We went out for a walk tonight and a neighbor asked how things are going and I could tell Scott was about to say, "fine, good, or great", but I spoke before he did... I said, "hard...things are hard". Scott gave me a kind of a sideways look, and I told him I wasn't going to pretend. It is hard. The past couple of days have been especially hard. Katie has no spunk left in her. She just lies in my arms and softly moans and whimpers. It breaks our hearts to see her like this!!! She hasn't walked or played since Tuesday. Only a few smiles, no laughter...just moaning, sleeping or screaming and crying. It is one of the most painful things I have ever had to go through. It is so hard to listen to her, and to watch your once vibrant child lay so listless.
The steroids have caused Katie to develop some OCD type of behaviors. She bites and picks at her fingernails and her lips until they bleed. She has a hard time sleeping through the night. It is like having a newborn - she needs changed, fed and held. During the day she needs held so much it is hard for me to do much else (cooking, cleaning, laundry, grocery shoping) - which is okay for now, I am just not sure how I will manage when my sister leaves and Scott goes back to work. These are all hard things, but in time, I am sure we will adjust the the new routine.
Scott came and sat next to me and read what I was writing. He doesn't think I should post this. He said people will stop reading it, because it is too hard. I told him I am not going to candy coat it. I will be positive when I can. I will help Katie find joy in each day. I will be strong. I will be a good mom. But I will not pretend. I am not writing this to keep anyone entertained or amused. My main objective was to help people feel a connection with Katie so they would remember to pray for her. This is not my place to vent and I won't, but this is how Katie is - this is how things are. Maybe I should start with a disclaimer on the hard days: "Viewer discretion advised...this post is less than positive". Then you the reader can choose to read that particular days post or not, but I will write it as it is, and as it comes.
Today I am glad my husband took Katie and Conner to see the horses and chickens - that brought a smile and some joy for all of us.
I just pinned this quote from one of my favorite Broadway Shows, Les Miserables
ReplyDelete"Even the darkest night will end and the sun will rise"
No matter how dark it gets we will all continue on this journey with you. You are so inspiring- sharing at this difficult time- but always finding something positive. Our prayers will not cease for Katie and your family.
Epps Family,
ReplyDeleteI read this as I sit here at work at 5am in the morning. I am touched by the straight honesty of this post and I'm touched by the tender love you have for your daughter. I haven't spoken to Scott since our mission but even though many years have passed since we served together I still consider him and all my brethren from that mission as brothers. So as your brother I will pray for you and your daughter everyday and ask for her healing and for you as a family to find strength in one another. I wish I could do more. I wish that the "Hard" becomes "Easier"...but it's the Lord's way and somewhere in the "Hard" there is an opportunity. I don't know what but there's an opportunity.
My love to you all
Al Lino
626-428-6190
Your dear husband is dealing with this in his (man) way. You are dealing with it in your (woman) way. We are women readers, and we are with you all the way. We understand, our mother hearts feel what you feel about your precious Katie. Our daughter, adopted from Romania, had massive emotional issues for years, so I can totally connect to that part of it, lack of sleep, the stress on a mother watching her beloved child suffer, and suffering with her. After many years, our daughter was helped by a new therapy and is now an amazing person. Hope... hope on to hope. I cared for my parents, who I adored, in our home for the last 7 years of their lives ... watched them suffer, suffered with them. I understand, and I will walk you through this ... no disclaimers needed :)
ReplyDeleteHugs,
Mary
well honest im sorry i cant be there to help, i wish i was and Anndrea you are being a good mom i know it, im sorry that its hard. i pray for you guys all of you because i know it has to be painfull to see katie so sad and hurting. by no ways will i know exactly how it feels but it hurts to be so usless, to my family. i hope it all gets well soon. Love zachary. P.S. i love you guys
ReplyDeleteI can understand Scott's concern.... but, I appreciate that you are honest and open with your experience. So many are living in an unrealistic world and they want to see that everything is 'just fine'. We all need to buck up for what is ahead (or happening now) in our lives. Your experiences in this are a hard and fast look at what can; and, often will happen to each of us in one (or many....Job) form or another. Thank you for always expressing your faith and trust in the middle of your misery and fear. Your experiences, sadly, do and will benefit others. I just read this last night in a book my friend gave to me..."When we put God first, all other things fall into their proper place or drop out of our lives." (Pres.Benson, Ensign, May 1988) You know what I have been doing the last three years.... I have a personal testimony of this statement. Hang on and continue to keep hold of Heavenly Father's hand.
