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!

20130420_15391920130420_15374220130420_153714
Emelia’s friends, Shanisha and Evie, also enjoying a donkey ride!

***

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.

Asa’s First Christmas Party

Today was Asa’s first Christmas party at Scallywags, the parent and toddler group in our church. It was a bit of a mad rush, as always, to get out of the house early enough to make it worthwhile going! Wolfing down breakfast, we got ready. I packed Asa’s bowl, spoon and banana, huge change bag and Emelia’s bag, put Asa in to the car seat and huffed up the steps.

We got to Scallywags and Emelia was happy to eat her party food with the other children, while I remained in the ‘baby corner’ to give Asa his breakfast. On days like this where I need to be out of the house early (well, early for me!), I’m so thankful I can chuck a banana in to the change bag and feed Asa out and about! I’m very relieved he likes bananas!

It was while I was feeding Asa that I stopped to look at the other precious little lives in the baby corner – Asa’s school buddies probably. Two sets of twin boys and another little baby girl. This is the first time Asa has been awake and around other little babies, so I have never intentionally or otherwise compared him to another baby. I noticed these babies seemed much more physically developed than Asa, in terms of their gross motor skills. Yes, they are a few weeks older than Asa, and yes I know that all babies develop at different rates. Even amongst ‘typically developing’ babies there are massive variations. But in my heart I felt sad. I felt we were the ‘different’ ones in a room full of ‘normal’.

As tears started to sting my eyes, I had to look away. I kept trying to tell myself that it didn’t matter; that all babies are different and I tried to focus simply on feeding Asa his mashed banana. I felt my eyes wander every now and then and saw these little ones attempting to roll over, waving their chubby arms and legs, holding toys, babbling away in secret baby code. Then I looked at my beautiful baby boy who didn’t seem as strong… who isn’t anywhere near rolling over… who can’t yet hold a toy… who doesn’t have (yet) the usual baby babble… And my heart ached. Please don’t misunderstand; I am in no way jealous of these other mums. In fact, I probably couldn’t cope with twins, so hats off to them! I am blessed with two beautiful and healthy children. This is my frustration – I can’t really explain it in words. I just felt a bit heart-sad I suppose.

***

Banana totally demolished by little Asa (followed by banana scented sick – eww; I hate reflux), we headed off to see ‘Father Christmas’ in the main hall. I put on Asa’s softband hearing aid, feeling rather conspicuous. We sang a few songs and then all the children went to get a small parcel from Father Christmas. Wonderful! Emelia was rather excited, running around with her usual boundless energy; Asa snuggled up on my lap, watching the comings-and-goings. I was talking to one of the kitchen volunteers and noticed someone across the hall pointing over in our direction and talking to her friend. I looked behind me and as I was against a wall, obviously there was no-one else there behind me… I was already feeling vulnerable and disheartened, so maybe this was more in my head than in reality, but I strongly felt this person was pointing at us – I couldn’t see who else it might have been. It could have been something as innocent as ‘cute baby’… or ‘I wonder what that baby has on his forehead’. Or it could have been something else. But you know what I’d prefer? I’d love people to come up and ask me if they have a question about Asa or Down’s syndrome. I’d happily answer questions about the softband, or hearing loss (not that I’m an expert!) or how I am doing or how Asa’s doing. I’d love not to be pointed at or talked about… I guess I understand though, to some extent…

***

Today has been ‘one of those days’ I suppose, where my heart has been tugged as I realise again that yes, Asa is different. Right from when that extra copy of chromosome 21 was made, he was marked to be different. This is the way God has designed him, right from when sperm met egg. We are all different because of the impact of Asa in our life. We are blessed. We are busy. We are happy. We are stressed at times. But we are family. This is our life. It is a little bit different. But being different isn’t bad. It’s something to be celebrated – and I’ll get back to more positive blogging soon. This blog was never designed to be a ‘rose tinted’ version of DS, and for those of you who know me will know that I am usually a pretty honest person when it comes to sharing my life – the ups and the downs.

***

Asa 22 weeks _Christmas Jumper
Asa’s new winter jumper! :-)

Orthoptics

10.30am today, Asa had his second orthoptic appointment at UHW. I wasn’t so nervous this time. Probably because I assumed the eye tests would not be as invasive as before… I was wrong! The same pattern of three lots of eye drops ten minutes apart, followed by a call in to the doctor’s office. There were two trainee doctors in with the senior doctor today. He explained what he was going to do – check the eye condition, followed by a developmental eye test. Just like before, Asa didn’t stay still or keep his eyes open, so he needed to have the anaesthetic eye drops before the nurse held him down so the doctor could clamp his little eyes open, one at a time…

Asa howled, much like he did before. Even though I knew what to expect, I still got so upset – and again, mummy ended up in tears! The poor trainee doctors didn’t know where to look as I sniffled and rummaged for a tissue in my bag. They were male and probably not used to crying women! I hated being there on my own. I know, I need to ‘man up’ as Sian Hampson would say! I think though that any mother hearing her baby scream while being held down and seeing metal clamps in their baby’s eyes would probably get upset too… It really isn’t a pleasant experience for me, let alone Asa…

Next, the doctor told me he was going to check Asa’s eyes to see if he would need glasses, even at this early stage. Oh wow, I hadn’t known this was possible at such a young age, and ‘sicky stomach syndrome’, as I call it, reared its ugly head. Asa sat in my arms as the doctor dimmed the lights and shone various lights in to Asa’s eyes to track his eye movements. I prayed all through this stage, silently of course. When the doctor was finished he told me that at the moment Asa’s eyes are the same as any other typical baby and his eyesight is ‘normal’. Asa will need regular eye exams as about half of all people with Down’s syndrome will have vision problems. Our next appointment is in August, so for now we’re thankful that Asa has healthy eyes, that he doesn’t need glasses and that we have a few months to breathe before his next check up comes around.

