when Jesus rebuked the disciples for shooing the children away. The words about how Jesus drew the children to himeself, embracing them, came to my mind in the scanning room. I knew my little girl was with the One who is Love.

I didn't feel angry about the loss, just disappointed - because I won't get to meet this little one face to face, and to share the life that she might have had. I also felt sad for the other baby who will not know his or her sister.

Our other baby has grown since the scan on Thursday and is a bundle of life and energy and movement.

The threat of premature labour looms like a dark shadow over the life that is in my womb. We would love your prayers for this baby to be able to stay in for as long as possible.

In the midst of everything I am deeply thankful for Lloyd and for all those who have prayed for our marriage during this tough season. We are walking very closely. I must say that I don't think I have every been more in love with Lloyd. He has risen up as a man of tender courage and gentle strength, allowing me to process things differently from him and yet never making me feel foolish. He has been processing his own pain and has kept me close to his heart without withdrawing - sharing his journey with words and tears. He has shown love and tenderness to Matt despite the grief in his heart.

I am also deeply thankful that during this time I have felt God's love in a tangible way. On Thursday night, after we received the news, a whole bunch of our friends came around in the evening to pray with us. The love and care in that room was so deep and rich. On Friday I received a message from a distant friend, who is living in Hawaii and who would have had no knowledge of our loss. She felt God remind her to pray for me on that Thursday, and that God wanted to affirm my mother's heart for me children. I was so comforted by the knowledge that God had spoken to her about me on that very day of my loss.

So now I start the grieving process...of saying goodbye to our tiny precious girl.

And also the journey of readjusting my plans...for the nursery, for the pram, for the car, for our lives...

and the journey of allowing new plans to form.

The day I walked into a wall...

On Thursday we went for a routine check up on our twins. We are in that safe zone, between the threat of miscarriage in the 1st trimester and the scare of prem labour in the 3rd. So we were not expecting anything sinister. As our gynae scanned my belly it became clear that she was concerned about baby A (as she calls them). She couldn't find a heart beat and the baby did not seem to be moving. She referred us to the Foetal Assessment Unit just up the road, there they have a sophisticated scan that could show what was going on. A long walk up a short road, hoping and praying that it was just our gynae's small machine that couldn't pick up the details.

In the small, dark room of the Foetal Assessment Unit the ultra-sonographer shook her head. No heart beat. With pity in her eyes she informed me that the "foetus had demised" - yes those were the cold, clinical words that she used.

That was the moment I walked head first into the wall. And it hurt.

I had not seen it coming. I had looked forward to the check up - to say hi to my 2 munchkins. The wall would not be moved and I walked into it. Pain throbbed throughout my body. She measured some more, and also checked over Baby B to make sure there were no further concerns. My mind was numb. I was told that since Baby A was the same size as Baby B the heart must have stopped beating only in the last couple of days.

The ultra-sonographer had squeezed us into her busy schedule so couldn't spend much time with us. Too soon she was ushering us out of the room. I had to will my legs to move to take me out of the dark room. The light seemed to bright for me, too happy, too full of life. I wanted to stay in that small, dark space for a while longer. I didn't want to face the world. I could relate to the darkness - it made sense. The light didn't make sense.

Back in our gynae's office I couldn't grasp what I had been told. My body felt no different. There was no bleeding , there were no cramps in my womb. No physical sign of the death that was allegedly inside my womb. Surely, surely the ultra sound was wrong. How could it be that the baby's heart just stopped beating. It did not make sense, in fact it still doesn't. This whole weekend I have been struggling to understand it all...it is like my brain doesn't work. It is like I am grasping at smoke or a cloud, I can't take hold of it. I just can't let go of Baby A. It's like I can't even start grieving because in my heart I don't believe this Baby could be dead.

My heart is so confused that I can't even think about the Baby B - apparently now there is a threat of me going into labour in the next 6 weeks. It is just too much for me to contemplate.

The one joy in all of this has been our precious Matt. He has certainly been aware that something is not right with his mom and dad. On Thursday he started showing many more of his sensory stimulating movements, like head shaking and seemed to go a bit wild. We were a bit concerned how to cope with him and the whirlwhind of emotions. Yet today he surprised us over and over, he was calm and caring. His interactions with us were so therapeutic and he truly brought joy into our home. I thank God for Matt and the light he brings into our lives.

And I look to God to carry us through this storm.

We have been through a season of processing MANY emotions - last month we had a miscarriage when we were 10 weeks pregnant. We have worked through a lot of our feelings and are in a better place, and thus ready to share our experience.

