I don’t think there will be a parent, especially a special needs parent, who hasn’t heard the phrase “I don’t know how you do it!”. I have. When I was pregnant with our triplets, although then it was generally “oh no, I hope you’ve lots of help!” or other negative comments. I told a lady in marks and spencers I was having triplets once and she literally just stood with her mouth wide open and then walked away in shock. Charming.
So…how do I do it? Here are a few ways.
- It takes a village
It is so true what they say about it taking a village. When the babies were born, they spent their first few weeks in a baby unit because they were premature. The nurses, doctors and healthcare assistants became our support since family members (except their Nannys!) weren’t allowed in. As the years have gone on, I got paid support in the form of a “personal assistant” which is a title unworthy of what Natasha and then Debbie did for us. They are both still valued friends. The kids also have a wide family who loves them and my Mum in particular is with us most days to help, especially with the limitations imposed by my MS.
For us, the routine has been the key from day one. The amazing nurses in the baby unit had the babies on four hourly feeds before we brought them home in an attempt to help us cope. We stuck to that for most of the time we were bottle feeding (breast was NOT best for us) and it worked brilliantly. Even now, when they are nearly seven, we keep them in a pretty set routine. It has changed as the kids' needs have, but it works for us all to have a routine. I also write things down, especially Jacob’s epilepsy, so I have a “grab and go” pack ready in case routine breaks and he needs to be transferred to the hospital.
- I have fewer friends
I remember a time when travelling in a car would have caused Jacob to have a seizure which inevitably needed his rescue medication then possibly an ambulance. Nobody knew why it happened because he wasn’t photosensitive! I wasn’t happy to drive with the kids alone but also wasn’t willing to be away from home by myself because Jacob was just so unwell during that time of his life. I tried to explain this to a group of really cherished friends at one stage and for whatever reason, it was taken in a way I’d not intended at all. Nobody in the situation had any ill intent, but for reasons I still don’t understand, we no longer speak. You will likely lose friends you never thought you would in your journey as a special needs parent, but you’ll also meet so many amazing people.
- Me time
I’m in that slightly unbelievable period when the kids are out at school and I have time to myself again during the day! At first, I was quite lost about what to do and felt on constant “alert” in case Jacob took unwell. He has settled into his new class so well though, and with his epilepsy being much more stable I am taking more time to do things I enjoy. My amazing cousin has loaned me her beautiful horse and I am meeting new people through him and enjoying riding again whenever my health allows.
The truth is, you’ll never know how someone else does it because no matter how close you may be, you don’t live their lives. Nobody knows what goes on behind closed doors. So I try to be understanding of others and learn from my mistakes (there have been a LOT!). Mostly though, I just keep moving forwards with my beautiful family!