I thought I’d put together a little something for those on the outside looking in.
How to support parents affected by Craniosynostosis. Even if they don’t ask for it…
You see, they have this new baby, having a baby is hard but having a baby with Craniosynostosis (or any health condition for that matter) is 10 times harder. They are trying to find their new normal like any other family with the arrival of a baby, but how can this be normal? This new, innocent and helpless life that you love more than you ever thought possible has to go through this terrible ordeal, an ordeal you can’t even imagine as an adult, even still you’d go through it 100 times over if it meant they didn’t have to go through it at all.
So while they may be trying to live as normal a life as possible and staying strong for their little one (and siblings if they have them) I’m telling you that on the inside, they are falling apart and drowning in worry.
Here are a few tips on how you can help:
• Listen, listen, listen… there nothing like having someone who you know cares and there to off load your worries to
• On the other hand, they might not want to talk about it, they might want to talk about anything else to try and forget…just for a little while. So maybe just tell them that if they want to talk, you’re there for them, and if not – that’s ok too. Let them take the lead
• Offer to lessen their load, give their house a clean, fold some laundry, take dirty laundry away with You, make them a batch load of meals, go shopping for them or arrange an online delivery.
• Constantly remind them that they are in your thoughts and prayers. Little text messages can do a lot to lift their spirits from well meaning friends, even if you don’t know what to say a simple “I’m thinking of you” can help!
• Tell them that they are doing amazing! That they are strong! Coz they won’t feel it on the inside
• Acknowledge their exhaustion, mentally, emotionally and physically. Acknowledge that they’re going through hell and back again. Acknowledge that it’s crap. Acknowledge it’s unfair. Sometimes you just want someone to level with you and acknowledge how you really feel. It’s all well and good being positive, there’s definitely a place for it… but if it’s all you ever get, it can down play very real negative feelings. It’s ok not to be ok.
• And once it’s over. It’s not over. Ok, the worst is over, but the trauma of surgery is not something you just get over. It haunts you. It breaks you and you have to heal too. Many parents can experience as massive low once all the adrenaline has ran out, I know we did. So still be there for them, don’t stop doing all of the above because they are healing the same on the inside as their little one is on the outside
This is put together through my own experiences and everyone deals with things differently. If you have further suggestions to add to this list – let me know!
Cranio Shaped Mama 