Saturday, July 11, 2009

Feeling Worn Out

I come here tonight asking for prayer. The peace that had blanketed my heart last week seems to be thinning. Isaac's birthday is approaching, and while the joy of having Hope here seemed to overshadow some of my sadness and grief, I am finding those things sneaking back in with her recent diagnosis. I am very well aware of the fact that God is indeed in control and is 100 percent capable of healing her. I want to believe that He will or maybe even that He has, yet I have prayed for healing before and have yet to see it this side of Heaven.

Hope's diagnosis is daunting for me. There is no one locally that I know of who has any knowledge of this disease and I do want to be sure she gets the best medical care possible. I have so many questions and so many fears. The thought of her growing up in constant pain, bearing the physical scars to prove it is maddening. Small things such as immunizations and how to take care of routine things without damaging her skin baffle me.

If I am being honest there are even times when I sit here and think, HONESTLY, I have already had to say good bye to two of my children and now this uncertainty, what on earth did I do to deserve this, what am I not learning that God is trying to teach, and why do my children have to suffer for it. When Isaac died four years ago next week, we had the testing done, biopsy and autopsy, both came back saying we had no reason not to continue to grow our family and honestly I feel a little duped. Now, that said, I realize it was God's plan for things to happen as they have and I am very thankful, we now are the parents to FIVE amazing kids! So often I feel as though my life is spent holding my breath and waiting for the next storm. I am human and if I am being honest, I have to admit I do have times where I sit here in self pity.

I have no idea what we are going to do for Isaac's birthday, I am still scared to venture out too much with Hope and we just don't have the money now that we are making multiple trips to Pittsburgh and paying deductibles and copays out the wazoo (is that even a word?) Maybe a picnic at the lake, who knows.

Now with all of that whining out of the way I can also say that I am praising and thanking God that Hope is still doing well. She has no blisters just a couple little scratch marks. She is still nursing very well and thriving. She is starting to make sounds other than cries and it is awesome. We are hoping to get her pictures taken soon once her heat rash/infant acne clears up a bit. We enjoy her so much and I can't say I am sad that mommy is certainly her favorite person! She is really playing favorites these days! Only mommy will do!

I also must say that as I look to God for answers here I find Him reminding me to be patient, be still and to wait on Him. I am doing my own little study on worry and hope to share that with you soon. It is tough to find time to type with two hands and my one handed typing though improving is quite slow.

I am still also struggling with the idea of prayer, I want to pray effectively for Hope and have no idea how to do that. I welcome any insight you have on prayer, like, is it appropriate to pray for healing of Hope or do I just pray for God's will and peace for my heart. I am lost here. HELP!


Anonymous said...

My advice is to open your heart to God, he knows your desires. Try to take one day at a time, one minute at a time if you have to.
Don't put pressure on yourself for birthday's, enjoy the pleasure of your family and the memories you have of your sons in Heaven. Sometimes that is praise in and of itself. Just memories....

Kristy said...

Hi Kristy -

I can certainly understand your feeling of being overwhelmed. My son Carson, was born with Epidermylosis Bullosa Simplex just over 6 years ago. Because his condition was so severe at birth, he was initially diagnosed with RDEB, but the tests came back EBS. Even after it was confirmed that he had Simplex, the idea of finding doctors, treatment, etc. was mind-boggling. If you have not already been in touch with dEBra, that would be the first place to start: www(dot)debra(dot)org. You can speak to a nurse and connect with other parents. I believe they will be able to help you find a doctor in your area. Also, if you can, I would recommend your contacting Dr. Jo David Fine at Vanderbilt in Nashville. He is one of the leaders, if not THE leader, in the research and treatment of EB.

We will be praying for you. Feel free to contact me if you have any questions.

Mom to Carson, age 6, EBS

Anonymous said...

You may be interested in reading a blog by another new mom that has a child born with EB. It is

~*~ Allison ~*~ said...

I came across this Bible verse today & feel a tugging on my heart to share it with you:

Hebrews 11:1
Now faith is the substance of things hoped for, the evidence of things not seen.

I, too, recommend Connect with this family.

As for prayer,there are days where I would say pray for a healing & then there are days I'd say pray for God's will. For now, be thankful.

You are in my prayers.

Many blessings,

Becky said...

I absolutely feel it is appropriate to pray for healing. Paul prayed to have his thorn removed. I feel Scriptures support prayer and asking for what we desire - although leaving the results to Him. Being at peace in knowing His plans are for our best. That if you change the 'D'in disappointment, you have 'Hisappointment.'

As you begin to research, perhaps you will find a support group. We had a child with a terminal diagnosis - tested positive 3 times. After treating her diagnosis for a year, with no new symptoms developing, the doctor did retesting and she tested negative. My husband later told me that as he was praying about it, he told God that it was something he knew he would not be able to handle. It surprised me. We found an amazing support group - although her diagnosis was more common than yours is. I will be praying for you Kristi. If you are not going to church, I will pray that will be one place you feel comfortable going. A church family is invaluable as you well know. Take care.