Here is a poem I wrote as I reflected on it all:

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My little child
I never saw your face
I never felt your physical touch
But through your presence in my life
...through your little heart beating in my belly
You taught me so much
in the little time you were with me

You showed me where I have wounds
Places of pain that I have kept hidden
You helped me to bring them into the light
And to find healing

You showed me where I have dreams
Where I have hope
To have another child
To mother a little person

You showed me where I have fears
Uncertainty about my future
And how I will cope
And how Matt will cope

You showed me where I was holding on too tight
Where I was gripping with fierce control
To things that I cannot hold
Or determine

You inspired me
To face my fears
To choose hope
To choose trust
To release control
To let go and breathe
To give myself to my dreams

You showed me, as did Matt
That the only way to live this life
Is in Gratitude

I thank God for you
and for the 10 weeks you were with us
I will never forget you

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We have done some symbolic acts to help us mourn and also to help us celebrate life. The one was to buy a decorative wall-hanging for our garden. It is made of wire and it spells out the word TRUST. This reminds us that we are not in control of our lives, and we choose to TRUST in God. We trust that no matter what happens, He will be with us and He will provide us with what we need to stand.

Trust in the Lord with all your heart

Lean not on your own understanding

In all your ways acknowledge Him

and He will make your paths straight

Proverbs 3: 5-6

My song

Matt has been unwell for about a week now. High temperatures, vomiting and diarrhoea. It looked like he was getting better on Sunday, but on Monday afternoon the fever struck with a vengeance. We started him on antibiotics. Tuesday we saw no improvement – in fact most of the day was spent keeping his temperature down as it would climb high the minute the meds wore off. Today he was diagnosed with tonsillitis. Now we know what we are dealing with and have adjusted his antibiotics appropriately. I am hoping the high temperatures will pass soon.

It has been tough for Matt – he has really been feeling unwell. He has been so droopy and clinging. I can’t explain to him what is happening to him, so on one level I have felt frustrated. But on the other hand, since I cannot rely on words for explaining, I have discovered a very precious way of communicating comfort and reassurance to him – through song. My song. Now I am not a great singer by any stretch of the imagination, yet my simple tunes, though sung in a slightly off key manner, seem to really touch him. On Monday night he woke up with such a high temp that he was shivering so violently that he could hardly move his limbs. Whilst we were waiting for his temperature to come down, I cuddled him on my lap with his head against my chest. I could tell that he was tense and confused about what was happening to him. I started singing and immediately he calmed him and snuggled in closer. He knew that he was safe. I know he felt my love and care for him through my song. Music has many values, but over the past few days I have seen its visible effects on Matt’s body. I have been struck by what an amazing gift music is to us as humans.

I will still hope

This last week has been fairly emotional for me. Nothing specific has happened – no big crisis or anything. But I have been thinking a lot about Matt’s communication. Last week I was looking forward to attending the second level training in Makaton Signing; yet at the same time I was also quite angry about having to go.

I really am thrilled to be finding a way of opening the door of communication to Matt. I love it every time he makes a sign. I love it – with a deep and wild joy!! I love the connection. But another part of me is not ready to accept the fact that Matt might not be verbal. I am such a verbal person. My life makes sense when I talk. My profession is about talking and listening. I build friendship through words – giving them and receiving them. Some people connect with others through touch, or doing something together – I connect through talking. It seems so crazy to me that I should have a child who might not talk.

My husband was wonderfully supportive, allowing me to vent and reminding me about how well Matt is doing. The truth of his words became clear for me on Saturday during the training session. I met a mother of a 5 year old who couldn’t speak; although he understands a lot. He hasn’t learnt to sign or communicate through gestures. He doesn’t even point – but if he wants something he will push his mom towards the thing that he wants. He is quite strong and as he is getting older it is getting harder for his mom to cope. This mother’s strength in such trying circumstances really touched my heart. And it also made me realise how much I truly have to be thankful for. Gratitude really does bring me back to earth again, and plants my feet firmly on the ground.

Yet, although I have accepted many things about Matt’s syndrome, I am still not ready to accept the thought that he might not speak. I still pray that he will. But I won’t let it dominate my life, and I won’t let it rob me from fully enjoying every communication moment with him.

But I will still hope…

Here Matt is signing KISS -he is facing away from Lloyd;

but making the sign in the mirror so Lloyd can see.

Then he turns and does exactly what he signed.

A precious kiss for his dad.

Moses' Mom's Neighbour - Part Four

What do you do if Moses’ Mom’s neighbour happens to be your friend, a member in your church, or indeed your neighbour? How do you provide authentic and meaningful support to her?
We felt it important to also share our thoughts about how we as a Christian community can respond to those who are suffering in our midst. Often people do not know what to do; or they feel awkward and so they stay away or hold back. Based on our experience, this is what we recommend:

Love the person who is going through a tough time.

This might sound like a cliché or an easy answer. But to LOVE someone it means you have to BE 1 Corinthians 13 to the person who is suffering. This takes time and effort and prayer. However by doing so you are being the tangible presence of God to the person.

Share in one another’s suffering.

