In the beginning, once it becomes public knowledge that you have a child who requires extra attention, you are told the following phrase in many variations, "take time for yourself". Friends, family, even the veteran special needs parents you have just befriended, essentially every person you talk to has this advice as if it were the most important bible passage ever to be referenced. If you are like me (which I think many rookie special needs parents are) you nod your head in agreement, state that of course you will, and then you go back to doing the exact opposite of the recommendation. Days, weeks, months, and maybe even in some cases, years go by before you realize that you really do need to ensure you take time for yourself. Not just an hour in the evening or a quick run to the salon for a massage or mani/pedi. Sure, those are great, but in all honesty, they are not going to leave you as refreshed, renewed, or roaring to go as they might have in the past. You really need to take time for YOU.
As a special needs parent things are different. Trust me; it is not an elite club that you should try to be a part of. While qualifying for additional state services such as insurance, therapy services, nursing, respite, etc. might sound absolutely amazing to those who aren't part of this system, I can assure you (from personal experience), this is one of those clubs that whomever is in it will embrace their position, but they wouldn't wish it on their worst enemy. The stress, worry, guilt, lack of sleep, constant daily battles with the above-mentioned perks, hospitalizations, ensuring the rest of the family doesn't fall apart, and essentially every other possible thing you can think of is enhanced tenfold and it makes functioning on a daily basis much more daunting. It is not to say being a parent in general is not exhausting or full of crazy emotions and tasks, it is just, this is different. (I can say that with certainty as I parented two 100% healthy children and one with a "mild" heart defect prior to the birth of Sonzee Bear).
I recently received a message from another mother of a special needs child. I have used this mother's guidance and advice literally as my bible since Sonzee was diagnosed. She has other children, she has experienced more than I have, she is a person to be trusted, let us just say, she knows her stuff. What she told me has been repeating in my mind since I received the message. She mentioned that I need to make sure I take time for myself to be the best mom I can be. She said if she could do things differently from the start that would be an area of focus for her. Respite. This message could not have come at a more perfect time as I have been feeling drained and while things are at their calmest in terms of Sonzee, I have been essentially running a special needs mom marathon since this little girl has been born. I have referenced marathons before, they require a lot of preparation, preparation I did not have.
Caring for Sonzee on a daily basis requires many alarms. Alarms to give medication, alarms to refill her formula in the feeding bag, weekly doctor appointments, and therapies, reminders to refill medications, insurance phone calls, etc. She is a lot of work. I do not say this to earn sympathy or to complain, I say it as a blanket statement. Special needs children require more. Hiring a babysitter for children in general is not easy; you have to be extra diligent these days. However, trying to find one you trust enough to not become frustrated with a nonverbal child who doesn't have control of his/her limbs, and has medical needs is no easy fete. Sure if someone qualifies for nursing you might think their family has it "easier" because the medical portion is covered, but now you are trusting someone to give your child medications appropriately and that is never easy. Our family has been extremely fortunate with our caregivers, they are practically family, however, they have lives as well.
Over the last month in various situations, the name Ryan House was mentioned. It is a facility in Phoenix that provides respite to families with a child who has a life limiting diagnosis. Respite comes in the form of a minimum of 24 hours up to 7 days at a time. I have been hesitant to look into the benefits of the services they provide because of the guilt of leaving Sonzee with others. While I worry other moms of special needs children will say they could never use this service themselves, I am starting to truly understand that if I want to function at my best not just for her, but also for all of our family, then I truly need some longer time respite. They require an initial family stay of 24-48 hours so they learn how to care for Sonzee just as we would. For future stays, the entire family is allowed to stay as well and the nursing staff will care for Sonzee while we can have a family-bonding day. Even her beloved Miss Holly can stay there as well (Isn't that exciting Miss Holly?? Since this is the first time you are hearing of this.) I just took the first step and we have a tour scheduled for tonight shortly after this post goes public. I am nervous but eager to learn more about what the Ryan House has to offer.
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