I had a dream...

Last night I had a dream. In the dream I was standing in a room with no roof, and the sky was brilliant. The room was full of the most vibrant and beautiful colors I'd ever seen. Despite being in a strange place it felt so perfectly right. There was a curtain and I cracked it. I saw the back of a child with long beautiful hair. She had on shorty PJ's.(Hannah's loved shorty pj's) She was turned toward a wall filled with letters, numbers, colors, shapes, calendars, & a number of things. My heart was beating almost out of my chest. There were about 20 or more other children sittiing criss cross on the floor. The little girl turned around and it was Hannah. She looked so amazingly happy. I couldn't get to her and it was frustrating. Finally I just stopped trying and watched as she took the pointer and began her calendar time. She pointed to things and asked a child what it was and they'd respond and she'd tell them "you got it going on girlfriend!" She reached up to the shape oval and paused a minute, ran her fingers perfectly around it and felt it.(Hannah had severe hypotonia in her fingers and hands and never could trace anything without assistance) One of the kids said, "what is it Ms. Hannah?" She turned and looked at him and said with true appreciation, "that my friend is an oval." They contnued circle time and another of the children said, "how old are you Ms. Hannah". Her reply was with a sheepish grin..."66.....nooooooo, I am 8 yrs old but almost 9!" For those who know Hannah she would always say she was 66 and then correct herself. It was another one of those awnry things she did. It also took her half a year to learn and understand that she had grown a year older. Thihs is where my dream ended...She looked up and right at me, gave me and wink and turned around and said...."story time". In her hand was the book..."The Farmer didn't wake up."(I buried that book with her because it was her favorite) I never got to her or talked to her. I was an observer. It felt o.k. though. Like I'd be back.

I'm not sure what to think about dreams. Right now I don't care. I'm just thankful for this one. It's helpful to see my girl happy and whole. It's unbelievably hard not having her with me. The last two days have been gut wrenching. I miss Hannah so much. We all do. Including Koolio. He still looks for her. Our lives have been forever changed. I'm thankful for every moment we had with her and I wish we'd had so many more. I've been really talking with God the last couple days about helping us through this and I know He is and will.

We really appreciate your continued prayers and support. I don't know what we'd do without it. Our family did start counseling last week to help get through this together. The last thing we want is for one of us to need the other and we be so wrapped up in our own grief that someone gets left behind. Pray for wisdom, strength and courage for us all. Love y'all so much!

Trying to keep going...

Well, we're back in real life now. What does that look like? It looks strange, wierd, and quite empty. I do not even know where to begin from here. A huge part of me wants to lay down, cover up my head, and never get up again. It's all the prayers that are going up for us that keeps us going. I just know it. Prayers have always sustained us and kept us through all of Hannah's obstacles and challenges.

I'd be a liar if I wrote that I do not struggle. I miss my girl unbelievably. She was a part of every inch of my life everyday. Every decision I made, everything I did, everywhere I went, all was wrapped around Hannah. I feel so completely and utterly lost. You just have to understand...she was my life for the past nearly 9 years.

I've wondered did I do enough? Is there something I could have done? Did I miss something? Could I have intervened sooner than I did? Why did I let the epi cancel the testing that was scheduled for Jan. 4th? Could I have fought harder for them to get to the bottom of what was going on? Would any of that have kept her with me longer? The second guessing will drive me insane so I have to stop. All I know is that I loved her and I tried to do everything I could to help her.

Saturday when her lungs quit working I went to take a shower to just get away. I knew things were not looking good. I leaned down in the corner of the dressing area and told God that I wanted her to stay with me. That I wanted my girl with me, but that if he needed her or it was time for her to go I would still love Him. I just wanted Him to know that my desire was for her to remain with me. He chose to take her and I keep my promise. I still love Him.

When we made our decision to take her off life support we called everyone that wanted to say bye to her and let them. Most of her teachers, some family and friends were all able to tell her bye including her little PAL(high school mentor). I would have it no other way and am so glad we made the decision to allow that. Hannah LOVED every one of those people and I'm so glad they got to tell her they loved her and good bye. Then David, myself, the boys and Koolio made the decision to go ahead and remove the life support and she was in all our arms with Koolio licking her feet as she took her final breath. It was so peaceful and not at all like I might have expected or imagined. She passed within minutes. We held her for a while and I sang, "I love my Hannah...she loves me too...I love my Hannah...in everything we do". It was absolutely the most painful thing my heart has ever experienced and I pray I never have to do it again. I can't even describe the pain I feel at her loss. There is a peace but it still hurts mercilessly.

