Little did I know that when I posted the hymn challenge last Sunday and said this:
. . . that just one day later we would be in the midst of a family difficulty. One of our girls has been diagnosed with a Chiari Malformation (CM). Chiari Malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance. When the indented bony space at the lower rear of the skull is smaller than normal, the cerebellum and brainstem can be pushed downward and into the spine.
So, what does this mean for our family? First, we have to see a neurologist locally; praise God that is happening today! We also must see a neurosurgeon so that our daughter can have surgery to remove part of her skull to halt the progression of damage to her central nervous system. Recovery will be a long road from what we understand, and we are praying this all happens quickly so that she can continue on with her college plans in the Fall.
So, how have I decided to best document this? I told my husband that I need a notebook. It's going to be a long road. I want all of our questions, notes, and information in one place. We have also already been receiving beautiful prayers in e-mails, on her CaringBridge site, and via phone call. How will I keep it all together?
Well, God showed me this morning that I can use a Simple Stories album. Perfect!! I have already added paper to the notebook with questions for today's appointment. But I can also print prayers and comments on cards and add to the page protectors as encouragement. I can add photos of the journey. I can even use the page protectors to keep business cards from each physician. It will serve as the perfect spot for everything, and who knows how God may use it in the future. Here is a page I started this morning with two of the e-mails I received. Nothing fancy, just get them printed and in the page protectors. Washi tape adds a quick and super easy bit of color.
I have more to print just not time yet. What an encouragement this will be to the family to look through these!
So, don't be scared to Document the Difficult! It could be a source of encouragement too. Blessings to each of you!
27 comments:
God bless you and yours, Patter. A health notebook with all the information in it is VERY helpful, and keeping it will be a great way to be proactive and involved in a positive way, for you and yours. You are in my prayers, for sure.
This kind of scrapping is really therapeutic and useful, encouraging patient & family to take part and feel grateful for progress. Grace and peace---Jennifer in Ohio
Well done Patter! Life is full of ups and downs and I firmly believe that we need to capture all of it! I hope that your family's journey is swift and as easy as it can be! Thinking of you and your daughter! Hugs!
I'm so sorry to learn of your daughter's medical problems. I hope she will be able to join her sisters with the college plans this fall. Yes, a notebook with all the information you learn from the physicians is a must. I do that for a family member each time I take her to a doctor but I am not nearly as organized as you are. I know how well organized you are and how detailed it will be. Hugs!
So sorry for your daughter's medical problem. I will be praying for you all.
My closest friend had the surgery for the Chiari Malformation in Wisconsin. Surgery was on Monday and she was released from the hospital on Friday. She and her husband drove home to Illinois on Monday after her follow-up appt. She was back at work 6 weeks later. Its been a year now with no complications and nothing to relearn.
Patter...please know I am praying for your precious daughter and also for the rest of y’all.
Dear God...I come to you now to ask for healing for Patter’s precious child. You know the problem she’s having. I pray for her healing to be complete. Please be with her physicians, nurses, technologists, and any other person who will be attending to her needs thru this process. Also, please be close to Patter, her husband, her other two girls, the rest of their extended family and all their friends who are now on this journey with her. Watch over her and keep her safe. Wrap her in Your loving arms and hold her close. Help Patter to crawl into Your lap as she lays her head on your shoulder and gives her baby into Your safe keeping. These things I ask and thank You for in advance in the precious and holy name of Jesus....Amen.
Patter you are so creative even in the difficult times. And, what a blessing we have in knowing that we can come before the throne of an almighty God and know that He hears our plea. Praying for you during this time and please keep me updated as I pray for your daughter and your family. Blessings dear sister in Christ!
Oh gosh Patter my prayers and thoughts are with you through this difficult time. May God bless you and your family with health, courage and love.
Hugs
Keren
Patter, please know that you and your family are in our prayers. You are such an inspiration to everyone. I know that your faith will get you through this.
I'll be praying for your Patter AND your daughter! It is NEVER easy when your children have physical ailments! AND you are dependent on a doctor to come up with a solution! WHAT WOULD WE DO WITHOUT OUR ALMIGHTY GOD? HE IS ABLE!