ReplyDeleteAnndrea thank you for sharing this trial with everyone on this blog. It is good for you to be honest....good for you to have this blog and to be able to express yourself and have social support. So keep it up! It is therapeutic. And we don't want sugar-coated....we want the truth, as hard as it is to hear. My eyes well up with tears everytime i read a post. We love you so much. Keep your chin up and keep the faith, and most of all keep writing. Someday it will be a great treasure for you and Katie.
ReplyDeleteThere is nothing wrong with being honest. It helps us know exactly how to pray! Praying for Katie's healing and strength and peace for everyone! Tami
ReplyDeleteI don't know what to say except that what you are writing is helping people have a connection with Katie. When you are sad and in pain because Katie is sad and in pain, I feel it. I have prayed for you guys all day! My husband would be just like Scott. I think that might be a "man" thing. Females seem to be more vocal (sorry Scott).
ReplyDeleteWhat you guys are going through is a hard thing and people need to know that you need their prayers. Someday your posts may help another family. The last thing you want to do is sugar coat what is actually going on.
My thoughts and prayers have been on all of you guys today. Please stay strong and take care of yourselves!
Love,
Kelly
Not a day has gone by that I have not thought about Katie and your family. I sure have missed Katie in nursery the last two Sundays. She is such a sweet girl. I love, pray and think of Katie and your famliy daily.
ReplyDeleteDon't worry about your posts being too negative. We need to know what you're going through so we can know what to pray for each day in addition to praying for Katie's recovery. Love you Andy!
ReplyDeleteI reread some of my posts when Danny was sick. Some of them were so dark and uncertain. There were days and weeks when we didn't know wether or not he would survive and decisions had to be made not knowing for sure that there would be a positive outcome. We were always "real". We had to be for our own sanity and to respect our son for the hell he was enduring. There's really no reason to sugar coat. When you let people in it allows them to know how to help, what to pray for and to have their testimonies strengthened when they understand the blessings and miracles. We are praying for each of you daily.
ReplyDeleteJust wanted to let you know my family checks in everyday. The kids want to know how she is doing each day. They never forget her or your family in our prayers. We are all still praying for you!! God sent Katie to your home because he knew that you and Scott would be the perfect parents to help her through her own trials in mortality. Not perfect, but perfect for her. You are not alone. You can do this!
ReplyDeleteHi there, I am a follower of Jen's blog and am currently undergoing treatment for breast cancer. There is such a difference in our treatments as being an adult I have made these decisions and am fully aware of the side-effects, etc but a child cannot fully comprehend what it is all about - it is very much about the here and now for a child as young as your Katie. I, too, believe in not sugar coating the truth and as my wig is so different from my natural curly hair a number of people have commented on my new style. I tell them the truth and that is often so well-received and I get so many upbeat comments it gives me a sense of better self. Hopefully that has been the case for you that in telling the truth you get the reassurance and sometimes the help you need at that time.
ReplyDeleteGood luck for all the treatments ahead - I know it is not an easy road and there are many twists and turns along the way but we have to remember that it is not in our hands but part of His great plan for us.
Take care, you are all in my prayers, Catherine
While it can appear to be easier (and I guess sometimes is) to sugar coat life, as a call-it-like-it-is kind o' gal I appreciate your frank and honest posts. It just makes more sense to be "real".
ReplyDeleteNaturally I think people try not to burden others with life's challenges. I think some of that is conditioned within us....we tend to respond with pre-set answers. We just do.
There's something to be said though for allowing oneself to speak openly. The direct approach is multi-faceted. Among other things, it allows for "freedom of speech", helps keep family and friends in touch with your families reality, and provides opportunities for others to know how and when to serve.
Share the good and bad. Share the emotions of the day. Share your families voice(s). Katie's Place is just that, a place for Katie's Mom and Dad to help her share her story and let Katie's voice be heard...keep the posts sugar free ;0).
Love and prayers sent out for each of you!!
P.S. I am *glad* that Katie and Conner were able to see horses and chickens...animals are very therapeutic (for me anyway).
ReplyDelete