Donkeys, Reflux and Love

The sun is shining in Paignton. We’ve had a lovely time on the church weekend away so far, and today is our last day. It’s also been a bit stressful. Both Emelia and Asa were unsettled on Friday night – Emelia was awake until about 11.45pm. Asa was being a monkey and rolling over in his travel cot every five minutes. I was confined to the hotel room in the dark, with no wi-fi or phone signal. I suppose being somewhere new, and everything being different, most children would be the same.

With that behind us and a fresh start the next day, we were able to enjoy some of the teaching from Simeon Baker, our guest speaker. We had a free afternoon yesterday, so we headed to a lovely restaurant for lunch as a family. The venue had beautiful views from its elevated position overlooking the pavilion and the beach. After lunch, Emelia joined the other children from church in the park while we tried to rock Asa to sleep in the pram! Donkey rides were also available – and as you can see, Emelia seemed to enjoy it!

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Emelia’s friends, Shanisha and Evie, also enjoying a donkey ride!

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I’m going to take a moment to be open and honest with you, friends. Last night, Asa’s reflux was really bad. Vomiting everywhere. I couldn’t escape the smell of sick as it was on my scarf, t-shirt and trousers, not to mention on his bib and sleepsuit. I was teary and snappy with Jon and I wish with all my heart I didn’t take my frustration and hurt out on him. I’m not proud of how I react sometimes, and I more aware than anyone of how impatient I am, and how quick I am to get angry. Sometimes when I’m super-stressed, particularly lately, I’ve sadly been questioning God and why He chooses sometimes not to answer our prayers, especially ‘good’ prayers for healing for a loved one. I say ‘sadly’ because my faith has usually, nearly always, been strong…

At times when the reflux is bad, I cry out in prayer to God for him to heal Asa. Literally, cry. But for some reason, He doesn’t… This isn’t a prayer for material things, for more wealth or power, or personal gain, but for my precious little boy. I know it’s not ‘a big deal’ in the grand scheme of things related to Down’s syndrome, but it affects me, stresses me and upsets me, not to mention Asa. I wish I was stronger, more resilient, more trusting. Friends, at times, I feel so alone, even abandoned by God – and it upsets me that I would even have these feelings. As a youth leader in the church, I often remind the young people that we cannot trust our feelings. They fluctuate and are not always accurate reflections of how things really are. Sometimes, my heart and my head are in opposition, but I plod on anyway, rebuking the negative thoughts that occur in my questioning. Therefore, I have to keep reminding myself that God IS good. That I am NEVER abandoned by Him. That He sees our family is hurting, feels our pain. That He walks with us through the good times… AND the bad times, the disappointment and mire of our troubles.

This leads me on to Simeon speaking in communion this morning. He spoke for only five minutes, but it was as if God was speaking directly to me through him. He spoke on two verses. Yes – Ephesians 5v1-2:

“Follow God’s example, therefore, as dearly loved children and walk in the way of love, just as Christ loved us and gave himself up for us as a fragrant offering and sacrifice to God.”

The key part of the message that my heart thirsted after was this phrase, dearly beloved children”. It struck me so powerfully that I began to silently cry as I listened intently. God was clearly showing up for me, reminding me – and everyone there – that He does love us. He calls me ‘dearly loved’ and that is so amazing, that the God of the heavens and the earth loves me, despite my many flaws and sometimes wavering faith. What’s more amazing though is that He calls me ‘child’. I am His, and He is mine. My perfect, wonderful, awesome Father in Heaven calls me His.

I am so grateful for Simeon bringing these truths out this morning. It was exactly what I needed. Don’t we all just need that reminder sometimes? That we are loved, precious and worthy. You, reading this, are loved by God as a dearly loved child. Take a moment to absorb that fact, and praise Him.

Looking Back, Looking Up.

I am behind with this blog. I am still catching up from a while ago – I scribble down notes, or make a quick rough draft in Microsoft Word, and finalise it when I can. Part of the problem is that Jon and I can’t decide on a name for the blog! Get your act together Lizz!

[Author’s note: We finally decided on Down With Asa, one of the first we ever thought of! Funny yet frustrating]

Tonight I have been working on the timeline of Asa’s life so far, from the pregnancy through to now. Simultaneously, I have also been working on the pieces of the puzzle that made up the prenatal potential diagnosis of Down Syndrome, through to receiving the confirmation a few days after Asa was born.

As a result, it has been an emotional night reflecting on Asa’s journey through the pregnancy and those early weeks in the Neonatal Unit at UHW. It always happens when I’m working on the blog. Going back over those memories that would prefer to stay hidden in the deep, dark place of my brain.

