It is snowing, the temperatures are in the single digits and the Oklahoma wind is surely sweeping down the plains. It is 8 am and I am in Texas with Avagrace because she just had three surgical procedures in one day. We were supposed to be home by now. We were supposed to be home many days ago. Yet Avagrace is struggling to recover. Three procedures and 8 hours of general anesthesia were harder on her than we anticipated. She has finally come off of the vent but her stats are still troubling especially at times of pain. Most kids with intractable epilepsy have been on and off of ventilators regularly. But Avagrace's lungs/airway has always managed to be fine. It is her heart that gives out when the seizures get too tough. This is the first time we have had any "vent dependency" and the first time that she has not been able to work through the pain without hyperventilating and causing more seizures. We have been released to the Ronald McDonald house to try to avoid all of the viruses that are bringing lots of kiddos into the hospital during this particular time. Some of these viruses would reek havoc on Avagrace's immune system and post surgery struggles. But this morning we are up and traveling just a few blocks down the road to go to the hospital for outpatient care and therapies. We are working our way out of the doors and into the ice and cold. I have a mask on her face, many layers including 2 blankets over her coat and clothing. She is tired and in pain but smiling and waving good bye to everyone assuring them she will be back after her appointments. She is in her beautiful purple collapsable wheelchair that we are so grateful to be borrowing from the JDMC in Oklahoma (where she goes to PT and OT although we have not been in many months due to all of the surgeries and hospital stays).
On the back of her wheelchair is her oxygen tank, her rescue medication bag, a "diaper bag" (she hates that we call it that) but it is what it is, my purse and an extra blanket just in case. Avagrace struggles to maintain her own body temperature and in the summer she rarely sweats (this past summer was the first time she had sweat since she was an infant). I am so thankful for the Ronald McDonald house, for the family-like love they give us, for the meals, the room, the atmosphere, and right now I am especially thankful to the person who coated the sidewalks and ramps with salt. When we get to the road to cross to the parking lot to get into our car slip and slide a bit but we make it without a mama wipe-out. We make it to the car and I help Avagrace into her carseat. We remove her coat so that her straps fit her snuggly and in the way they were meant to fit and I buckle her in. I quickly put her coat on her backwards and lay her blankets on her lap. I shut her door and start the car from the passenger side so that it can warm up a bit so that the heat can start working for her in the back. I take her oxygen tank, her suction machine, and all the bags off and put them in the front passenger side seat of the car and shut the door. I wheel her chair to the trunk. I adjust the foot rest up, the arm rests up, and the handle up. I push a latch while pulling a leaver with another hand and use my shoulder to push into the back of the chair to collapse it. I lift the 40lb wheelchair into the van, push it around a bit so that it fits properly (we have a seat folded down to make room for it). I close the trunk and walk to the front to get in. When I open the door I see my darling Avacake is in a full blown Tonic Clonic Seizure, aka Grand Mal. She has enough strength to tilt her carseat that is specially made for special needs kids of her size, and that has been placed into our car by experts. She is leaning to the right and about an inch away from hitting the window with her head that is thrusting up and to the right it very tight rigid jerks. I jump out of the car and into the back seat with her, trying to keep her in as safe of a position as possible and to get her oxygen on her.
After accomplishing that I check my stopwatch app that i hit as soon as I saw she was seizing. It has already been several minutes. I talk to her, I pray out loud. I beg that this seizure will stop and that her heat and tongue will be fine. (she has bitten her tongue so badly numerous times and this makes eating very difficult. She is already having trouble eating since her surgery). As I am watching the clock and preparing to give rescue meds if we hit our time limits my phone rings. It is Brendan. He is in Oklahoma with the other kids, who also are experiencing single to teen digit temps and school has not been closed. He managed to get off work even though it was last minute due to the fact that we should have already been home in Oklahoma by now. I hit decline and start to try to unbuckle Gracie so that I can hold her and lay her back a bit to give her meds. Even if I recline our cars seat, her carseat does not recline with it. I work on getting her into the proper position all while trying desperately to protect her from getting hurt in the back seat of a van where there are many obstacles and places to hit ones head. I get her out and cradle her. I give her round one of seizure meds. A few minutes later I give her round two and this breaks the seizure but she is completely exhausted and confused. She can barely lift her head and now I must lift her 80lbs back into her carseat and try to find her neck rester pillow to reverse and put under her chin so that she will keep her head up as much as possible to keep her airway open (this is not a medical device this is just something that we have come up with to help in situations like this). I manage to get her strapped back in. I climb back into the front seat and realize that I am sweating to the point that my hair looks like I got caught in a small rain shower. I take some deep breaths and PRAISE GOD that she is still with me.
Before I leave the parking lot I call Brendan back. He answers the phone and sounds very winded. What is going on? "Nothing, just walking the kids to school." Me: "I thought that it was cancelled" Him: "Nope. Just OKC schools, not our [neighboring district]" Me: But it is in the single digits. Brendan: "Everyone is bundled up and I think I have a ride to pick them up later, I didn't want them to miss school" (it is a very short walk) Me: "You are such a good dad. Thank you for bundling them up and making that cold walk fun." We hang up and we are both off to continue the start of our day.
It is days and moments like this that inspired us to take Hope by the horns lol, and enter the NMEDA wheel chair van contest in honor of Mobility Awareness Month. Avagrace is 9, soon to be 10, then a teen, than an young lady and so on. We are moving to Colorado and I believe that God is going to continue to use her to prove that your diagnosis does not make you who you are, it is just a part of who you are. Without this van we will continue to have situations like this. We will not be able to move to Colorado. We will not be able to just go somewhere because so and so invited us to such and such and we want our children to experience more than just doctors appointments and capitol meetings.
NMEDA and their contest has given us Hope of a completely different life. So while I almost didn't enter because I know that there are so many other amazing heroes out there. So many other families that need help and hope and a wheel chair van. While I almost didn't enter because I knew people would judge us (duh it is a competition) and I struggle with caring too much about other peoples judgement.
I knew that this was the right thing to do. This is another way to raise awareness of the challenges of special needs. The reality of Epilepsy. And because fighting for my daughter and being her advocate is why God gave her to me, so I better not let doubt stop me from being the best mom that this child could ever have! And trust me all five of my kids are so beyond amazing, so supportive, so loving, so kind, so empathetic, and so incredibly proud of our unique family……well I have a lot to live up to because being their parent is not only the greatest blessing but also the most humbling and rewarding truth. I have five amazing kids that God has given to me and I do not deserve them.
So, if you haven't voted, or shared, or understood why in the world we would even need a wheelchair van when Avagrace has the ability to walk and does walk as much as we can encourage her to do, she is in her wheelchair more and more (and this is what degenerative means, she will need it more and more and more as she grows and progresses) and to keep her safe and to give her the greatest chance at the best life possible. To give her the tools that she needs to continue being the smiling child in the phlebotomy lab, and the little girl that makes friends every where she goes. We must vote and share and pray and hope that somehow, everyone in Team Avacake will take 30 seconds out of the day EVERY DAY until May 9th to vote for her to be blessed with safety, comfort, and the ability to go to Colorado and get the treatments that she needs to heal her brain and give her back her life! Say no to Hospice and say yes to Vote for Avagrace's NMEDA Hero page! #NMAM14