Her funeral was perfect. Hannah touched so many lives and only Hannah could have brought together so many different people and make them a family. She was just such an amazing little lady. I'm so thankful for all the people who came to pay their respects. It was an incredible tribute to our angels life. One I'll never forget.

At the grave site when we were finishing up David made an request and the boys and I ran to his side thinking he was going to really fall apart. He then asked if everyone could sing the Barney song because he thought Hannah would like that....the entire group of people sang in unison..."I love you...you love me...we're a happy family...with a great big hug and a kiss from me to you...won't you say you love me too". It was absolutely the most perfect thing in the world for the moment. I'm so glad Hannah had such a wonderful daddy who loved her endlessly and tirelessly.

Hannah loved school and her teachers so much. Her teachers were amazing. I can't tell you how much appreciation and love I have for these ladies. They made our girls life as full as it could be and I will forever be grateful for it. I'm so glad I made the decision to set my fears aside and let her experience school.

I have no idea what life holds from here. I do however know that our girl put up quite the fight to live life and I would be doing her a memory a dishonor not to keep fighting and living as well. Please continue to pray for us. I'm not sure how much I'll keep up this blog but if I decide to move on to another blog then I will let you all know so whoever wants to continue to follow can.

Please keep praying for us. We desperately need it and appreciate it.

Prayers

Just a note to say that we appreciate prayers and ask that you continue them. We've taken a few days to just be together. We still have some heavy days ahead of us and taking a few down days just seemed like the best thing we could do for our family right now. I miss my Hannah beyond description. I have been wearing her hair tie on one of my fingers ever since we were at the hospital and I just can't bring myself to remove it. Her funeral was beautiful and perfect. Just wish she was with us. Love you all!

Hannah's obit

You can see Hannah's obit here...

http://www.marshallandmarshallfd.com/

Funeral arrangements

Funeral arrangements for our girl are as follow...Wednesday visitation 6 to 8 at Marshall and Marshall funeral home in Hillsboro. Funeral will be Thursday at 11 at Central Baptist Church in Hillsboro. Interment 4:00 in Tom Bean at Vittitoe cemetary. She will be buried next to her nana.

Our last photo with Hannah

I've debated sharing this photo. It's such a public forum and such a private moment. However, there has been nothing private about Hannah's life. She's maybe unfortunately had a mother who is an open book and talks too much sometimes. I do feel like because I was open and I did share her she was blessed beyond measure with so many people who loved her.

Hannah passed away in our arms at 5:15 today. Koolio was there but the nurse didn't capture him in the photo. He licked her feet until the end in true Koolio fashion. LOL!

Thank you for being part of our girls life. I know I should be sleeping and I promise I'm going to try but...well, those of you that know me...sleep has never been a part of my vocabulary since the day Hannah was born.

I'll let you know about funeral arrangements when I can. Love you all and thanks for everything!

Our last photo with Hannah...

Hannah is going to see Jesus...

I want to thank y'all for praying and ask for continued prayers. Our Hannah isn't going to make it. Her brain is no longer functioning. It'll be a while before I post again as I want to spend as much time with our girl as I can. Koolio is here at her side as well as her brothers and me and David. Love y'all!

no change

No changes in the night. Numbers still going up so dialysis is almost positively happening. Calling in a lung doctor. Stiill not waking up. Hoping it's sedation build up.

Rounds...

Doctors just made rounds. NO kidney biopsy results yet. They are saying maybe tomorrow. They have stopped all sedation to see if she will wake up. They are inserting a feeding tube and going to give very small feeds. Also going to try a different diuretic to see if it will work. If it fails she will have to do dialysis to get this fluid off of her. It's been melt down day for me but I'm doing o.k. thanks to the love from others that is surrounding us. This stuff ain't easy. Please pray for Kyle. He will come up tomorrow and if things are as they are today it will be hard on him. I will be glad to see him. I miss my boys! Zach has a hard time seeing her this way and we don't force it so he probably won't come. Please pray for them as you're praying for hannah.

I want to thank everyone for all the concern, prayer, company and help with anything we need. This is going to be a long road and it is so great to feel like we aren't in this alone. We love y'all and please, please just keep praying for our angel girl. Also pray for Koolio. He's not allowed in PICU but is on the EMU floor if and when she ever moves there. This is the longest he's been without his girl since we got him. He's doing o.k. at home with the guys but he misses his girl I know. Thanks again for everything!

lung issues

We still need a miracle. No changes. Now she's having an episode
with her lungs and she's not breathing much on her own. Her pupils
are sluggish. She hasn't moved today. Thinking maybe too much
sedation but just don't know. I had a prayer meeting in the shower
while ago.

