One of the very first things you are told as a parent of a medically fragile child with special needs, often before you even leave the hospital, is that this event has the power to either make or break your marriage. Special Needs, Stress, and Marriage are often a combination that breaks the proverbial camel’s back.
This was all I could think about when receiving the news that a friend and her husband had just this morning gone down to file divorce papers after a year of preparing for a divorce. While I don’t know the details of their decision, knowing the statistics of divorce in families with kids who have both intense health and developmental issues is high, my thoughts went to what raising a child like Parker includes.
Special Needs, Stress and Marriage
Below I’ve shared some things I’ve heard from so many parents of medically fragile children with special needs that have led to the high divorce rate within our niche.
Never ending fights with insurance companies.
Having to stay with a job you hate because of the insurance.
Giving up a good paying job you loved in order to qualify for a social safety net for your child while you live below the poverty line and you and your spouse go uninsured.
The battle for the services your child needs. It becomes as everyday as brushing your teeth, without that clean and minty feeling afterwards.
The knowledge that your child is still aspirating on stomach contents (or seizing, or running mystery fevers, or a new or strange cough, or fill in theblank.) and having your medical team just look at you and stare and nothing……and I mean nothing…….gets done to address the issue, regardless of the evidence staring them right in the damn face.
The reality that your child could die at any moment of any day. I’m not talking about the ‘we could all get hit by a bus tomorrow’ thing. I’m talking about the pressure of knowing that by tonight you child could be dead. The pressure that your child’s next breath depends on YOU. The fear of not knowing if you still remember how to use that ambu bag or know what to do when you child is chocking to death right before your eyes because he’s thrown another mucus plug and you can’t get it to move.
The PTSD. The damn PTSD. The @#$% PTSD that causes you to wake screaming in the night, reaching out to your husband just to realize that it’s his night to sleep on the floor your medically fragile child’s room to make sure that child doesn’t suffocate during the night and you not hear the alarms.
The every minute of every day alarms, beeps, hums, all sounds of a medically fragile child that put you into sensory overload yourself.
Trying to tend to the needs of your other children and give them the childhood they deserve while keeping your other child breathing.
Worry over losing your home because your paycheck can’t cover both you child’s needs and the mortgage.
Having to tell your older children that their college funds are no longer there and they will now have to earn their own way through college.
The demeaning responses that are thrown at you on the discovery that your child receives any sort of social safety net. Hello? It is my SON who receives services. Not me. Not Reed. Parker. Would you like to look my SON in the face and throw those same ugly comments at him? How about looking him in the face and telling him that, yes, as you continue to work to end any and all social services, people will die and you, Parker, will be one of them. Tough luck, dude.
Having one large portion of your state insist that you fund raise for your child’s needs, while at the same time having people within your own special needs community, along with others, mock you for ‘begging’ .
Needing to go to your parents for grocery money. Again.
Watching as birthday parties take place all around the neighborhood and once again your child wasn’t invited.
Throwing a birthday party for your child and not ONE of the children invited show up.
Realizing that your state views your child as someone not worth the tax dollars to educate. Having that same lawmaker stand up in a church meeting and bear testimony of the greatness of your child’s spirit and how it’s an honor for them to have your child attend the same ward as they do. Where is a puke bag when you need it?
Trying to survive on 20 hours of sleep a week, and knowing that you were lucky to even get that much sleep. It’s only during the hours that your body is relaxed that it can heal.
An eternally stressed body doesn’t heal, it only gets sicker.
The weight gain that comes from not being able to get out and exercise. The weight gain that comes from fueling your body via caffeine and never having the time to eat. The worry of whether you will ever feel attractive again. The embarrassment you feel from running into someone you knew before your medically fragile child with special needs days when you were still slim and had time to take a shower and enough brain cells to remember to use deodorant.
While you and your spouse never quit loving your child, the love in your marriage can get lost in the stress, worry and fear of your new normal. You don’t dare to ever contemplate kicking the bucket, because who will take care of your child THEN?
There are so many more examples I could share. And more I am sure I have yet to hear.
Reed and I have been lucky. Our marriage has been one that has grown stronger despite the odds. I’m not saying it’s all fairytale like here. (just keepin’ it real) I’m not sure if it is because we were already ‘mature’ (read: older than dirt) parents when Parker was born, or if we both know that trying to do this gig solo would surely send one or the both of us around the bend within the year.
Looking to save money on a whole food formula for the favorite tubie in your life? On of the best ways to cut down on the grocery budget is by growing vegetables for blenderized diet tube feeding. Your garden doesn't need to be elaborate. Your green thumb doesn't even have to be perfect. No back yard? No problem. A container garden can even help save money and ensure that your blenderized diet is fresh picked.
I start my garden plans by taking a good look at Parker's blenderized diet recipe. Parker's recipe calls for almost 2 cups of veggies a day. I look at what packs … [Read More...]
Parker does not like to write. Holding a pencil has got to be one of his lease favorite activities. The solution? Increasing fine motor skills and over all hand strength. A never ending quest at our house.
Note: For your convenience I’ve included Amazon affiliate links. When you shop through these links, Parker receives a small commission as a result of your purchase. Your support is very much appreciated! Thank you!
My job? To find activities that offer the ultimate fake out: a way to get the therapy in without Parker actually knowing he's involved in anything … [Read More...]
Salsa making. Having family over. Squeezing out the last bit of goodness from the backyard garden. Stuffing the freezer with fruit for Parker's blenderized diet. Working on special needs homeschooling activities. That was our weekend. How was yours?
Peppers from the garden headed to the salsa pot.
The salsa pot filled with yet another batch of the stuff. I've lost count how many batches we've made this year.
Why, yes, I did climb the tree to get those pears.
Fresh fruit in the freezer for Parker's blenderized diet.
Letter from my LDS … [Read More...]
Dehydrating bananas. It's something I've been wanting to do for a long time and never got around to it until.....well, now. While at Costco yesterday I found bananas @.49 cents a pound. They aren't organic, but that is okay. With their thick skins I don't sweat it if I purchase conventional bananas. Plus the organic ones run at least .20 cents more a pound.
For your convenience, this post contains affiliate links
(Out of all the dehydrators I've used, the Excalibur is by far the one I've loved the most. More expensive? Yes. However, it's ease of use as well as it's … [Read More...]