Trials, Praises, and Faith

 It’s been a little while since I last updated, so I thought I’d catch everyone up. Ellie’s tube has been sort of a nightmare. It keeps getting clogged. Thankfully she seems to be an expert at this point of unclogging it. One day, I didn’t think she’d get it unclogged and the dr suggested scheduling another procedure to get it replaced. I waited a few hours and by some miracle she got it unclogged. I am praying for no more issues with her tube so she can be comfortable enough to enjoy Christmas.

Another thing I just did was to apply for a handicapped parking placard for our car. Most days I have to drop Ellie off at the door of stores, park the car and then meet her there. This will be a blessing to us as we can just go into the store together. I am also looking into getting her a wheelchair. She doesn’t need it all the time , but when alot of walking is involved , it is very necessary. 

The storm was another huge fiasco. She got her formula changed and I ordered a huge shipment of her new formula and supplies to be delivered via UPS. You’d think medical supplies would have some priority over Christmas gifts, but no. Her stuff was just sitting on a truck or in a warehouse somewhere. So she ran out of some supplies and couldn’t run her feeds for about 24 hours. Finally I spoke to a nice woman at the medical delivery place and she called UPS. That night all of Ellie’s boxes arrived - torn, smashed and beat up. Thankfully, nothing inside was ruined. 

The stress of being at work and then trying to make all of these phone calls on my lunch break, sitting on hold , messaging doctors back and forth… is a lot. Which brings me to the next point. 

We are so incredibly grateful for those people who have blessed us in some way during this time. God always places them with us when we need them the most. Helping people doesn’t even have to cost money.It can be checking in, a coffee, a card.  A former coworker and dear friend dropped us off a pie and prayed over Ellie the night before Thanksgiving. Taking the time to pray over someone is the greatest gift. 

Right at the tail end of the snowstorm, I received a message from a high school classmate. There’s just something special about my graduating class. They are some of the most loving and supportive people.  She is someone I am Facebook friends with, but I haven’t seen her in years. She messaged me and said the Lord placed it on her heart to come pray over Ellie. She asked if she could stop by. Without hesitation, I said of course. The weather continued to worsen so she called instead. Over the phone she prayed with Ellie and me and then we talked for a long time. What a blessing! 

Today, my mom stopped by and dropped off a “blessing bag” from their church. To say I was surprised was an understatement. This bag was filled with little gifts, money, gift cards, and words of encouragement.  I could feel the love and care that was put into that bag. It sure brought a smile to our faces today. Here is a picture of our blessing bag. Look how big it is! 

Other people have sent us money that will be used for gas for all of our traveling! In July , Ellie will be getting surgery and I will be staying at my friends house south of Pittsburgh. I will be driving nearly 30 miles each way every day that she’s there , so it will be put aside for that.Im addition, sometime after the new year she will have to go for a central line and that will also require a hospital stay.  We are so very blessed by those around us.

 We are grateful that we haven’t been forgotten about - it’s hard with rare and chronic diseases that most people don’t understand.  Caregiver burnout is very real. Because of the nature of our relationship- I am obviously Ellie’s primary caregiver. It can be tiring , but at the same time I am blessed to be able to do it.

God continues to use this journey to strengthen my faith. I honestly do not know how people can just “wing it “ in life without full and total trust in Jesus. Many times, it’s easy to take it all for granted. But as I read the Word, I am constantly in awe of our Lord and savior. I went for many many years just trying to figure everything out by myself and not fully trusting God. Looking back , I can see my way didn’t work very well. It wasn’t until I woke up and completely turned my life over to Jesus, that things started to make sense. 

My goal this Christmas season is to dwell on the miracle of Jesus and count the many blessings that have been given to us.