Please join us in praying that Asa’s eyes remain healthy and that he won’t need glasses! (Not that there’s anything wrong with glasses, I wear glasses! But I’m not sure about glasses on a baby or toddler – I can imagine they would get pulled off a lot and easily damaged!!!).

***

Mummy&Asa 22 weeks old
Much needed cuddles with mummy… Oh, how we love you and your sister.
You are both amazing! -x-

Shattered Dreams?

P1080929

Unable to hold our son that night... :-(

Three months on, and I still see these images in my mind… How bittersweet those first few days were.

***

I love the devotionals and blogs written by ‘Girlfriends in God’. These three women write so beautifully for Christian women about faith, life and love, and everything in between. It’s for parents, for busy professionals, for young women and older – for women everywhere.

I don’t read these devotionals every day. Today I read the post from 3rd October. I found this post so moving, so inspiring, so helpful. It’s about shattered dreams that we may face. This may take various forms, such as a divorce, the heartache of infertility, the death of a child, or losing one’s job, and so on.

Here is a snippet from the devotional:

“Every day I receive emails from women who have had their dreams shattered. A husband has an affair, becomes addicted to pornography, abuses the children, or deserts the family. A child gets caught with drugs, becomes pregnant, or dies in a car accident. Parents divorce, friends betray, careers come to an abrupt halt. The list is endless. So what do we do when our dreams are seemingly destroyed? The answer to that will shape the rest of our lives.

 

Does that mean we give up our dreams? I can promise you this, whatever dreams you have for your life, God’s dreams are greater. The power of the Holy Spirit the disciples received after Jesus’ resurrection, and the impact they made on the world thereafter, was beyond their wildest dreams. That’s what God does with a heart that is wholly yielded to Him. That’s what He does when we give our shattered dreams to Him. I have learned to stop saying, “Why me?” but instead start saying “What now?” ”

***

When Asa was first born, it was incredible – now we had a baby boy and a little girl! This is the dream right? The dreams we had… Daddy would play football with his boy, teaching him to kick the ball, to ride a bike, to love God. Mummy would choose some adorable little outfits, pray with and for him, wash football kits. Emelia would tease her baby brother, try to dress him in girly clothes, force him to wear makeup or play hairdressers… Perhaps!

Later that night, in the Neonatal Unit, the nurse told us that our perfect little boy had some features of Down’s Syndrome and that the doctor would meet with us tomorrow to discuss it.

*BOOM* – shattered dreams. Would Asa ever get to play football with his dad? Would he be sporty at all? Would he…? Would he…? Would he…? The questions in my mind kept coming. That was possibly one of the worst nights of my life (other than the second night in hospital). My baby was not with me, and was poorly, fighting for oxygen and fighting an infection upstairs in the NNU. My husband was not with me – he was home without his wife and new child. My daughter was not with me – to make me chuckle or distract me from my pain. My God – yes He was with me. Thankfully He is always with me. The Bible tells us He never leaves us or forsakes us (Hebrews 13 v 5), and I know that to be true firsthand.

 P1080936Daddy and his boy, aged 2 days old.

The next day, Saturday 7th July, we met with the doctor who confirmed his suspicions of Asa’s DS. We signed the consent forms for the necessary chromosome testing in a haze, a fog of fear, of worry and of pretending to be fine. I can honestly say that Jon and I thought our dreams were shattered. That second night I sobbed and sobbed, praying God to take the DS away, feeling utterly terrified and alone. What made it worse was that night Asa had two seizures and the doctor couldn’t tell me why.

While pregnant, even though we knew our baby faced a 50% chance of having DS, we didn’t really think it would happen to us. How arrogant we were. How ignorant and foolish. I wish with all my heart we had done our research… We would have seen that our dreams needn’t have felt like they were shattered. I wish then what I know now. That DS isn’t the end of the world. But I can’t go back in time and change that initial reaction. Those ‘bad’ days are lost forever, and I feel guilt for not fully being there for my son. I adore Asa, we both do. He is his own person. DS doesn’t define him. Our dreams for him are similar to Emelia’s – for us to raise him well, for him to be happy, to love God, to go to school and learn, to fall in love and to be loved. Are any of these dreams sounds familiar for your children?

***

Sometimes life throws us a curve ball – something that we don’t expect, or imagine, or want, or know how to deal with… Stresses come. Illnesses happen. Death steals. Sin destroys. Yet there is one thing we can do – we can stop saying “why me?” and ask God “what now?” Trust in Him, lean fully on Him with all your heart and go with it.
(It’s ok, I’m telling myself this too, not preaching to you!)

P1090281