Anonymous said...

Wow, Becky! I like that! disapointment becomes Hisappointment. I needed that today.

Kristi, my dear, emotions are such a roller coaster! I'll pray that you'll have God's peace no matter what!

Leah said...

I have been checking on your blog since MckMama mentioned you awhile back. I am often reminded to pray for you. My mother heart feels very heavy for you as I understand the worries of trying to protect our babies from the unknown. I will pray that God will fill you with His peace to be able to face whatever lies ahead.

Your children look so happy and healthy. Hope is adorable!! I am rather partial to little girls as my husband and I have 3. =)

Brookeanne said...

You and Hope are in my thoughts and prayers! You are so strong!

Lighthouse Photography said...

Oh Kristy I can feel your worry and all the way here in Alabama. You have endure/ing so much and I do pray for you everyday. I have loved and lost children and now have a child with Cerebral Palsy and other medical conditions so I know worry.

I am no spritual guru but here is what I do when I dont know what to say to God. I sit a listen to Him. He knows my heart anyway and knows what I "want" and that a full and complete healing is #1 on that list. So for me sometimes to say anything else feels fake. So I sometimes just spend time being quite and listening. He always fills my heart with a prayer. And I know he will do the same for you. For me sometimes that prayer is to just Be still and know that He is God. Even if I dont understand what, He IS God. I also write my prayers and that helps me to focus and really reflect on what He is teaching me.

I hope I dont sound preachy because that is NOT my purpose. I just know that feeling of being lost for what to pray becuase of the worry and hurt.

MendedHeart said...

Dearest Friend when I read your post my heart was lead to give you this Scripture: “For though we walk in the flesh, we do not war according to the flesh. For the weapons of our warfare are not carnal but mighty in God for pulling down strongholds, casting down arguments and every high thing that exalts itself against the knowledge of God, bringing every thought into captivity to the obedience of Christ” 2 Cor 10: 3-5. I want you to meditate on this and ask Holy Spirit to reveal it to you. This goes very deep. We are only human and sometimes we are so hard on ourselves. I can relate to what you are going through, not only have I experienced the loss of a child but went through many trials and tribulations. Sometimes I felt as though I am losing my mind and then, with forced discipline I would put both hands on my head and just confess loudly: I take each thought captive in the name of Jesus TO BE obedient to Jesus and Jesus alone. Satan comes and tries to steal not only our joy but the Truth too. I believe Hope IS healed completely and satan is trying his best to attack your heart and thoughts with fear. He even takes advantage of the fact that Isaac’s birthday is coming up – he knows you feel fragile. You feel fragile but Sweetheart you are strong – Greater is He who lives within you than he who is in this world; just remind satan of that. Keep on quoting the Scripture and he will flee. He can’t stand praising too. Those are your weapons. Praying for you. Hugs and love.

Mendy said...

Several years ago my Sunday school teacher was sharing a lesson with our class. I don't remember all the details of that lesson, but I remember being encouraged to pray for specific things we desire. God knows our hearst even if we don't pray for it. So, lay it at His feet. Pray for healing for Hope. I know that I will. I don't know that we have the ability to "change God's mind" but I certainly believe he works His will into our desires if we are doing our best to follow and serve Him.

I will be lifting you up.

Tiffany said...

I was always taught to pray about what's on your heart. To talk to God like you would any other person. Though, I do not know what you are going through as far as her condition goes, I can tell you from my personal experience with Logan and his SB that when I for him, I pray with my heart and I pray about what is on my mind. And, I tell him exactly what I want or how I feel. But, I always tell Him, that I know He will do what He sees as best for our family and that I fully trust Him. It sure is not easy to think that way though. Especially seeing the things that Logan struggles with on a daily basis. But, I know that God will get us through each and every obstacle whether they are what we want for Logan or not. I am here for you Kristy. And, always remember that you have lots of people that love you and are praying for you!!


Michelle said...

Wow! I wish I had some wisdom, but I have to say you always amaze me. I don't think I've ever commented before but I read all the time. I know God has a plan and I think the hardest thing as moms is waiting for God to show His plan when it concerns our children. I will pray for you and Hope, she sure is a beauty. God handpicked you to be Hope's mommy and I think she is a lucky girl.

trennia said...

I hope this comment goes through...I have tried hard to email you and leave comments but I always get them returned?
Anyways I'm praying for your baby girl...I know birthdays are hard to deal with when your little one is not here.Praying for your family..

Anxious AF said...

You should definitely connect with other families going through this. That has been my source of strength with Alex and RTS. I remember not wanting to at first, maybe it was denial, but it has been my rock.

Amanda said...