Tonight I’ve been reliving the moment we found out there was a possible problem and the awful statistics given to us that are forever burned into my heart. 50% chance of a chromosome abnormality, 10% chance of a heart defect (but no chromosome abnormality), 15% chance the baby would not survive (e.g. miscarriage or being stillborn), 25% chance of no complications and a typical, healthy baby. When we were first given these statistics, I saw them every time I closed my eyes, in bright yellow lights. It was awful. Now I am thankful that these memories are fading, and that God comforts us.

“He [God] tends his flock like a shepherd:
He gathers the lambs in his arms
and carries them close to his heart;
he gently leads those that have young.”

~ Isaiah 40 v 11

So while those horrible memories and statistics are at the forefront of my mind again as I work steadily on Asa’s story, we can move forward in the knowledge that both our children are perfect, healthy, and so very precious… Also in the knowledge that we have an awesome God who never, ever leaves us, and who is gently guiding us.

Sadness yet Hope

Over the past week or so, the first line of this hymn has kept coming back to me time and time again: O Love that wilt not let me go”… However as I didn’t know the rest of the lyrics, I finally ‘googled’ it tonight. Oh, wow. This hymn could have been written by me if I was clever enough! It explains so much of how I am feeling (not all the time, but occasionally I allow the dark clouds to hang over my head) – the sadness, but also the hope and acknowledgement of God’s love, compassion and goodness.

Although it’s an old hymn, I love this new version by Indelible Grace – click here to listen.

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O Love That Wilt Not Let Me Go
George Matheson (1882)

O Love that wilt not let me go,
I rest my weary soul in thee;
I give thee back the life I owe;
That in thine ocean depths
Its flow may richer, fuller be.

O Light that followest all my way,
I yield my flickering torch to thee;
My heart restores its borrowed ray,
That in thy sunshine’s blaze
Its day may brighter, fairer be.

O Joy that seekest me through pain,
I cannot close my heart to thee;
I trace the rainbow through the rain,
And feel the promise is not vain,
That morn shall tearless be.

 O Cross that liftest up my head,
I dare not ask to fly from thee;
I lay in dust life’s glory dead,
And from the ground there blossoms red
Life that shall endless be.

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Some photos from Asa’s tummy time earlier this evening – he’s doing so well with this!

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Letter From The States

We had the following letter today from my friend’s pastor, Steve. I have never met Steve. I have never spoken to him. He lives in California with his wife and grown up children. My friend Chloe is working with the church there, doing wonderful things.

Steve heard about us having little Asa, who has Down’s syndrome. His son, Mark, also has Down’s syndrome. He felt compelled to write to us, to encourage us and remind us of our important role in raising both our children. I have read this letter several times, and it is incredibly moving each time. Steve is so open and honest, and it felt like my heart was being pierced the first few times I read it, through blurred and tear stung eyes. I think this may be the turning point in me fully coming to terms with Asa having DS. It’s as though Steve has affirmed that any negative feelings I may have once had were valid at the time but don’t matter now – that in those first few weeks, that was probably the worst I felt about my baby. How things have changed! He has affirmed that it’s ok to be upset and confused about how our new life many look…

So Steve, a new friend across many miles, I publically thank you and pray that this letter may inspire or encourage others out there too. Even just one person, regardless of whether they have a child with DS or just a friend reading our updates.

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Lizz & Jon,

Chloe just told me that you have had a baby with Down’s Syndrome several weeks ago. The subject came up because my son Mark was just in here making us laugh. Mark is 29 years old and also has Down’s. I asked her if I could write to you and tell you what our life has been like with our son. We went to the hospital not knowing anything could even possibly be wrong. Yet when I looked in my new son’s face I knew the truth. I was very upset but mostly just confused and did not know what to feel. We thought we had failed somehow or been forgotten by God. I was very numb and when people called to congratulate me I didn’t know what to think.

My pastor was out of town when Mark was born yet when he heard about our situation he called me on the phone. He said that God must have thought very highly of my wife and I to have given us such a gift as Mark. This has proven to be the most true statement we have ever heard in our life. The genetic specialist said, this baby will just require more love, and he will return more love to you than you will be able to give. A parent of a Down’s child came to the hospital and said, this right now is the worst you will ever feel about your baby having Down’s. These statements also have proven to be true.

 Lizz and Jon, yesterday was my birthday and so many people told me that I have been a blessing to them; Chloe made my cry with the things she said to me. The reason I tell you these things is that who I am and what I do, is only because I have Mark in my life.  I am a better man, I have love for others, my other children are great people, I have a soft heart, even my fathering of my church people is because of him. I can cry in front of people because of my son and his unconditional love in my life. Hold on to each other and love this child more. Learn from your baby and let God have His way in you through this time. When you hurt, love more and you will one day testify as my wife and I have that we shudder to think who we would be today if it wasn’t for Mark in our lives. When I pray I say thank you for such a gift as this boy. Lizz and Jon, God must have thought very highly of you to have given you such a gift. Thank Him and cherish and love your child and more love will fall back upon you than you can possibly imagine.

Love,

Pastor Steve Orsillo