Sunday, June 7, 2009

Sunday hassle

Church is starting to become a hassle for us and I hate that. I am to the point I don't even want to bother in the mornings because it is so hectic just to get us there but of course once we are there I am so glad we went. It always starts with the kids whining about going. Gage hates to have to go and Madison hates getting ready. So, I am stuck with 2 whining kids in the morning and then me trying to get us all ready to go. I still have Autumn's schedule of feeds, meds, CPT, trach care, getting her dressed while feeding the other kids, and getting Gage and myself ready. Then it's time to wake up daddy for church. He is NOT a morning person and when he does not even get home until 3-5am (depending on how his night went) it is no fun trying to get him moving and I really don't blame him for not being any help since he is so tired. Last night he was not in bed until 5am because he had to take a shower since he smelled like weed and had a guy spit all over him at work(for those who do not know he is a cop). Anyways, while he gets ready...I'm loading that heavy stroller in the car and getting Autumn all prepared to leave. There is just so much that goes into loading the car and getting all her supplies switched over and ready. So, this morning by the time we were ready to transport Autumn to the car I realized Gage still had 2 car seats in the car so I had to move his new one to the very back and take out the old one. By this time I am sweating since of course this is west texas and it's already hot by 9:30am and I've been running non-stop since 7:30am. We then have to get to church and find a parking spot that does not have a car next to it since we still have not gotten a handicap sticker and just pray no one is parked beside us when we get out of church so we don't have to squeeze all the equipment between 2 cars. Autumn does great in church but the whole time I have to keep checking her pulse ox machine because I don't want it going off in church and so I get distracted a lot. We are also trying to get use to her not having a breath rate and we get overly cautious and think we have to move her breath rate up but she actually starts satting lower with a rate then no rate at all but it's hard for us to wrap our brains on how well she's doing with none. So, during church she sat low the entire time because I kept putting her breath rate up thinking it would help when it really does not. Even last night the nurse had her sleeping with no breath rate until midnight before he decided to turn her up to 20. Okay, back to church...This morning someone already took the handicap/wheelchair area (and they weren't handicap) so that was a little frustrating but there was an empty row in the very back we were able to grab....it's just a pain because there are seats for more people on the row so we have to keep moving Autumn to let others in. I guess I will quickly learn that the world was not designed for handicap people. It was our first time to go to 2nd service so trying to push Autumn through the crowds was interesting. BTW, on the way to church I told James this would be our last time going because I was so frustrated and overwhelmed having to do it all by myself every Sunday morning. Anyways, after the service the kids had a GREAT time and Madison loves the new 5th grade class so I know we have to keep taking them and I also need that time of worship with God and others. At times I just want to keep Autumn home so we don't have to go through the hassle but then I don't think that is fair to her either because if she was not disabled I would be taking her with no questions. She also enjoys it and smiles and smiles during the singing part and then usually sleeps during the service. Oh, and this morning she dropped her blanket on the other side of her stroller so I reach over her to get it and went to sit back down and almost fell on the floor...our chairs fold up like at a movie theater and I forgot but James did catch me before I actually hit the floor....thank goodness only the couple sitting next to us saw it. ;) We then go home and unload Autumn so I can start feeding her and James runs to get us lunch. By the time it's all over I'm exhausted and don't even get my afternoon nap since James has to get rest for work. :( I know this is just one of those test to see how much we can endure and if we will give up or keep pressing on to do what is most important to our family and that is of course our faith and the importance of raising our children in church so they can learn more about our wonderful God each Sunday and take what they have learned and apply it to their lives everyday of the week. Six more days and then we get to do it all over again.....thank you Lord for the strength you give me every Sunday morning and the heart to keep pressing on for You. I know my struggles do not even compare to what others are going through but no matter how big or small you are always there to get me through. Thank you also Lord for the empty spot next to our car when we left church to make it easier to load Autumn. Faithful in the big and small.

2 comments:

Niff and Andy said...

Do you have any nurses that you would feel comfortable having with you on Sunday? One of our NICU nurses used to go to church with the boy she home cared for, but she was extremely close to the family. You might be able to at least extend the time that your Saturday night nurse is there (if you have one).

Do you have any portable supplies? Like a portable suction machine, backup battery, etc? What I usually do is load everything I can the night before we go somewhere. Typically I load the "go" bag, diaper bag, vent battery, vent, oxygen, and portable suction. So that way in the morning we just have to grab her, her feeding bag, pulse ox, and go. You could also do her trach care the night before, load the stroller, and maybe have Gage's outfit picked and layed out at night.

I think with a little time you'll get a great routine going and things won't seem quite so tiring. It's just a matter of getting it established and crossing your fingers that everything goes well. ;o)

((HUGS))

PS - Go get that handicap tag, silly!

The Durham's said...

Wow! You have my respect and my prayers. He sees and knows your faithfulness, mama, and you are an inspiration! If Autumn could speak to you now, I know she would express strong thankfulness for getting to sit in His presence, thanks to you! Her smile says it all, I'm sure:) What a beautiful heart you have, Lacy!