I DO LOVE your documentation of the difficult! When I see things like this it makes me think of the Scriptures & in particular, the book of JOB! There the DIFFICULT was recorded! AND I KNOW others have been BLESSED from reading this book! :) GOD BLESS!!!!!!! PRAYING FOR YOU!!!!!!! :)
Its always so much more difficult to see our children having health issues that ourselves. I will add your daughter to my prayer list. Your notebook is a great idea to journal thru this time. One of the things I love about the journal is you can record and see how God's hand was there all the time! As you go to the doctors and they give you all the necessary information sometimes the enemy can use that to stir fear. I know you know that but just a little note of encouragement, our God is Amazing and will keep your sweet daughter and your family thru this. Proverbs 3:5 comes to mind.This scripture always encourages me to remember my God IS in control!
Oh, Patter, I am so sorry your family has a difficult time ahead! It is never easy to accept new like that but I pray that God will lead you and guide you through it all! May the doctors involved answer all of your question and may your daughter be restored to perfect health, so she can pursue her college plans in the Fall! Hugs and blessings, Sabrina
Prayers for you and your daughter (and the rest of your family), Patter. It sounds like you are taking this right on, from the start and you've found a way to document your questions, photos and encouragement from others.
How perfect to document this journey of your dear daughter, your family and God's intervention into this event that has become a part of all your lives. What a blessing from God to provide this very special neurologist. I will be praying for all of you, especially for the specific prayers you listed.
Such a great idea to journal your path. Prayers for you and your family. God bless!
Gail in Oklahoma
I am so sorry to hear about your daughter Patter! I am so grateful that you have a loving relationship with our Lord and trust in Him. I am praying for comfort and healing. Keep the faith sweet sister in Christ. Big cyber hugs coming your way!
I m so sorry to hear about your daughter. But it sounds as though she will be able to go to college if all goes well,(and it will) in the fall. I will say many prayers for her.Keeping a notebook of everything is a great idea. i keep all doctors notes etc... in a regular notebook. I like your idea better. Thank you for sharing the difficult in your family right now.
Mary
Hi Patter! As many others, I too am joining in to intercede on your behalf in prayer! Patter, you KNOW the God is Good ALL the time! All those years of BSF have prepared your mind and your heart and your journey for "such a time as this." Patter, let's call on the Name Jehovah Rapha – The Lord our Healer who heals all our troubles. He heals all our sicknesses, and He heals our souls!
10,000 Blessings,
Valerie Martin
P.S. My sweet neighbor also has CM and for the last decade that I have know her, I have watched as she has valiantly fought this terrible disease. I know a lot of what she has gone through and the numerous brain surgeries that she has endured. I do not wish this on anyone esp. your precious child! Many, many prayers are being lifted up for your daughter and your family.
Patter,
I have been anxiously awaiting news on colleges for the girls. We are going through the process ourselves with our grandson who we have raised. I also homeschooled him through 8th grade. I certainly didn't expect news like this. Are you still homeschooling the girls? If so, it will sure help with attendance problems that you may otherwise encounter. I am just now making my "copy" of your prayer file box and you will have a card in there, for sure. I just had the nicest interaction with you about the hymn/scripture study that I made a card for. I will be praying without ceasing for all of you during this difficult time.
Sherri Nowak
Patter, my prayer for you at this time is first, God's peace that passeth all understanding in whatever you need. Second, that all the seeds of kindness you have sown will come back to 100 fold. God holds all of you in his hand and on that you can count joy. I am grateful that God has already answered so many of your prayers already and so quickly, and may your storybook be your comfort, and your help as extra brain power for each of you as you deal with so many new people in such short periods of time.
I will be praying for your daughter and your family. You are a source of encouragement for me. I love your posts and I love you.....Dana
Oh Patter, I am continously amazed at our God use of you and how He speaks to all of us if we will listen. This morning I am working from home and God said go to Patter's site. . how awesome is that. This format will be perfect for this journey. Please kiss your babygirl for all of us and hugs from us . Dear Father, we pray this morning for a hedge of protection around Patter and her family as they travel this road. May your name be magnified in this storm. We know you are the Great Physician and that our sister, Patter is faithful to you and so you are faithful to her". Wegive you the honor and glory, Amen. Joshua 1:9 " Do not be discouraged, do not be afraid". We love you
Patter,
I'm so sorry that once again a "hug won't fix the hurt." (Remember the book? Please know that your whole family will be in my prayers. My heart aches for you that you have to walk thru this valley. As a parent, watching your child suffer is sooo hard. May you feel the Lord's comfort and grace as never before. {{hugs}} to you my friend.
Oh, Patter, my heart hurts for you. Praising the Lord for the attitude He's given you to endure this. He has a purpose and His plans are always good. Praying for you and your family!
Praying for you and your daughter. Take heart, this condition has a very good outlook!
My prayers are with you and your family~using the album like this will be perfect!!
Post a Comment