I have been reading your blog for about a month and I've been praying for you guys. In the Garden of Gethsemane, Jesus said, "Father, if you are willing, take this cup from me; yet not my will, but yours be done" (Luke 22:42). I think you have full freedom to pray for your precious baby to be healed.

Also, one of my favorite books is by Gene Edwards and it's called The Prisoner in the Third Cell. It's really beneficial when you're having a hard time with why God allowed this or that to happen. It has to do with John the Baptist. It's awesome and a quick read. Blessings to you!

Marie said...

I remember you posting once, that even though you were furious you were told everything was fine after Isaac and could have more kids, that if you'd known there was a problem you might not have had Ben. From what I understand genetic testing is pretty complex and not everything shows up.

I don't think God is doing this to you, you just clearly have some genetic issues in your family. Thankfully Hope's EB is very mild at the moment, severe EB is so hard on a small baby as you will know if you've been to Jonah's blog. If it gets worse later you will deal with it and she will be a very loved child in spite of her illness.

Trisha said...

Hey girl! I wanted you to check out this blog, they are dealing with this issue also(don't know if it is the same type as your daughter, but it might help you)

I am praying for you and your little girl!

Anonymous said...

We know that God already has a plan in place....but I believe He wants us to "ask" for our healing! It shows our FAITH to BELIEVE that He can heal! Whether He chooses to heal or not doesn't change the fact that we believe He can! If you read the blog from the Williams family, I think you'll realize that God is already at work in your little girl's life! Be blessed....

Marie said...

The Lord already knows what you are praying for before you even say the words, God is all mighty and we have to place our trust in him,You are not walking this path alone, Jesus is there with you. praying here in NC for your precious baby also

KK said...

Sweet thing, you just pray what's on your heart! God wants you to talk to Him, its not so much what we say, but that we show up. That amazing Holy Spirit will interpret for us! Praying for you!

Jennifer said...

Like I said before I feel she is already healed...I think we seen a healing right before our, trust and Praise Him..He's waiting!

Laurie in Ca. said...


Sometimes when we don't know the way, and it weighs so heavy on us, the spirit intercedes for us to the Lord. He has the words that we don't have. He knows your "mothers heart" for all of your children. You are ENOUGH, though it may not feel this way to you. Just keep pouring your heart out to Him in thanksgiving and hand him the rest. I always pray for healing because I know who the Healer is. I ask Him for the best that He has promised. And I try to be still and know. Not easy, but He is faithful. Hope is a beautiful miracle from Him to you. Love the daylights out of her and watch her love you back. Your Mother-Daughter bonding began the moment she was born and grows each day. Fill your heart with these things as you seek the best care possible for her. You can do it because your strength comes from the Lord. I love you Kristy and prayers continue daily for you.

Love and Many Hugs, Laurie

Anonymous said...

We spoke through email once, and I have checked on you since, but life here is a bit nus. We had lost our son to a rae immune defiency diseas and was even told it was next to impossible to happen, but it has with our daughter. I say the same things to myself why and I question my faith alot lately. We are getting ready to leave for Cinci from Delaware on 7/20 till Thanksgiving as long as all goes well. It is so hard to know whats right at times b/c we will be leaving hubby and the other 2 kids behind it breaks my heart. I believe its ok to question you faith b/c in the end you realize God is good. Oh well I better cut this short. I pray for you and your family often.

Shan said...

I read here often but rarely comment. I have to say, the thing that comforted me most when my daughter was diagnosed with Leigh's Disease (they tell us it is terminal) is something a Lutheran pastor mentioned when he came to visit us in place of our pastor during those dark days at Children's Hospital.

He told me that even when I don't have words to say, when I can't string the thoughts together my soul is praying, and the Spirit prays on my behalf. God knows what's happening, He feels our unsaid words. When you love on her or just scream why silently in your head He is hearing, and He is answering though it may not be immediately evident.

Now, nearly 2 years later with a girl defying her prognosis and medical progress that can only be explained as miracles, I know what he meant. During my darkest most hopeless hours you don't really need to conventionally pray, He is beside you. He see's it all, He doesn't need the words.

Anonymous said...

God knows your heart already, but share it with Him. And ALWAYS pray believing! But always remember that God is in control of everything. If He anwsered all of our prayers we'd be god and not Him! We are praying for you and your family!

Amanda said...

Will continue to hold you up in prayer. I'm so sorry that your family is facing this new, additional struggle.
Blessings, Amanda

Anonymous said...

I always just pray for what is in my heart. I also pray that if this is not his will to please help me to understand or to have peace and still trust in him. It is hard to understand how to pray and why no matter how hard we pray we don't get what we ask for. I once read God doesn't always give you what you want but what you need. Sometimes that makes no sense either. Just take comfort in know that in your what you call "self pity" God is still there understanding and wanting you to feel His arms around you, carrying you down this path. When I am feeling overwhelmed I ask God to please take this from me that I ma having trouble handing it over to Him. Please help me hand it to You. And usually the next day when I get up I do feel a little lighter. Some of what you are feeling could be those lovely hormones we have after we have a baby. They can reap havoc on our systems!

