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!

Starting again

So, I'm going to try to blog on a more regular basis. There are two main reasons why I think I should do this. 1. It's therapeutic. Life is hard, confusing, and frustrating right now. Blogging will hopefully allow me to get some of my frustration out, and hopefully it will help me look for the positive things in my day. 2. To bring awareness to a rare illness that desperately needs more research and more informed medical professionals. 

My goal for each blog is to share a bit of what is going on in our lives, share a Scripture or song that has touched my heart in some way or speaks to my feelings, and share a positive note from the day.

I hope you'll follow along on this journey. It's not where I ever expected to go with this blog, but hopefully it will benefit someone.

God bless and see you soon!

I'll leave you with this photo I took earlier today of three of my kiddos playing in the water. They had a blast! 😀

Courage

Today began full of EDS pain and gastroparesis nausea complicated by low blood sugar. It was NOT a good morning. My caring husband made me breakfast, and struggled with the desire to stay home to take care of me and the need to go to work. There were tears and stress and even a bag in case my breakfast wouldn't stay down. We decided he should go to work and hope that I would feel better soon. Well, I'm typing this at 10:18AM, and I'm feeling much better.

To go back a little, I got a pretty big surprise earlier this week. A dear friend told me that when they saw me on Sunday morning, they saw anger. I haven't been told that before, but he was right. I.AM.ANGRY! On Sunday I was angry that I was stuck in a wheelchair. I'm angry that I always have to use some sort of walking device to get around. Angry that I am not the mom I always dreamed of being. Angry that I'm not the wife I want to be or that my sweet husband deserves. Then I realized from where all this anger comes.  This anger I have, is deep seeded in fear. Fear that I am not the mother my children deserve. Fear that I am not the wife my husband deserves.  Fear that I am not doing enough, being enough, strong enough...

I have fear of the future and for what it holds. How much sicker will I become? How much more disabled? 

But the fear that causes the most anger, is the uncertainty of my children's future. Each of my children has a 50% of having EDS and one of them has already been diagnosed. I wouldn't trade any of my children or choose not to have them, but it breaks my heart to think they could end up chronically ill. As I was explaining to my children this morning that I wasn't contagious, it's my EDS acting up; my little girl looked at me and asked with fear making her voice tremble, "Is that going to happen to me too?" 

It is my job to teach her how to have courage and faith in the One who DOES see the big picture even though we don't. So I hugged her and held her and told her that I get scared too. 

You see during all the yuckiness this morning, I was on Facebook. On my page I found several reminders to have faith and hope, and above all to not be afraid! I was able to share some of these with her.

This is the video I showed her. http://m.wimp.com/fear-dance-routine-magic-costume-mahomet-seymour/ I don't know how much of this video she'll remember, but even if all she remembers is living in fear is darkness and living in faith with hope and courage brings light; I'll take it!

There is even more that was shared with me this morning, reminding me to not be afraid and thank God for the storm, because our storms (and how we handle them) may be blessing others. God has been sending me a message today, that I wanted to share with you. "Be not afraid!"

https://m.youtube.com/watch?v=edfwnITsqT0&feature=youtu.be

Ehlers-Danlos Syndrome

Ehlers-Danlos Syndrome (EDS) is why my body hates me. For years my body has given me fits of different kinds, but it all came to a head six years ago. For six years I have been chronically ill and no one could figure out why. They ruled out all kinds of disorders (MS, Lupus, epilepsy, and more), and then the doctors would send me on my way. My PCP fought for me, but didn't know who else to have me see. By the grace of God, a friend of mine mentioned a doctor who was able to help her when she was bedridden. We decided to give this new doctor a try. This doctor practices family medicine but also functional medicine. That was my first exposure to functional medicine, and although the diet didn't heal me as it has others, it has helped me identify foods that body doesn't handle well.

Early in 2015 our oldest was diagnosed with a Chiari malformation that was restricting the cerebral spinal fluid from getting to his brain and was pressing on his brain stem. Scary stuff! He had brain surgery in July and is doing much better. It was through my desire to learn more about his condition and receive support from other parents that I first learned about EDS. 

In September, a fellow mom in the Facebook support group posted a LOT of links about EDS. That day I decided that I should finally read about this disorder. I was shocked and amazed! I had numerous symptoms, so many that after sharing the links with my hubby we decided to share the information with my doctor. (The one who is a family doctor who studies functional medicine.) Because she believes in continuing to learn and putting her patients first, we were sure she would read the material. We were right! She told us at my visit that she was amazed at how many of the symptoms I have. She did the proper exams (the Brighton scale and the stretchy skin test) and gave me the clinical diagnosis of Hypermobile EDS. 

WHAT DOES THAT MEAN????