Paul makes this very clear in two of his letters to the Early Church. He writes to the Hebrews “remember those in prison as if you were their fellow prisoners, and those who are mistreated as if you yourselves were suffering” (Hebrews 13: 3) and he says to the Galatians “Carry each other’s burdens and in this way you will fulfill the law of Christ” (Galatians 6: 2). I find these verses really challenging because they invite us to really get involved in the lives of those who are in pain as though we were in that same pain. Saying nice words or caring from a distance doesn’t match up to God’s standard in terms of loving those who are suffering. This is intimate stuff. The first step to sharing in another’s suffering is taking the time to understand their experience by asking, listening and being with them – and being careful to not jump in too quickly with advice, clichéd prayers or solutions.

Recognize the unique thing God is doing in each person’s life.

Most of us have a standard response to someone who is going through a tough time, usually it is based on our doctrine or belief. Some people believe you should always pray for the miracle and trust God to answer. Other people bring a message that one should accept the circumstances and not hope for a miracle, rather mourn and find the good.
But God doesn’t do the same thing in the same way to each person who is going through a tough time. Instead of assuming what God’s agenda is, ask him about what He is doing in this person’s life and what message it is that He wants you to bring. Let go of the safe standardized responses and rather let God guide to you.

Don’t give up – go the distance.

Sometimes people feel bad that God hasn’t answered the prayers that they prayed for you. Some people have prayed for our Matt to be healed and to be made “normal” and God has not answered. These people took steps of faith and may feel awkward around us because God did not respond in the way that they thought. The worst thing they can do is to shy away from us when we too are feeling disappointed with God. Rather journey with us as we all try to make sense of God’s mysterious ways, rather than leave us alone in our confusion.

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Lloyd and I have both grieved the loss of our dreams and expectations we had for our child's life. We are learning to embrace new dreams and expectations. I don’t doubt there will be moments of pain again in the future, but I think the worst is behind us. Most of my days are filled with gratitude for Matt and delight at watching his beautiful personality emerge. We are finding peace that God didn’t answer our prayers for a miracle to “heal” Matt. We have come to believe that God is not going to change Matt, but rather He is going to use Matt just as he is to help change the world.

We hope and pray that our story and lessons will be an encouragement to you - whether you are walking in the shoes of Moses’ Mom’s neighbour - or if you live next door to her.

Moses' Mom's Neighbour - Part Three

So how do we respond?
In part two we shared about what God has said to us during our time of disappointment. What does all this that God has said mean for us, especially when God does not do the miracle we want, when we face pain and loss? How do we respond in a way that is best for us? I am sure there are a multitude of healthy responses, but here are 3 that we have discovered to be helpful for us on our journey thus far.

Learn how to mourn
In Matthew 5:4 we read: “Blessed are those who mourn for they will be comforted”. Here we see that Jesus is teaching us to choose the path of mourning when we have experienced loss or disappointment. Note please that it is not the fact that we are going through suffering that is a blessing, nor does it automatically result in receiving comfort. Its only when we choose to mourn will we receive comfort. If we choose rather to run away from our pain, to deny it; try to find a short cut around the pain; or pretend the pain isn’t there then there is no promise of comfort. Mourning means facing our pain – and although this feels hard, this is what will bring us comfort and healing.

For me a real turning point was when I started sharing honestly with my friends about our struggles. One of our big hurts was seeing our friends kids develop healthily and normally, when Matt’s development was slow. We were nervous about sharing this pain with them because we didn’t want them to feel like they couldn’t rejoice in their kid’s milestones, or that they had to tiptoe around us. So often when we were socializing we would sit with sore hearts, but pretend like everything was ok and that Matt was normal. It took courage to raise this topic but it has been very healing for us, and our friends have responded so graciously.

Allow God and others to comfort you
We have a choice to suffer on our own or to make ourselves vulnerable by sharing our pain with others. God has made us to be part of a body and he chooses to use people to show His love to us.
I have for many years been an independent person and very capable. For me it was hard to accept help. I am normally the one giving help, not needing it. I have learnt that there is a choice involved in receiving the comfort that people bring, that God brings. We have been blessed by our church leaders coming for supper to hear how we are doing and to pray with us. Sometimes I will get a text message with an encouraging note from a friend. Other times someone will come up to me after church because they felt led to pray with me or share an encouraging verse with me. These have sometimes been so timely, often when I have been feeling low. In those moments I have to choose to receive what is being offered.

I have learnt that in those dark days when I could so easily sit back and think no-one cares, that is actually the moment when I need to reach out for comfort. Even though I feel terribly vulnerable doing so, I am also learning to initiate and ask for support – to phone a friend to say that I am struggling, to ask someone to come around for a chat. Lloyd and I have started inviting people to “prayer parties” where we tell our friends what are needs are and ask them to pray for Matt. These times have been so crucial in our journey towards healing.

Allow God to show you how He can transform your suffering into good.
As mentioned above God has a mysterious way of transforming suffering. We read in Romans 8: 28 “And we know that in all things God works for the good of those who love him.”

