Only 3 days into a 9 day vacation from school and I am already exhausted from the caretaking of my disabled son. Having a cold definitely doesn’t help either, as this pesky virus can suck all the energy out of you and makes you want to sleep all day…

Unfortunately , sleep will have to wait until bedtime; I am counting down the hours until then.. Today I feel really old and the repetition of the disabled life is getting on my nerves, truth be told. On days off like this it’s an approximately a 15 hour shift that begins around 6:30am until 9:30pm. Every meal and activity of daily living follows a very specific routine in a certain order and with continual prompting and assistance for everything. This is our reality. Every special family I know has their own story: while the diagnoses and activities may differ, the exhaustion, supports required and repetition are often similar and remain the same.

While there is definite progress along the way, (and will most likely continue), Brian will always need lots of help with everything for the rest of his life. This fact is definitely not a surprise, but it’s generally not on my daily radar. I often forget about Brian’s level of need while he is in school or otherwise engaged in other activities. It’s typically during extended days off like this that I am starkly reminded of just how much patience, energy and endurance that I need to have, which is not as much as before. And of course I feel guilty about that.

I know it’s unrealistic to expect myself to have the same drive and energy that I had when Brian and I were both younger. If I were on the outside of my own situation looking in, I would absolutely concur with just how unrealistic it is, especially as my body tells me so in more recent times, Plus the mental energy that is needed . I believe I speak for many special needs parents who are thinking and feeling similar things. The years often take a toll on us and we try our best to forge ahead with courage and strength, for we really don’t have a choice, just like our children. Some days, though, are just really hard…

Giving ourselves much needed grace and compassion in these situations as special needs parents may not come naturally for most of us. It certainly doesn’t for me- I really have to work at both of these things, especially this week when Brian is off school. My pride must be broken and I must acknowledge my limitations as they are and truly accept them- that’s the hard part. I have to constantly remind myself that I am doing the best that I can in a challenging situation, especially when I don’t feel that way.

I am getting better at asking for help or taking breaks when possible. I am learning to be more realistic about my inevitable caretaking limitations in the future. I am currently trying to find additional supports for Brian and not wait until there is a crisis in the future . This is definitely a challenge for many families due to caretaker shortages across the board, but I am keeping the faith..

In the meantime, we do have some home therapy hours after school a few days a week, for which I am very grateful for. I count my blessings most of the time, but on days like today, I give myself a high five just for getting through it! And that has to be enough for today.

This tempest will inevitably pass, as it always does, once Brian and I return to our regular routines next week. In the meantime, I will try to give myself more grace and extend the same compassion to myself (especially this week) that I give my son. I know things can get better and there is always hope, no matter how difficult things are- I have seen this truth revealed time and time again in Brian’s life, as well as my own. God is faithful and more will be revealed….

Thank you for reading – until next time! 😘😘

And a very Blessed Passover and Easter to all!❤️❤️