I will be praying for you and for your family.

Unknown said...

Dear Kristy,
I can totally relate to where you are - it's kind of weird actually how similar our stories are? I lost two infant sons in 1990 and 1995 - and then I had a daughter born with congenital heart defects who lived 6 1/2 years. I think you already knew that. I can't remember if you read my book - did you?

I just want you to know how much my heart feels for where you are. I remember feeling the same way - that it was unfair that I was given so much. I was a little jealous over people who never had to experience heartache in that way...I wished like anything I could just be done with the anxiety and fear that often consumed me over health related issues (in utero and out of utero).

I could write so much more here, so many things come to mind that I want to share - but I just want you to know that I'm here to talk if you need to.

If you haven't read my book, I think it would really minister to your heart. Let me know if you'd like to read it.

Also, I feel so compelled to say this - spend time praising God that Hope doesn't seem to have any trouble right now. What a blessing! I had to do this with Anna - live EACH day praising God for her health - Anna's future was uncertain - she could have lived 50 years or 5... I determined to see her in my future and purposed to not think about things like surgeries or illness. I enjoyed EACH day and on days when there was a symptom of some sort I'd deal with it that day...week, etc. and then move on. I DID worry. I don't want you to think I didn't...I am human and feared and was anxious, but I set rules for myself and tried very hard to follow them. I also often considered the fact that Jesus might come for us today and would I want to waste my time in worry and fear? No, I want to serve my Lord every day, seeing my future - which is pleasures forever more.

I've gone on too much, but my heart was just so affected by your post and I just had to respond.

I'm praying for you and your family.
Dancing Barefoot on Weathered Ground

Stacy F. from Arkansas said...

I am lifting up you and your family in prayer. I have a daughter with cerebral palsy. She and her twin brother were born 12 weeks prematurely and spent 4 months in the hospital. They are now 18 years old. It is an emotional roller coaster when your children are hurting and sick. Don't be so hard on yourself and allow your friends and family to minister to you...they can be the hands and feet of Jesus. Just know that The Featherston Family in Arkansas is praying for you and your precious family.

Anonymous said...

OK, we do not know each other. But as far as honoring Isacc on his birthday. Honey, you honor Isaac everyday. I agree his birhtday is very special, but try and not stress. Perhaps just relaxing and remembering, will be good. Hope is a beautiful baby, I know nothing of ED or DEB. But if Hope has it, beauty must be a part. Maybe allowing your self to be angry for a while, will help. Not angry with God, angry with doctor's. God is with you, total strangers pray for you. You are not alone. I believe many good things are in store for you and your family.


R said...

I'll be praying for you- and yes, it's important to pray for both healing and God's will. Sometimes they coincide, sometimes they don't. I'll be thinking of you tomorrow and remembering Isaac- tomorrow will also be 1 1/2 years since our son was stillborn so I know that while time helps it doesn't totally take the pain away.
Peace & love to you

Jessica said...

I have recently found your blog, and I want you to know that I am praying for you and your whole family.

I am not sure where you and your family live, but I would also recommend Dr. Jo-David Fine at Vanderbilt in Nashville, TN. He actually specializes in the treatment of EB.

I can also personally recommend him b/c he is my dermatologist and one of my favorite doctors all around. He was able to diagnosis and successfully treat a skin condition that I had when no one else seemed to know what to do.

If you need any additional information about him please let me know.

Anonymous said...

You have been in my prayers since I found the link to your blog. I'm so sorry for this new uncertainty.
Please remember, when you cannot recognize His presense, when your understanding is incomplete, when nothing seems to make any the Scriptures to find hope and strength. I will continue to pray for healing.
God Bless You
Anita from Wisconsin

my life: said...

I think of you and your family so often...

Anonymous said...
here is a blog about the family of an 11 year old girl with EB. They are amazing people and have a lot of knowledge about the disease.

Anonymous said...

Hi Kristy,
I found your blog when I was checking on my granddaughter's blog. I noticed it was suggested to you by someone else. Kourtney has RDEB and celebrated her 12th birthday on Sunday. Our family has gone through many ups and downs as a result of Kourtney's condition. She is now in the 7th grade and doing well in regular school. Her mom Janelle is a nurse and I know she would be happy to dialog with you as she has had to learn many things the hard way. Kourtney has been inspired by an 18 year old girl, Megan who she met at a skin disorder camp in Minnesota. Megan is now in college. We will pray for your family. You have gone through so much. Without God's comfort and hope, it would be impossible.
Grandma Bev We live in B.C. Canada
The blog is :