EDS is a connective tissue disorder that effects the collagen in the body. Collagen is found in every part of our bodies except the nerves. It is the glue that holds everything together. There are different types of EDS and depending on which kind you have depends on which part/s of your body are more severely effected. (I plan to address the other types in a future post.) For the hypermobile type, the joints are very flexible causing the joints to subluxate and dislocate on a daily basis (for many people, multiple times a day). It also causes pain in the joints as well as the muscles that are having to help hold our joints in place. We can use physical therapy to strengthen our muscles, but if the wrong kinds of exercises are done, or in the wrong order, it can cause injury (we injure more easily too) and cause even more problems. So finding a PT who knows about connective tissue disorders and hypermobility is a must. It's also important to find a PT who understands chronic fatigue (which we often have since our joints and muscles tire easily from having to work so hard just to walk, write, type, cook,  do all kinds of typical activities). If we work our bodies too hard it can land us in bed for days or cause joint injury. 

There are many health issues that are associated with EDS, but more research needs to be done to prove that EDS is a cause. It makes sense though because connective tissue is found throughout the body, every body system can be affected. People with Hypermobile EDS may also have Postural Orthostatic Tachycardia Syndrome (POTS), mitro valve issues with the heart, gastroparesis (slow gastric emptying) IBS, very sensitive skin and stretchy skin that is difficult to suture, mast cell activation disease, vision issues, dysautonomia (which causes all kinds of other issues) Chiari malformation, cervical instability and more. It can be very difficult to be diagnosed with these associated issues because education about EDS typically begins and ends with a short paragraph in a Med school textbook. Because it is deemed a "rare disorder", most doctors don't even think of it as a possibility and there are very few specialists who know much about it as well. Insurance companies can be difficult to work with too in getting the proper tests completed. So, many people with EDS (EDSers) have to travel to be seen by doctors who actually know about the condition and understand the MANY, MANY underlying factors that go into treating someone with Ehlers-Danlos. 

It makes daily life a chore sometimes. Something as simple as getting out of bed, eating a meal, taking a shower, or going to sleep can be significantly difficult. My energy level and pain levels change throughout the day. I may seem fine and I'm able to go up and down the stairs and cook and clean perfectly well in the morning, but in the afternoon I can barely move, or my body makes me sick to my stomach or so tired that I have no choice but to lie down. Lying down is a pain too, literally. If I sleep in the wrong position or my bed or pillow don't give me the proper support, or if my joints are just hurting, lying down can cause a tremendous amount of pain; making it nearly impossible to rest or sleep. 

Why am I telling you all this? Well, it's not for attention or sympathy. It's for education. EDS is thought of as a rare disease, but the hypermobile type is likely not rare but more likely underdiagnosed. The more people that find out they have this disorder and get diagnosed, the better chance for more research we have. Not everyone ends up disabled or feeling ill all the time. There are different severities, and it hits people at different ages. The treatments that are available, aren't that great. The medications they offer are very strong and for some people cause side effects that are just as bad as the pain they have. And the government is trying to limit our ability to even get those medications anymore. Physical therapy and occupational therapy are great avenues to explore, but they don't work for everyone. And like I stated earlier, you have to have the right kind of physical therapy or else you could get hurt. This is a genetic disorder. Without question each of my children could have it. I want to give my children the opportunity to have a better and brighter future. Getting them diagnosed early on is one good thing that I can give them, but it would be even better if I could give them better treatments and possibly even a cure! 

For more information about EDS go to http://ednf.org/node/11

When my neck is hurting a lot or too weak to hold my head up, I wear a neck brace to relieve my muscles and joints for a bit. I'm not a fan, so I try to keep up with the little things that help me feel "normal" even when I'm not feeling "normal" at all. 

About disappointment

Disappointment is a good word to describe my trial with the elimination diet. I know others have had great success with the diet and felt their bodies "reboot" and become like new. Well, that's not the result I had. I do feel better, I have more energy and can walk better. I rarely have to use my braces and it has been months since I needed the wheelchair. Matter of fact, I rarely use a motorized cart when grocery shopping (although that is due to my children's needs and not just mine). Even though these are WONDERFUL benefits, I'm still not able to do the things I really want to do.

I still want to be able to take my kids to the park and play with them. I'd love to be able to run with them and work in the garden even though it's hot outside. I want to go on nature hikes, roller skate, ride bikes, etcetera. It's difficult for me to not feel disappointed at another failure in both finding a diagnosis and getting my body to where it should be for a 36 year old mom. I'm working on being happy and feeling blessed with the results I did receive, but it is definitely a struggle for me. I feel like I'm letting my kids down and my husband down. 

For this reason (and some other trials our family currently has) our Scripture to learn this summer gives hope and promise for renewal.

Isaiah 40:31

“But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.”

-Inspired Version