Tonight has not been a great night. Tonight has been one of those fear-stricken, heart-breaking, joy-stealing kind of nights. I get like this sometimes, where I allow – I choose – fear to rule over faith in my wonderful Lord. I hate feeling like this.
Can I just say, I am not depressed, in case anyone is wondering? I don’t want people to think I’m sad all the time, because I am not. Nor am I rejecting Asa by feeling sad sometimes, because I love him very dearly. I am rejecting the DS, which is impossible, as it is literally a part of him, in his very DNA and that makes him who he is. But I am scared of the unknown future. I am lonely and upset that our life is different than expected. Not in a bad way, it’s just different. (Remember the ‘Welcome to Holland’ piece of writing?)
Alas, I cannot help myself, for I am weak and miserable tonight. Jon and close friends will tell you that I am a worrier. Regarding DS, I read a lot of information on websites – all the positive ones I lap up in eagerness, and all the negative, scary ones seem to build up without me realising it, until a floodgate is opened in my heart, and an outpouring of what I can only describe as grief gushes forth and tears fall like red hot lava.
I came across a DS site for new parents. I clicked on the ‘real story’ section, and I realise that these stories from parents, siblings and those with DS themselves, are supposed to be positive and encouraging, but tonight, I have not found this to be the case. One of the stories that most upset me was about the effect of DS on siblings, and as much as it was supposed to be encouraging, I just felt extreme sadness for Emelia. There were other stories too that tugged my heart or caused fear. In the end, it was too much for me. I ended up getting very upset, sobbing for God to take the DS away from our precious boy. I prayed for every single part of his body:
…Head and brain development…
…his stridor (noisy, squeaky breathing)
…stomach and reflux
…his low muscle tone
… ability to walk
I sobbed as I prayed for each of these body parts and developments. I know this post may offend families of those with a disability or DS, but I’m being honest and very vulnerable right now. Usually when people ask me how I am, I am real with them. It’s who I am. Why would I be different with an online format? If you don’t like it, you don’t have to read it.
As I was praying tonight, alone in our bedroom, I asked God to send Jon down to me without me having to call out to him. I needed my husband to support me but I couldn’t move. A couple of minutes later, Jon came downstairs and found me in a bit of a state. GOD IS SO FAITHFUL. Jon prayed with me, for me, for Asa, and indeed for our whole family. He is my rock and is remarkably strong.
After I had cried my way through each of Asa’s body parts, I had the idea of asking people in our church to volunteer to pray for a specific area of Asa’s development and continue to do so as he grows… I’m not sure if this will come about as it could potentially make people feel awkward. However, if anyone would like to pray for a specific development, then note it in the comments or let me know in some way.