My journey into motherhood wasn't an easy one and God has been the anchor through this storm. I often talk about the feeling of peace I had during my pregnancy and I have said to many people that I didn't really struggle to trust God during those weeks when we found out that Daniel had Down Syndrome. Not only did we feel a sense of peace from God, we felt very blessed to have so many people praying for us. Our church community and friends and family further afield were incredible at praying for healing - something we were not able to bring ourselves to do - and their prayers were answered when Daniel's stomach was connected up perfectly!
In those early weeks in hospital, both before delivery when Daniel nearly died, and after he was born in intensive care with heart problems and an exceptionally severe case of jaundice I spent a lot of time just being quiet before God. I couldn't bring myself to pray eloquently or even vocalise my prayers. I just remember a lot of quiet and listening over and over again to the Getty's song Still, My Soul Be Still.
The first verse in particular was like a meditation for me. I listened to this about 10 times in a row while waiting to be called to theatre for my planned section. (Interestingly Daniel completely spaces out to this song even now!)
Still, my soul, be still
And do not fear
Though winds of change may rage
tomorrow
God is at your side
No longer dread
The fires of unexpected
sorrow
Chorus:
God You are my God
And I will trust in You and
not be shaken
Lord of Peace renew
A steadfast spirit within me
To
rest in You alone
During the early months, we muddled through like many parents do. Daniel's feeds took up to two hours and his breathing was very difficult. By February we were back at the Royal for surgery. Throughout it all, I knew God was in control and I trusted He would bring us and Daniel through these days.
However, in the past few weeks, when Daniel turned about nine months old, things have changed. I have started to wilt in my positivity about Down Syndrome. My confidence to parent his special needs has faltered. It seems so labour intensive, a lot of hard work, and the onus is on me to be on the ball with things like his physiotherapy, Makaton signing and health conditions. I also can suddenly see a vast difference in what Daniel is able to do and what other babies his age are achieving. I know I shouldn't compare, and actually don't think I am comparing, it's that as my first baby I've been naive about how well Daniel is doing in comparison to the 'typical' child. Last week I met a mum with a daughter who was born a few days after Daniel and she is crawling. I was completely shocked as Daniel is so far from this milestone, and when I googled it (I know, I shouldn't have!), I discovered most babies learn to crawl between seven and ten months old. For children with Down Syndrome, with early intervention, crawling will happen between ten and twenty months. Before Daniel arrived, I didn't really appreciate much of what Down Syndrome meant for a person apart from the learning disability. For babies with Down Syndrome physical milestones are significantly delayed and often need a considerable amount of intervention. This is due to the low muscle tone that people with Down Syndrome have, the learning disability, and the health complications that can make moving around more difficult. It's almost like Daniel needs to be taught the things another baby would do automatically. Throwaway comments by people over the last while, like when Daniel rolled for the first time, "Ah, he'll be running around before you know it", have hurt me. He rolled after months and months of daily physio sessions. He didn't just do it like another baby would have.
I realise that all these issues that have arisen over the last few weeks are focused on me. On my ability to parent. On the work I have to do with him. On the fact my baby is delayed in his development. I had stopped looking to God for the strength to face each day and had looked to myself. God promises that He lifts us up on wings like eagles. With Him at the centre, I can relax knowing it's not all on my ability to do anything. I have to renew my trust in Him that Daniel is His and He cares for him so much. Although Daniel is weak, God is strong. The last day or two, I keep singing Everlasting God by Chris Tomlin which is based on Isaiah 40 and seems to bring together these points.
Strength will rise as we wait upon the Lord
As we wait upon the Lord
As we
wait upon the Lord
Our God, You reign for ever
Our hope, Our strong
deliverer
You are the everlasting God,
The everlasting God,
You do
not faint, You won't grow weary
You're the defender of the weak
You
comfort those in need,
You lift us up on wings like eagles
It helps that God has blessed me with two fantastic friends that I pray and do a book study with once a fortnight, and the icing on the cake is that one of those friends is a speech and language therapist and the other a physiotherapist! Last night we sat and chatted about what Daniel is doing. They reassured me that yes, he is delayed, but that he was doing really well and I was ensuring that all the things that can help are being done. Most importantly, we talked about perserverance through trials, how God uses trials to help us see Him and to perfect us and the challenge of facing suffering in a way that glorifies God. We are all facing our own personal trials of different kinds at the moment and I have felt a renewal of Spirit and strength to face the challenges in my life in the knowledge that God gives me strength and I can trust Him to help me be the wife, mother, and friend I need to be. Our God really is an awesome God.
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