The song..."who's report will you believe" just keeps going through my head". I know God is in control and his will is perfect. I continue to put my trust in Him. Continue praying for a miracle please. I'd give anything to hear that voice and see those eyes right now.

Stinks

Man...Man...Man...This is stinking! Basically Hannah is in renal
failure. It's looking like dialyisis is on the horizon. Still
awaiting results from biopsy. Hopefully by the afternoon. The
ultrasound was good. She's having lung issues from fluid build up.
I just told her that she can stop now.

I've learned all I want to about kidneys and lungs. She hasn't
awaken but she's sedated due to vent. I'm not going to lose hope. I
just won't.

NO change...

Well, it's 4 a.m. and I'm sitting here watching my Hannah. I can't wait for her eyes to open and her to start throwing around her Hannah words and phrases. This is when it's all put in perspective and you cherish all the moments you've had and pray for so many more. I'd take a melt down even at this point. There hasn't been much change at all. Tests have been done that will tell us something. Her urine is a horrible color and it's almost nonexistent. We don't have much more room to go up on one of the numbers before they decide to do dialysis. She's also close to needing a transfusion. I really am officially terrified. Even in this fearful moment I do feel hope. How could I not with all that God has given the Chapman family lately.

I'm wishing I had brought a bible and some inspirational books. I've been using the online version though. I just keep quoting...Psalms 34:4 I sought the Lord, and he heard me, and delivered me from all my fears.

I'm so thankful for friends. This would be so much harder without you. Please continue to pray for healing of her kidneys. We need them to do their work. Love to all.

biopsy done

Kidney biopsy done. Still next to no urine output. She is swelling. Things are being batted around such as lupus, or post strep reaction, etc. My head is still swimming. Still on vent and still not awake. She is still fighting when they mess with her. Continued prayers are our number one request. We need God to work. Love y'all!

Not doing well...

Man, my head is swimming. Doing a kidney biopsy this afternoon. More tests ordered to see if we can get some answers. Neuro came in and after all this is stabilized she will go to the EMU floor so we can do some tests to see if she is surg. candidate, etc. More genetic tests were ordered today.

We will be in here for a while.... :( Please contiinue to pray for our girl. Still hasn't awaken but is fighting when messed with so...Love y'all!

Need a Miracle.

I am officially scared now if I wasn't before. Hannah's kidneys are not doing what they need to. We have a kidney doctor coming in today to try and see what is going on. Talk of dialysis etc. is going on. She's still on vent but they are going to try to take her off again today. Just please pray. Our girl needs a miracle.

fever down but another issue...

Sigh...we are in limbo and scared. Hannah's fever is coming down but now we're dealing with the fact that she hasn't urinated since this morning and she is being pumped with IV fluids so she should be flooding the place. They've started her on lacix. Her blood gases are still not coming back as well as they should be so she is not coming off the vent any time soon. We need all the prayer we can get for our girl. Thank you so much.

Not dong good

Hannah woke up a little and they tried to extubate her. It was unsuccessful and they think she aspirated and has pneaumonia. Still has fever.

Hannah's in hospital

We were careflighted to cook's this morning. Hannah had another 2 1/2 hour seizure. I will type more asap. Right now she has a very high fever and not responding. Please pray. Thanks.

Hannah's sick...

Hannah has another URI. This one is pretty bad. She's really struggling tonight and nothing is helping. I had to give klonopin so no school for her tomorrow. :( Prayer for some rest would be greatly appreciated.

Ready for another week...

Well, the boys enjoyed the Mav's game even though they lost. They said the seats were amazing and the parking wonderful.

Hannah and I hung out and cheered on the Cowboys. In the first quarter when someone didn't make a good play she said, "Stupid Cowboys...Come on!" Later when Austin made the touch down she said, "Go daddy's Cowboys! Touchdown!" They aren't the Dallas Cowboys. They are Daddy's Cowboys. She went to bed around 9 so I had a couple hours all alone befoe the guys got home. At first it was a little depressing but I soon took advantage of a rare occurance and enjoyed some peace and quiet. LOL!

Last week was a little rough getting everyone back into the routine of things and this cold certainly didn't help. Man, I do not like the cold. I can't wait til Spring! Brrrrrrrrrrrr! Hopefully this week will go more smoothly.