Philip Yancey puts it so beautifully (from Where is God when it hurts? P 231) – “How would the world be different if Jesus had come as a Superman figure immune to all pain? What if He had not died, but merely ascended to heaven during his trial before Pilate? By not making himself exempt, but deliberately taking on the worst the world had to offer, He gives us the hope that God can likewise transform the suffering each of us must face. Because of His death and resurrection, we can confidently assume that no trial – illness, divorce, unemployment, bankruptcy, grief – extends beyond the range of His transforming power.”

It means choosing to trust that somehow God can take this terrible disappointment and weave it into a blessing that brings hope and meaning into an otherwise very dark experience. Somedays this has been the only reason I have gotten up in the morning – especially in the first 6 months of Matt's life when I was feeding Matt every 3 hours - but he would take an hour to feed and then I would express milk for the next 20 minutes. This meant I only had 1 hour 40 until his next feed – and this would go on day and night. So I never got to sleep more than 1hour 40 at one stretch. And that was when everything was going smoothly, if Matt would vomit up his feed – which he did on average 2 or 3 times in a 24 hour period it would add another hour of feeding into the day. I was exhausted whilst also trying to work through big words like Mental Retardation, Developmental Delay, Non Verbal, but at the same time try desperately hard not to think about the future fears – what happens if I die? Who will love him? Will he have to live in an institution one day? There was a flicker of hope that I was not alone, and somehow God can make something good come out of this. That is what got me through those dark times.

Certainly now that I have come to a place of acceptance of Matt’s syndrome and I have gotten to know his personality, I am deeply thankful to have him in my life. He is teaching me more about humanity and love than any other individual has, and I trust that God will use him to be a blessing to others also.

In the last part of this series of Moses' Mom's Neighbour, we share some thoughts on how others can provide comfort to someone who is going through a time of disappointment, when God hasn't answered their prayers as they had hoped.

Click here to go to Part 4.

Moses' Mom's Neighbour - Part Two

In Part One we looked at how there are times when God doesn’t respond to our prayers in the way that we want Him to and so we may face illness, death or other tragedy. We asked what does God have to say about this?

What does God have to say?
So what does God have to say to the lady who lived next to Moses’ mom, to all the others in the bible who did not get their miracles, and to us who were disappointed?
Has he abandoned us?
Has he given up on us?
Is he punishing us?
Is He too busy to care??
NO

We have found that God does have something to say to those who are hurting and disappointed. He is not silent. Here are six things that God has said to us during our season of hurt:

1. God says He will be with us in those times of pain
When you pass through the waters, I will be with you; and when you pass through the rivers they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the Lord, your God, the Holy One of Israel, your Saviour.

Isaiah 43: 2-3

Although there were definitely times when we felt like we did not know how to reach out to God, when the disappointment and fear was so powerful, we did always know that He was with us in this somehow. I couldn’t always point to something and say look that is proof that God is here, but something in my spirit, deep inside knew that He was. It was like a little light that kept shining even in the dark, tired days.

2. God says He will comfort us
As a mother comforts her child, so will I comfort you; and you will be comforted over Jerusalem.

Isaiah 66:13

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort.

2 Corinthians 1:3

Again I find it hard to pin down one thing and say this is God’s comfort – it is not always tangible. Sometimes it’s a whisper, hardly there, but at the same time so definitely there. Other times the comfort comes through friend – something they say or do; or through something I read or heard, or a song or a dream.

3. God says that He is not surprised that we have pain
I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.

John 16:33

Dear friends, do not be surprised as the painful trail you are suffering, as though something strange were happening to you.

1 Peter 4: 12

Our society does its best to hide pain from us. Suffering is not often spoken about. Death and illness are brushed away to a place we don’t see. We are encouraged to look good, to feel good, to succeed and prosper; we are not encouraged to build character and endurance for the times of trial. So when it hits us it is a surprise. But God is not thrown by it, He doesn’t panic and say “Oh my word, look at what has just happened to Lloyd and Jacqui, what am I going to do now???” On the contrary God knows, He is not freaking out, He is not clueless about how He will respond.

4. God explains that suffering can be beneficial
Therefore since we have been justified through faith, we have peace with God through whom we have gained access by faith into this grace in which we now stand. And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit whom he has given us.

Romans 5: 1-5

This has been such an interesting concept: that God can take suffering and use it to produce good things in our lives. I don’t believe God is saying He inflicts suffering on us in order to grow us, but when it does occur, He can turn it into something good.
On the one hand it doesn’t make sense (certainly not in the society where I live - good things only come from ease, leisure, pleasure and comfort); but our experience has shown that He is indeed telling the truth. Matt has only just turned two, and in these 2 years we can already see the good that God has birthed through our disappointment. Here are some examples.

Lloyd has found that he has become a better doctor – he has more understanding and empathy for parents. God has used him a number of times to encourage parents who children with disabilities.

I have been able to reach out to other families who have children with disabilities and share how Jesus has been our strength.

We are both more gentle and sensitive to those around us who are suffering which has made us more effective for His kingdom.

We have grown in our relationship with God – it is becoming more real as we have worked through what we believe.

