Saturday, June 18, 2016

Dads who are care givers

So, when you read the title of today's blog you probably thought, all dads are care givers, I don't get it. Well, all dads can be care givers. They can bandage boo-boos, read stories, and sing lullabies; but today I'm referring to dads who have children with special needs. The term care giver takes on a different and exceptional meaning to these dads and their families.

Today is Fathers' Day (it's 12:08AM), and I've been thinking about how I want to honor my husband today. I want to make sure I paint a picture that can help others understand and appreciate everything he does, and what so many other dads like him do each day. 

We have a unique family. Not only do all four of our children have unique challenges, but I am physically disabled too. So there is this tremendous pressure put on my dear husband to not only be the sole bread winner for our family, but to be the rock, the strength, the provider of positive thinking, and the burden to stay healthy. It is on his shoulders to remember things and keep it all together, because it's difficult to do that when you have a chronic illness or special needs. He's the one that when we have another doctor's appointment for one of our children, must time right back into work and continue with his day like nothing happened at all, no matter the news we just heard. I can leave and begin to cry or yell as soon we begin driving home, but he has to step right back into talking with people and helping them with there presentations and pretend like everything is fine, even when it isn't. I can't stand it when people tell him how strong he is for not showing emotion during these difficult times, and not letting it get to him. As a care giver, as a parent, it does get to him, and he should be allowed the time to cry, and yell, and mourn. But, there is just so much pressure put on these dads, that they often don't get the chance to let it all out.

Throughout our years together, my husband has shown time and time again what it means to be an excellent dad and caregiver to our children and to me. When our BG was little and just beginning  occupational therapy, it was her kind hearted daddy who could see her struggle with the information her body was sensing and would hold her tightly in his arms until her brain could calm down again. He would explain to family, calmly, that she couldn't always wear the clothes picked out the night before, and may even need to try on many different outfits before finding one that felt right so we could leave for church. He would remind others not to demand hugs or touch her without warning, because she was so very sensitive to even the slightest touch. 

 When our oldest needed brain surgery, he took the time to help find people to watch our other kiddos and helped make sure that SuperBoy always had one of us with him in the hospital. He also made sure that I was able to eat at the hospital and at home, even with my special diet. This dear daddy went with the physical therapist and SuperBoy to make sure he could make it up and down the stairs before we brought him home, and made him a bed in the living room until it was safe for Him to sleep in his loft bed again.

This daddy has met me in the emergency department time and again to check on our PG because of an asthma flare-up, continued falling, and other unusual health concerns. He's rushed her there himself because she couldn't stop moving and she was desperate and tired and crying. He's had to pick her up from a fall or carry her up stairs to bed countless times. He makes arrangements and takes precautions so that she can do activities and go on field trips and excursions and doesn't have to stay behind. He makes sure she gets to be a kid and not just a bunch of illnesses piled into one little body.

He reminds our youngest that no matter what, his daddy loves him. Even when he draws on the wall, throws a tantrum, or wets his pants; his daddy loves him. Even when Daddy can't go to the ultrasound or the visit with the kidney doctor, his daddy loves him and wishes he could be there. 

My husband, the care giver, is willing to give up time when he would rather be watching the Royals play or listening to Hamilton to help me get the kids ready for bed because PG has been falling a lot and needs someone with her all the time; or because my knee just dislocated and I can't walk. He gives up time with the guys, and instead takes the time with our oldest guy so they can build a strong relationship of trust and respect. So he can help our teen to grow into a self-sufficient, responsible young man who can make his dreams a reality. He takes the time to make sure each of our children knows how wonderful they are by spending one-on-one time with them and getting to know each of their likes and dislikes. He takes the time to show them that no matter what their struggles are, they can still dream and reach for the stars even from a wheelchair.

This doesn't even address all the time and energy he puts into taking care of a wife whose body is so unpredictable it can go from happy and enjoying life one moment to severe pain and fatigue, or even stoke-like from a rise in body temperature the next. There are all the times when he has to carry me up or down the stairs, wrestle with my wheelchair, help me put braces on, rub my spasming muscles, or simply hold me while I cry. 

All of these things he does after working a full time job, not knowing if he'll need to come home and have to fix dinner because his disabled wife didn't have the energy to do it, or clean up a mess the kids made, or wash a load of laundry; when he would really just like to sit down and chill. It can be difficult and nearly impossible to find a way to relax with the loud yelps and jerks of Tourette, the inflexible nature of OCD causing someone to pace or have an anxiety attack, the crying and meltdowns from overloaded senses, and the rambunctiousness of a preschooler who is almost always mischievous and gets himself hurt and bruised easily; and yet this dad sticks with it. He helps with potty training and showers, making meals and grocery shopping, planning medical trips and one-on-one time with each of our children. He is an amazing dad who puts more love and compassion into one day than many people have to put into a month. He doesn't to it all with a smile, that would be too much to ask of anyone; but he does it because he loves our family and wants what is best for each of us. 

So, the next time you see a dad of a special and unique family similar to ours; instead of telling him how strong he is, tell him he's a good dad and that it's okay to take some time off for himself. It's okay to cry and mourn and become angry for his child/children/wife who can't do all the thing he wants for them. It's okay to be strong in the eyes of the world, but it's equally okay to need help and not do it all yourself. The strength these dads have goes far beyond what society sees, so tell them you appreciate them for the things they do that you know nothing about. Give them a hearty hand shake or even a hug. 

So, to my husband, I love you. I appreciate you. I couldn't walk this road without you, and I don't want to walk it without you. 

 To my husband, to my dad, and all the other dads out there today, thank you for loving your children. Happy Fathers' Day!



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