What is patience?
“The quality of being patient, as
the bearing of provocation,
annoyance, misfortune, or pain,
without complaint, loss of temper,
irritation, or the like.”
My Momma use to tell me I had the
patience of a saint… I never really knew
what she meant, but I sure do now….
I have had many lessons in patience. I was born graced with more patience than most people I know. Also like most people I know, I find as I get older my patience gets a little thinner. I have had to practice a lot of patience in my life. I have to admit though, I often feel that I have had more than my fair share of the testing of my patience. I can say for certain that I have grown and learned many lessons from practicing being patient. One of my favorite sayings is, “The longer you wait the better it is.” I often use this when speaking to others about patience. I know in my life, the things I have really longed for, really prayed for and anxiously awaited for in anticipation… Those are the things that I really appreciated, really enjoyed and really cherished. These past few months I have seen a glimpse of a few of those things I had been patient for… Blue, our Seizure Service Dog’s name being chosen and at last a dream came true was put in motion.
A dear friend who I met on Craigslist, of all places, gave a wonderful miraculous gift of $1,000 to get Blue’s deposit paid so she could start training! When I think back of how we met and how we became closer than most people I have in my life…
I just have to chuckle and just shake my head in awe of it all. It was after all during the breast cancer scare while pregnant with Abigail that we met. We actually met for the first time in the hospital parking lot. She had responded to an ad I placed on craigslist looking to buy a baby swing. She had the very swing I wanted and also gave me lots of
burping clothes, a bouncy seat, bibs and other items as well. It was a dream come true, the very “cradle swing” I had oohhed and aahhed over! Over the next few weeks we chatted on facebook and became online friends. Eventually, we exchanged phone numbers and became the greatest “night owl” phone friends ever! I was blessed to have her family
come for a visit recently. Indeed, this was only the second time we actually “saw” each other. Over that four year period we had formed a friendship that was stronger than most of my lifelong friendships. It was as if we had known each other our whole lives… Our entire families gelled together like long lost cousins. It was amazing, to look back and know that this one of a kind friendship has to be a “God thing!”
Just before her visit Brynn had a seizure that caused him to fall. He injured his knee so I took him to the ER. The ER referred him to an orthopedic surgeon who said he needed an MRI. After a week of trying to figure out how to do this with the VNS, it was determined that he can only have a MRI at Children’s Hospital. The VNS has to be turned off for any MRI. His Daddy took him to Children’s to see another Orthopedic Surgeon who took better X-Rays and determined that he does have a torn ligament and his kneecap is also out
of place. He has it braced now and does daily excersises to try to get the kneecap back where it belongs. If it doesn’t he will have to have surgery. The week Prior to her visit and the week of her visit the boys had their PET scans and MRI test done. Brett developed Petechiae a day or two after each test was done only on his forearms. I couldn’t get answers from the Hospital nurses or Radiology staff and took him to two Doctors seeking answers.
We never did get a definitive answer as to why, except that it may be his med combo causing his capillaries to be weakened and make him prone to bruising. The boys will both go soon for a 5-7 day EMU stay. We hope that we will get some answers from these new test at the new hospital. Brynn has done relatively well the past several months. He has experienced a seizure decline over all, and when he does have them they are generally less dramatic. He is also somewhat stable cognitively, compared to how he has been in the past. We
hope that this will continue! Brett has had a lot less Complex Partial Seizures that spread into his Temporal Lobe causing the extreme euphoria and fear. It is much easier to deal with the seizures when they are not scary for everyone else in the house. We have seen a decrease in daytime seizures overall, but they still tend to cluster when they do appear in
multiples of 2-4 a day. His visual auras/Simple Partials are persistent and no longer seem to respond to the Topamax. We did initially try to wean the Topamax due to Heat Intolerance, but quickly discovered that it caused his vision to become so poor with flipping images/double vision he couldn’t really
see at all. After increasing it back, he never fully regained control of that seizure type again for more than a few hours at a time. Just this week we finally were blessed with the amazing gift of love that we have wanted for two years now! The SAMi Monitors are here!
They were given to the boys through the Chelsea Hutshison Foundation. I donated what we had left of the money raised with bracelet sales. I hope to be able to donate more soon. It is a wonderful foundation that is helping so many children with seizure disorders! I knew within two
hours of the SAMi’s being on that this is a miracle, when it actually alarmed to a Tonic Seizure Brynn had while taking a nap. Such a wonderful feeling of peace, knowing that the SAMi’s are watching the boys too while they sleep! Now, back to that patience thing…
Most people when talking about patience think it just means waiting. It’s not really about just
waiting, it is waiting while not exhibiting complaining and showing your frustration with not having what you want NOW. I know full well what Momma was talking about at this point in my life. It is seldom easy to wait for something that you need at this moment and not
get frustrated and complain. Especially when it is something that your child needs, like answers to medical problems or just a matter of being set free from something that is hurting them. In this seizure journey, my patience has been tested almost daily. I recently was thinking about patience and Momma saying I had the patience of a saint. I think I too had fallen prey to the
overwhelming desire to complain about how unfair things are in my life. How unfair it is that the boys have Epilepsy, that medications are not making them seizure free… and that is when I realized that I had become like the children in the wilderness… bickering and complaining… It’s very difficult to watch your child have seizures and practice being patient. All too easy to become frustrated with
not getting answers and the solutions to make these seizures stop. It was then that I realized, it’s not just waiting… It’s waiting knowing that it may never come. It’s waiting, believing and hoping that it will come… and knowing that our Father is in control and at the right time, perhaps it too will come! Until then, I will keep practicing being patient and like Abigail… Just keep smiling and singing joyfully, knowing that it will come! When I feel the temptation to become inpatient, I think about the children of Israel. They were right there and bickered and complained so much they just stretched out their time waiting… I am amazed when I think about how far we have come. A year ago, I never would have thought we would have a Seizure Service Dog in training and Two SAMi Monitors! GOD IS GOOD!
Please find is at Facebook.com/EpilepsyWarriorBoys to help being Blue home to help Brynn and Brett fight this Epilepsy Battle… We do not own or claim to own the song used. The song is Blue Does By: Blue October. It is the inspiration that gave Blue her name! Please help being Blue home!!!! Donations cane be made here:
Or for tax exempt donations through our sponsor, NSDF, a 501(c)3 non-profit Here:
*Please be sure to note that the donation is for the “Epilepsy Warrior Boys” and let us know you donated!
Hebrews 6:11-12 And we desire each one of you to show the same earnestness to have the full assurance of hope until the end, so that you may not be sluggish, but imitators of those who through faith and patience inherit the promises.