New mums on the whole can find it difficult to maneuver around all the sleepless nights, constant feeding an ever-growing and moving little bundles of joy they have in their lives! Now imagine sleepless nights, feeding a baby, trying to stick to guidelines getting baby out and about to receive vitamin D, and making your baby little friends while in constant pain. Imagine trying to manage pain relief so it doesn’t affect the baby through your milk, imagine feeding your baby with dislocated joints and trying to stay calm so your milk isn’t affected! I’m a new mum with Ehlers-Danlos syndrome (EDS), and it is so hard!
Not only is it hard to just care for this beautiful baby boy because of the energy it takes, but did you know that people with EDS have a 50 percent chance of passing their condition to their baby? I had this perfect baby in my arms and looking down I had to think that I may have passed him my faulty genes that could lead to a life of pain. At a week old he had the tests and they think he is OK – but just imagine, I am not alone in this. So many parents with chronic illnesses not only have to care for their babies through their illness, but also live with the realization that their condition could be passed to their precious little ones!
Now how to help these new mums! Here are a few helpful tips from a mum who is currently going through it all:
1. Keep inviting them places and don’t take things to heart. Due to chronic illness I have lost quite a few friends from constantly canceling plans due to pain or a bad night. With a baby, this is 10 times worse! And it’s all pot luck. I might cancel on friend A 10 times and be well for friend B 10 times. Don’t take it to heart! They have got me on my good days and if I had been ill, I would have cancelled them too. I’d love to see everyone, but energy is low with a new baby – especially while dealing with a chronic condition.
2. If they say they can’t do an activity, plan a new one! I would have loved it if when I said I was too sick to go for a walk, friends rearranged with a coffee rather than just saying “OK.” Don’t be defeatist. If your friend has a chronic illness and a baby, they may be so tired they seem disinterested, but if you arrange an activity they can manage, getting out the house and seeing you would be a great source of emotional support.
3. Don’t be upset if they ignore messages. Lots of chronic illnesses can cause brain fog, and even when it doesn’t, these new mums still have baby brain. Don’t stop talking to a friend because they read your messages and don’t reply. It is an honest mistake and they need your support, not made to feel guilty for something they aren’t able to control.
4. Provide them with meals. We had friends who came over with food the first week we were home and it was great. We got to sit on the sofa as a family and enjoy food with the TV on without having to worry about going to the shop or getting anything prepared.
5. Let them know you are there. When I am having a day of dislocations, I’m lucky I have my mum and husband to carry the baby about, but some people don’t have that support. It would be wonderful if they knew they had friends that were happy to take over on days they are unable to carry their baby and need that extra support.
6. Don’t come over unannounced, it’s hard enough being a new mum without having to play host to others. You may think holding a new baby while the parent can get things done is helpful, but some new moms would prefer the opposite. I would love people to come over and allow me to bond with the baby while they tidy, rather than holding my new baby so I can do the washing.
7. Look into support groups they could be a part of, or any herbal remedies for breastfeeding mamas. Before I had my baby I didn’t think about this at all. If someone had reminded or suggested to me that other people were going through the same thing or to try different thing that could help – I’d have definitely followed the links and joined groups to get the comfort from other mums in the same situation. I would try anything once to see if it stopped the pain!
8. If you know they are in hospital, offer to bring snacks, clothes, etc., without taking over! I have so much fear when I’m in hospital and want my baby more than ever. If I ask a friend to bring me some chocolate or something, they will offer to help by taking the baby – so I end up not asking for help. If you go to see a friend in the hospital, take snacks and chat. Only take the baby if offered! It seems so rude if someone comes to help and asks for the baby, then being told “no.” We are in pain, but we are still mums first and want to bond with our little ones as much as possible!
9. Just be there and don’t forget about them. You guys are all we have. Don’t think we are fading away. We don’t want to be, we are just worn down and need you more than ever. Love and support are the most important things anyone with chronic illness and a baby needs.
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