Love you all and hope you have a great week!

Hanging out...

The guys are going to a Mav's game tonight. We got tickets for Christmas and they are very excited about going. They have one extra because I can't go and all their friends are either grounded or had to bow out at the last minute so if any of you want to go, let us know. It's tonight at 7:30 against Utah Jazz.

So, tonight it will be just me and my girl. We'll play and cheer on the Cowboys. Since yesterday's atten-DANCE she wants to sing and dance to "Car Wash" and "Disco Duck". LOL! At least we're getting some exercise. Oh, and she called me a "pinhead" and told me she was going to "have a cow" last night. She also told her teacher yesteday...."alrighty..lets see...what will we learn today?" LOL! This morning she was in the floor looking under my bed and I asked her what she was doing and she said, "I am trying to find it." Then her daddy was working over his blackberry this morning trying to help a client and I told her, "daddy is working". She said, "daddy IS working....shhhhh....listen". I know that all those thing do not sound special for most 8 yr olds but for ours it is amazing progress. She has always been verbal but very echolaic. She still is extremely echolaic but she is gaining more spontaneous coversation lately. We're excited. Small things have become big reasons for celebration in our house. It's the best lesson I've ever learned.

Well, I hope everyone is having a great Saturday. God's blessings and lots of love!

More Atten-DANCE photos

See previous post...

Atten-DANCE

Hannah's school has an Atten-DANCE every six weeks for all the kids who have perfect attendance. This was the FIRST time Hannah was able to go. I just knew she'd enjoy it and she did. It had a disco theme and she had such a great time. Ms. Rebecca and her boogied! It was absolutely such a joy to watch. I know the teachers and parents think I'm crazy but so many times while watching her and taking pictures my eyes were filled with tears. She was so fascinated by the disco lights on the wall. LOL! She was trying to catch them. She wasn't the only one though, a lot of the kids were trying to figure the light out. It was a great day!

Kyle's 18th Birthday...

Kyle turned 18 on the 30th of Dec. We went to Magic Time Machine to celebrate. Hannah had a great time.


I Love this picture. These two are two peas in a pod.

The rest of the pictures are of Kyle and pals at Magic time machine and bowling.

stuff

Hannah's URI seems to be improving. Mine is kind of stuck but haven't been to the doctor yet. I'm a little worried about Hannah today. She had a melt down and there were no apparent triggers. I wasn't even in the room. I walked in and she was bawling saying something I couldn't understand and then she stopped when I put her jacket on. I hate not knowing what is going on. I'd give ANYTHING if she could tell me. She could be in pain and I wouldn't know it or it could be as simple as her shoes are bothering her. It's the saddest thing about autism, I think; just not knowing but wanting to know so you can help.

Also, we need to find a sitter for Hannah that can sit with her on occassion. Not too often but just every now and then. Please pray that we find the "right" person and that I can allow myself to enjoy a break. I have severe anxiety about leaving her ever.

I'm pretty tired this morning and have tons to do. Thank you all for your support and prayers.

this and that

Sunday turned out to be a CRAZY kind of day. I was supposed to take Kyle's girlfriend home but Hannah was up all night coughing and I was feeling bad too. Then David was going to take her home and his server crashed so he had to go into work and work all night and all day Monday. So Kyle, Hannah, and I took her home yesterday instead. That drive is to LONG. LOL! Hannah did better than I thought she would on the drive but was VERY ready to be home. Thankfully she had new toys to play with.

Everyone goes back to school today. I already miss the toots. Hannah didn't want to get up at all. She was comfortably cuddled in her Sponge Bob cover.

It appears Hannah got a new principal. I was totally surprised and had no idea. I'll miss Ms. Duncan. She was amazing and so great with the kids. The new principal's name is Mr. King. I met him this morning.

Pray for us as we endeavor to work more on development/quality of life with Hannah. She was potty trained at one time but after severe seizures just lost it all. Lately she's been showing signs of readiness again so we are going to give it a shot. We're so ready for less pull up use. That'll save us around $100+ a month right there.

Her teachers are going to start working more one on one with her in a less distracting area of the room so we can build on skills she possesses but hasn't mastered.

Hope everyone is having a great week!

Sick...

I was up with Hannah all night long. She coughed horribly. I don't know how many of these nights she can have before the seizure monster strikes. :( I'm hoping and praying that we can keep him at bay somehow.

I'm not 100% either. I've got a bad cold, I think. Probably have to go to the doctor tomorrow. Both Hannah and I.

Hoping all of you are enjoying health!