Our marriage has grown stronger as we have walked through this difficult time together.

5. God reminds us to remember the eternal perspective
Blessed is the person who perseveres under trial, because when she has stood the test, she will receive the crown of life that God has promised to those who loved him.

James 1:12

Life on earth is not all that there is to our existence. The bible is clear that once we die, there is more to come – an eternity in fact. And this eternity spent with God is going to be so good, that our sufferings here will be forgotten.

6. God says that has known suffering
He was despised and rejected by men, a man of sorrows, and familiar with suffering.

Isaiah 53: 3

This verse is describing Jesus and we know the story of how he suffered and was killed. In sending his son to earth and watching him die God has experienced and felt the pain of loss, grief, humiliation, rejection and abandonment. He does not relate to me on a theoretical basis because He knows, He has been through it. His compassion and His guidance come from a place of experience, not just head knowledge so to speak.

In Part Three we look at how we can respond to what God has said. Click here to go to Part 3.

Moses' mom's neighbour - Part One

Last year in October, Lloyd and I were given an opportunity to share some of our story and our learnings with our church during a Sunday service. I have finally written it up. It comes to a grand total of 7 pages so I will post it in four parts. Here is part one…

PART ONE

Moses’ mom’s neighbour
I can remember the day, the time, the minute. This was the moment when I knew that something in me had been changed and I was no longer seeing the world in the same way. We were on our church camp and listening to a sermon. The speaker was sharing about Moses (Exodus 2). Moses, as we know, was born at a time when the Egyptian Pharaoh had ordered that all sons born to Hebrews be killed at birth. The speaker declared with great enthusiasm that God always has a plan – and proceeded to talk about how Moses’ life was spared through the cunning of his mother and sister, and the hand of God. As I was listening to this, one question struck me:

What about Moses’ mom’s neighbour? Her son was not spared. I imagined Moses’ mom praising God, thankful for how her son was still alive, whilst her the neighbour was broken hearted at the death of her own son. Where was God for her? Did He not care, could He not have made a plan so that her son could also live?

I know that the old Jacqui would not have considered this; I would have gotten caught up in the victory of God as the speaker was doing. I would not have thought to wonder about someone like the lady who lived next to Moses’ mom, and how she dealt with her suffering. However, since walking the journey with my little Matthew God has opened my eyes to those who often melt into the background because their story is not about miraculous victories.

Our story
Whilst Matt was still in my womb we had a scan that showed that something might be wrong with our unborn baby. During that time God really encouraged us through the prayers that we received from many different people. We really wanted to believe that our child had been healed and was going to be born healthy.

Lloyd, as a doctor, had always grappled with the concept of healing, but chose to trust. He had a mental image of him standing in front of the church holding up a 100% healthy baby declaring God’s miracle. Things did not turn out as we hoped.

Matt was born with a genetic syndrome – which means that there is something missing from the cells in his body resulting in him having health problems, and it means that he will grow up much slower than other children. Although he is now 2, he looks and acts like a 1 year old. Children with Matt’s syndrome may have some of the following problems – they may never talk, their brains will work slower so they don’t learn in the same way as others, they may have problems with their eyes, their stomachs, their fingers and toes, their mouths.

The first few months of Matt’s life were really hard for us. He had feeding problems, he was always throwing up and he was ill. The most painful thing was, however his slow development - click here for a poem that I wrote during the first year that highlights the sorrow of having a child that took so long to appreciate that I was there.

We must be honest and say that we were disappointed that God had not answered our prayers in the way that we had hoped. We were confused because we know that God can heal, he can do miracles. We didn’t know how to pray anymore. We felt angry, lost, sad, guilty, alone, betrayed, and tired.

We are not the only ones
And that brings us back to the lady who lived next door to Moses’ mom – who would also have felt the same feelings – only hers would have been more deep and painful. If we look through the bible, we see that she is not alone. There are others who seemingly were overlooked when it came to receiving that miraculous answer to prayer:

Think about the Jews living in and around Bethlehem in the time just after Jesus was born – all boys under the age of 2 were slaughtered (Matthew 2: 16).

What about John the Baptist, he didn’t experience miraculous saving, instead he was beheaded! (Matthew 14:1-12)

And when Jesus healed an invalid at Bethesda pool? What a joyous day for this poor man who had been unwell for 38 years. But what a disappointing day for the “great number of disabled people – the blind, the lame, the paralysed” who were also lying around the same pool (John 5:1-15)? It does not say that Jesus healed them.

In Hebrews 11 we read about the martyrs of the early church who suffered for the gospel. No miraculous rescue for them, instead were tortured, faced jeers and flogging, chained and put in prison, stoned, sawed in two, were put to death by sword, went about in sheepskins and goatskins, destitute, persecuted and mistreated (Hebrews 11: 35 – 37)

If we look at the disciples of Jesus, all of them – except for one – were violently put to death.

