My mind has been so overwhelmed with so much lately.
As Ceci’s mom and biggest medical caretaker, my anxiety of this upcoming surgery has me feeling as though I am holding on so tightly for the end of the tunnel and the light that our family desperately needs to see. Everything is feeling as though it’s too heavy……. And I can’t shake it.
I’m the first person to push positivity out there because of how strong my faith is in our lord, but lately I feel as though my heart is questioning “Why”??? Why does anyone have to bear these scars? Why does it have to be my child? A child of such positivity and light. A child that has had to be much stronger than most adults will ever have to be. A child that knows more in her short 14 years, than even I did at her age. Why???
We are one week away from our next hour and a half drive away from home and preparing for Ceci’s 56th major surgery ☹ No mother should ever have to type out 56th surgery for their child.
We are hoping that we can stay at the Family House in Peoria on Monday evening. Ceci has to be checked into the hospital at 5am on Tuesday morning, so it would be very rough on us both to have to wake before 3am on Tuesday and prepare for the drive.
With the Family House, we are not allowed to call and check the availability of a room until the morning of the day we want to arrive. So early Monday morning at 5am we will call and pray they have a room available. It is much cheaper than paying for a hotel room, but the rooms fill quickly. I believe the last time we stayed it was between $30-$40 a night.
They try to keep families together in the family house but with only 20 rooms available and so many kiddos fighting at Children’s Hospital of Illinois in Peoria, it’s hard to get in.
The good news is that they are currently building a Ronald McDonald house in Peoria that will feature 22 suites for families. Talking with so many other parents at the hospital, it is greatly needed. We are grateful that Ronald McDonald Charities saw the need for a new house for our home away from home.
My last day of work will be this Thursday and then I am off on unpaid leave until Ceci is well enough for me to come back. Of course, this is a financial hardship for our family, but our sweet girl needs me by her side for the biggest surgery she has had. We are struggling because Dad has been off work for almost a month with no pay on top of all this, and he started a new position today. So, with such short notice, we do not think he will be able to take the day off to be with us in Peoria. This is hard for us all.
It is going to be a very long 4-6 hours for our family.
We are trying to get prepared the best that we can for Ceci and my absence at the house and of course her return once she’s discharged.
Today and tomorrow after work, I will be scrubbing the heck out of her room and her bathroom to prepare for her return. I need to also take inventory of all her medical supplies that we have and stock everything up. I will be washing all her blankets as well and make sure we have lots of sheets, pillowcases and blankets ready in her room. It sounds like she is going to be spending a lot of time in her bed.
I also bought her a medical bed table yesterday that she can use while she is in bed to use her ipad to communicate with friends and family while she is resting. I’m making a trip to Walgreens today to buy another round of the supplies she needs to care for her side that still has not healed up ☹. I also have to register all the kids for school on Friday, since they go back on August 2nd and I will begin packing Ceci and my things for our hospital stay.
I have not had a chance to do any back to school clothing shopping for our 3 kiddos or stock the cabinets for our departure, but I think we can manage. We will have to take it day by day and try to keep our heads above the water. Like I said everything feels so heavy right now. I feel like there’s not enough time for anything.
I want to say thank you to our Friend Brad and his family. He has reached out to help us do school supply shopping for the kids in the midst of all this craziness. Brad I appreciate it very much! This is a very big help for our family. I do not think with all the craziness going on in my brain right now, that I could organize the thought of 3 lists before August 2nd. It feels like summer break just started and they head back in less than 2 weeks.
Ceci is enjoying her days at home and time with her brothers. We have been getting into the swimming pool almost everyday and she loves it 😊 I think this will be something she misses the most. She said the sun feel great and the PT that I am able to do with her in the pool has been helping with all her pains.
She has been getting nice stretching in her legs and back and since she is not able to stand in her chair anymore until we can get it repaired, the water has allowed me to put weight on her feet allowing her to stand in the water.
It is wonderful for her to get some type of weight baring on her legs, but the water helps with how much preventing any further leg fractures from her osteoporosis. It has been almost 3 months since her last fracture, and we hope we can make it years again before the next.
Another joy that Ceci has found is playing basketball in our driveway. She and her little brother got a hoop for their birthdays in May, and she loves it! She really enjoys the sport and hopes one day that our area will get a basketball youth team that she can play on. Finding these recreational things that she enjoys brings me so much happiness. It’s hard for us to find things that she can get physical fitness doing, and her doctors want her to do more when she’s healthy enough to do it, but it’s always a search.
She has voiced that she would like a basketball wheelchair for Christmas, so we have begun looking into resources for this as well.
We found a wonderful organization called – The Challenged Athletes Foundation. They encourage kiddos and adults with disabilities to be athletic and from what I have read they are amazing! They also offer opportunities to apply for Grants for these Categories:
CAF offers grant opportunities in four different grant categories.
• Travel/Competition Expenses
• Coaching/Training Expenses
• Equipment Expenses (once every 3 years if over 18 years old/ once every two years if under 18)
• Athletic Prosthetics
The applications open in September of this year and then Grants are handed out in Spring of next year. We plan to apply for a grant for equipment and ask for help with a Basketball chair. I will keep you all updated about this as we apply and how the process goes. It would be so wonderful if Ceci gets picked for one of the grants. She would get so much use out of it and by then her back should be healed up nicely so she would be able to sit up on her own without assistance.
Well I better get going for now.
Thank you, dear friends, for continuing to check up on Ceci as we prepare for the next days ahead.
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Ceci is going to need many prayers for what’s ahead and we believe strongly in this power. We will post her entire journey through her 56th surgery. So, the more friends and family we have praying by our side, the better ❤
Lots of love and hugs to you all,
Alexis (mom), Cecilia Marie and our special family
~Spina Bifida Fighters and Survivor~