We see that the victorious, miraculous answer to prayer doesn’t always happen. What does God have to say about that? .... We explore that in part 2. Click here to go to Part 2.

Walk with me

I recently read another mom's thoughts on the frustrating moments when people tell you that God must have thought you to be a pretty amazing person who could handle a kid with special needs so that is why he gave you one. They say that God doesn't give us something that He knows we can't handle.

I have heard this too and although I acknowledge people's motives good - they are wanting to be encouraging - the statement is actually very unhelpful. It can make you feel guilty because you know you aren't particularly amazing, and it can make you really question God. Not only is it an unhelpful statement, but I don't believe it is true from a biblical perspective. Ironically it is most often said by Christians.

I believe that good and bad things happen to all people. I believe we have a choice as to how we respond. If we welcome God into our lives and journey, we then have access to His mighty resources. The fruit of the Holy Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and selfcontrol (Galatians 5: 22-23). These things are in our lives because God lives in our lives, not because we are superhuman. So when people look at my life and the task of raising Matt - and they think that they couldn't do it. They must know that I can't do it either. It is only by God's strength, grace and the fruit of His Holy Spirit that I am loving Matt and caring for Matt in the way that I do. (Not that I am getting it right all the time - I am still learning to receive God's strength for all the challenges) I believe that any person can receive that strength from God too - it is not because I am particularly amazing, it is because God is.

I also don't believe in the statement that God doesn't give you a task that He knows you can't manage. In fact my experience of God is the opposite - I believe He calls us to tasks, visions and dreams that are way beyond our own resources.

Paul writes in 1 Corinthians v 9 & 10 "...God said to me, 'My grace is sufficient for you, for My power is made perfect in weakness.' Therefore I (Paul) will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong."

Look also at Moses and Gideon who achieved amazing things, they both started by telling God that He had got the wrong person for the job. Look at the people Jesus called as disciples - they certainly were not called because they were superamazing people. God calls ordinary people to do extra-ordinary tasks - but here is the thing - we do those tasks WITH God, in HIS strength and by HIS power. It is not something we achieve on our own.

God does this so that He can surprise us and the world with His glory and His power - so that when the task is done no-one will be in doubt that it was only achieved by His hand. And then people will be drawn to Him.

In the light of these truths, it would be more helpful for people to acknowledge that the task set before a mother of a child with special needs is hard. Rather than encourage her that she is super-amazing and she should continue doing it on her own, tell her to throw herself into God's arms for help.

Jesus said: Come to me all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light. (Matthew 11: 28-30)

It would be helpful if people - specifically Christians - truly realise that they are the hands and feet of Jesus here on earth. So every time they do something practical for a mother with a kid who has special needs, God uses that to make her burden lighter. By practical I mean:

• visiting or phoning to see how she is and letting her talk if she needs to,


• sending her text messages or notes of encouragement so she knows that she is not alone,


• making a meal for her family so that she has time to rest,


• babysitting (even for a short time) so that she can have some space to catch up with herself or her husband,


• actively praying for her, her family and her child


• when you are going grocery shopping, phoning her and asking if you can do hers at the same time (I'm not talking about you paying for the shopping, but the act of doing to shopping so she has more time)

Thank you to all of you who have reached out to me or to another mom who kas a kiddie with special needs. I know that it takes courage because it is awkward and often you don't know what to say. I know that you don't want to offend. I know that it is easier to hold back or stay away. I want to you know that I would rather have someone reach out and say something stupid than keep away. I will not hold it against you because this road is new for me too and I too am learning as I go along. If you are really brave you can ask me how best to support me and I will share with you. But whatever you do keep walking with me - you will never know how much it means.

Helpless...

Right now it is 8.39pm and I am so frustrated. Lloyd is in with Matt who has been protesting sleep for the last hour. This has become a pattern for the last while – every night Matt looks sleepy. We put him down and he hums and sings for a little while. Then he just starts crying and moaning.

The internal battle begins…. Should I leave him to cry…or should I comfort him. I always end up comforting him eventually. I wonder if he is sore or in pain??? His teeth have been taking forever to emerge – could it be that??? I have given him some basic pain relief – but is that enough??? Does he need something stronger??? Are the pain tablets working yet – his digestive system is so slow?? I go in cuddle him, he settles. I leave, he cries and screams.

Is it that he is not tired??? No he woke up just before his lunch at 1pm. I go in cuddle him, he settles. I leave, he cries and screams.

Maybe it is his constipation – when did he have a poo??? No he poo-ed today so it can’t be that. I go in cuddle him, he settles. I leave, he cries and screams.

Is he thirsty? Did he have enough to drink today? I'm sure he did...but maybe not??? I go in cuddle him, he settles. I leave, he cries and screams.

Is this just a stage? Has he realized it is more fun to be awake than to sleep? Or is there something seriously wrong? Will he ever want to sleep again? I go in cuddle him, he settles. I leave, he cries and screams. And so it continues and continues.

I feel defeated and tired. Then the resentment creeps in – I feel like I give him so much of my attention and love throughout the day, I really would like some time for me in the evenings. I would love to have an hour to just chat to my husband before my brain becomes a fuzz of tiredness. I resent the fact that my evenings are dominated by the little cry monster. It is so hard to plan evenings out because by the time we settle him it is so late. We haven’t had supper before 8pm for weeks, and if we eat at 8pm then that is a good night!!! It is amazing how helpless and lost I feel in all of this. Add to that a good dose of confusion and guilt. Parenting can be really tough!!!

Waiting

Raising a child who has developmental delay is all about waiting. Waiting for the next milestone. It is all about learning how to cope with the waiting, and to find ways to live life to the full whilst you are waiting.

I think there must be a built in “biological milestone clock” in a parent that gets really uncomfortable when one’s child is not meeting milestones in the usual way. Rationally I know he is delayed and I don’t have any real reason to want to rush him. In fact I am convinced that it is best for him to develop at his own pace. Yet I have this strong desire to see him reach his next milestone.

I found it really hard to wait for Matt to crawl. My first coping technique was to set dates in my head – “I will not think about Matt needing to crawl until he turns 1 years”. This helped me not obsess about it and get on with life. The only problem was that when he turned 1 he was still not crawling and I had now set up this expectation in my mind. So BIG DISAPPOINTMENT when that date arrived and he was still sitting. I set myself a few more dates to look forward to, yet each time the anticlimax was too much to bear - so I tossed that coping mechanism.

It was then that I discovered the technique of celebrating - by intentionally looking out for and rejoicing in the tiny, mini, small achievements as well as the big it has helped me to stay positive.

I have found it easier to live life whilst waiting for Matt to walk. I think it is because he is fairly independent with crawling, and is exploring and interacting with his environment. So walking doesn’t seem to be as desperately needed as crawling was when he was just sitting. I think I have also worked through more of my grief with Matt’s syndrome and am more at peace – so that makes the waiting easier.

However the last few weeks have been increasingly challenging. Matt seems to have the capacity to walk but doesn’t seem that interested in doing it on his own. He will walk well with me supporting his hands. With his dad he will walk with only one hand supported (he seems to think that mom needs to still give him two hands). Sometimes when I try to encourage him to walk he will just drop to his knees and choose crawling. Most days I am fine with this and don’t force him. But lately I have found myself getting frustrated with him, irritated that he doesn’t want to try, and annoyed that he prefers crawling. I think when there was no sign of “walk readiness” it was easier to focus on other things and just get on with life. Now that he seems to be on the verge of walking, the fact that is taking so long is slowly chipping away at my patience!

So I guess it’s time for me to get back to being focused on celebrating the tiny, the mini and the small achievements that do happen every day!

Those "ow" moments

I have been thinking a lot about how to manage my interactions with my friends who have kids. Often when I am visiting or chatting with them something will be said that will remind me that Matt is different and cannot do what their kids can do. And that hurts. Up until now I have kept those feelings to myself - I have not been sure how to talk about it without making them feel bad, and usually the feelings are so strong that I am scared that if I do talk about it in that moment I might explode my pain uncontrollably over everyone (not a pretty sight).

I recognise that in each stage of life I am going to have to deal with the fact that Matt's journey is different. So I am sure that those painful feelings are not just going to go away forever. Sometimes I think the easy option is to just withdraw from those friends who have said or done things that hurt me. But I'm sure they won't want that (and then I will have fewer and fewer friends - which I don't want). So I need a strategy that will allow me to be real and genuine about my struggles without blaming or overwhelming my friends. I don't want them to feel like they can't share anything with me or that they can't celebrate their kids milestones with me.

A friend of mine who has been single for many years (but now recently fallen deeply in love) shared with me how she used to cope when her single friends found their Mr Right whilst she was still alone. She recognised that it was a hard situation that could not be escaped. She would take responsibilty for her feelings, but she would chat to her friends if their actions or words were insensitive.

This has given me a strategy to manage those "ow" moments.

ONE I want to chat to my friends and acknowledge that Matt's journey is different (but not less valued) so there will be times when (though it is no-ones fault) I will feel sad. There is no escaping this fact. These will be tough moments that our friendship will need to endure.

TWO I commit myself to taking responsibility for the negative feelings and reactions I have that are due to me being OVERSENSITIVE to what my friends my do or say. God and I will work on those feelings and reactions. I will not make this anyone else's baggage.

THREE I will however share with my friends when I feel they have done or said something that is INSENSITIVE to Matt or his journey. I choose not to withdraw resentfully in silence, but rather gently share with them the impact of their words or deeds. And I will choose to forgive quickly.

This is still very much work in progress. I am yet to take action. But I feel hopeful that being proactive about dealing with the "ow" moments can deepen my friendships and free me from carrying around unnecessary pain and resentment.

My day of extremes

This morning I read a blog of a parent who has a child with a severe disability. This precious boy has no muscle tone (so he cannot suck, swallow, or lift his head), he can’t see well, is non-verbal, suffers with seizures and frequently aspirates. I was VERY humbled as I read her blog. I was amazed at her strength and courage, even though she sometimes feels that she has neither. I felt that the issues we faced with our Matt were very small in comparison with the challenges that she faced. I was deeply grateful for Matt and that in the light of this other little boy’s story, our lives seem easily manageable.

This afternoon we popped in to visit our good friends who have an 11 month old boy. We had not seen them for a while and I was looking forward to reconnecting. As we walked into their home we were greeted by their precious boy who was boldly walking. I was crushed. The old enemies - hurt, disappointment and sadness ambushed me. It took all my strength to hold it together and greet our friends. I am not jealous of their child, in fact, I was thrilled that he had started walking. Yet it reminded me that Matt is…different, that Matt’s life journey is going to be so different, and that this journey is hard and in some ways is always going to be hard.

I am still trying to make sense of all of this – how I can feel so positive about Matt when I compare my life to one person, and feel so down when I compare our lives to another. I know in my heart that comparing is Bad and Very Unhelpful. Most days I am safely able to interact with others without Comparing, but today I wasn’t.

9th April 2008

Dear Speech Therapist

Thank you for the assessment report that you and your students carried out on our little Matthew. We so appreciate the time and the effort that was given at no charge and we really do look forward to ongoing partnership with you. I recognize your (and your students) deep commitment to helping children reach their full potential in communication.

I want to share with you a little bit of my experience of being a mother of a child who has speech delay. In so doing I will also comment on my experience of the assessment report which may be of value to you as you seek to empower the parents of the children with whom you work.

Having a child with delay can be a very hurtful experience whilst also being an enormous privilege. When I was first told that Matt had a syndrome and would be delayed, I did not know what that meant. I feared the worst – that he would never be able to do anything, never be able to connect with me, never be able to feel love or express love. As he has grown and developed, each milestone is like the BIGGEST gift and each is a REASON TO REJOICE. This is the privilege – to watch the miracle unfold, to see him become all he can be.

When I am with him, alone, we have so much fun. I don’t see him as delayed or different. He is my Matt and I am helping him to discover the next step in life – whatever that may be…to crawl, to taste something new, or to learn what ‘clap’ means. I don’t feel sad or discouraged when it is just him and me.

Your assessment report was positive in that it helped me recognize that certain of his behaviours do indicate that he is moving towards communication. This was encouraging. I also found that the recommendations empowered me with information about what I can do to help him reach his potential.

The hurtful part of raising a child who has delay happens when we are around other children of similar age to Matt. There the delay becomes so apparent. No one can deny that he is different, that he is not the same. My heart breaks when I see what other children his age can do. I have to fight back tears. I have to muster all my energy to counter the discouraging thoughts that tell me “Matt is not good enough, Matt is a failure, Matt is so far behind and is therefore worth less”.

My only weapon against this discouragement is to not compare Matt. I have to choose, every time I see another baby or toddler, to not compare. I actively speak to myself saying “Matt is doing fine. There is no point in comparing my Matt who has part of one of his chromosomes missing, with a child who has all his chromosomes. If I make this comparison then I may as well compare a child who has an amputated leg with one who has full use of his leg and expect them to run the same distance.” This is what I tell myself – often, if not everyday.

In the light of my ongoing, daily battle to NOT COMPARE Matt, you can imagine the discouragement I felt when I read the following in your assessment report:

“Mathew was placed in the 3-6 month age group in terms of communicative ability. He is emerging at a 6-9 month level.”

I fully recognized that your report was not intended to discourage me, but I found the comparison with normal unhelpful and disheartening. I am aware of his delay, but I am equally aware of how helpless I am in terms of fixing him and somehow making him “normal”. So even though it is standard practice in the medical world, I would rather we don’t even compare him to “normal”. I recognize that as a speech therapist the age related milestones provide you with a bench mark. My recommendation to all therapists would be that they note this in their own files, but omit it when reporting to parents.

I was so encouraged reading that book you recommended “It takes two to talk” (Pepper and Weitzman) because the authors were able to outline the stages of communication development (Discovers, Communicators, First Word Users, Combiners - see page 4) without linking it to age. I was able to plot which stage Matt was in and then get input on what I could do to help him move on to the next stage. That was empowering and encouraging.

I am certain that, similar to my profession of social work, speech therapists do not work with a child in isolation but spend time and effort in engaging the parent and building partnership with the parent. I am hoping that my perspective expressed in this letter can be used to help you and your speech therapy students to have a deeper understanding of the impact of assessments, and to word assessments in such a way that harnesses hope and action from the parent, rather than unintentionally inflicting discouragement and despair. I use the word unintentionally with great sincerity because I have NO DOUBT that you and your student’s motives were only to encourage and empower us as parents.

I really look forward to your response to this letter and to our ongoing working relationship.

Kind regards,

Jacqui