I had a realization today that I don't readily want to say out loud or even acknowledge. However, these are the things God puts in front of us to confront. Okay here goes. I need a back up plan or actually I want a back up plan for everything. I for plan everything even backup plans. Why- well I need to trust more. I want an extra this or that just in case. I actually want a little Jaguar I have had my eye on a few weeks so I can have a back up car. Do I really need a back-up car. Don't we need 2 cars? Back up plans for vacations, houses, dinners and I even think kids. I have always wanted a large family. I have backup plans for more kids. I tell my husband he is hard to satisfy always wanting more toys-electronics. But am I satisfied?, why do I need to back everything up. I think I am satisfied but I want to make sure nothing messes with my satisfaction. I am comfortable and I like being that way. I need to make God my only plan and I know that what he has planned for my life and family is the best whether it is small or large. I have a hard time throwing things away too. I might need it again one day or it is a backup. Some of this I attribute to being poor as a child. You never know when or what you will have so keep everything. I am so glad I married Noah- he throws everything away. (Of course I will never admit to him I am glad he does.) I don't want to be one of those people on TV on the next episode of Hoarders. BTW no backup plans for my Marriage. :) So whats my task for tomorrow- back-up substitute plans. I was out today and had no back-up plans. Ironic huh! Do you have backup plans?
Hunter went a record 40 days without an episode. The episode came on quick and is already pretty severe. We met with Hunter's home care service today and lost respite care for Hunter because of Medicaid payment cuts. Yuck! We are happy about the 40 days we had. Hannah has been having trouble sleeping. She read in a book about insominia and now she has it. (Sounds like my husband.) I feel bad about Hunter starting and sometimes I feel like its my fault. I know it is not -but just when I start hoping that Hunter might not have another episode- boom it comes out of no where. This one hit hard and fast.
My friend Tina recently wrote Thailand is what she expected both poverty and beautiful. I think that explains Hunter's life. Beautiful in the days we get to expereince normalcy and poverty in the days I know are ahead.
Wow, the last six weeks have been a blur. Often I feel as if my entire life is a blur. I also continue to take on more and more with out knowing how to stop. With that, Noah and I are taking foster classes with the hope of adopting. I want more children so badly. I want Hannah to have someone to talk with about weird parents or to fight with and it be a "fair" fight, I want her to have someone to talk with, call when they are older, and share memories and toys and have a sense of no matter what I have a sibling that is there when the going gets tough. I know that at any time God could heal Hunter and they could share those things, but I also know it might be his plan not to heal Hunter. I have decided it would be too scary to have another child, sometimes I do "dream" about a baby, even know what Iwould name her/him. It brings such mixed emotions. Then I think are you crazy, your life is crazy enough. Which brings me to Hunter....
He was in an episode a week ago- it was short and mild. He came out - now he is back in another one- not so mild. It started the first day of school. He also has a tummy bug. YUCK! he has learned to say Yuck.
Hannah is doing well. We are going for a short labor day beach trip. It will be the first time this summer she could go swimming. We are going to the Isle of Palm if any one knows a good place to eat- we would appreciate the info (especially Tina).
Oh yea, Our cat is in HEAT!!!! HELP ME, it is crazy. its sounds like it says Hannah, Noah and hello sometimes. Really creeps me out.
Do you ever wonder why we have to wait. I feel like all I do is wait. I feel I am patient. I feel like have to wait a lot. So what is God trying to teach me. Or is he, maybe it isn't his perfect timing, maybe not the right decision, who knows. I am thankful I have HIM to rely on. When he answers he sometimes does so with grandeur and sometimes with sheer meekness. What ever way he reveals it is perfect. With all that said, I had 2 goals this summer, 1 to get a teaching job and 2 to find a way to continue to get Hunters medicine. 1 would have helped with goal 2. I have yet to find a teaching job so I guess I'm still waiting. God assures me in his time and it will be perfect. I know, I know, have patience. Even with his whispers of confirmation it is still my nature to ask, "Are we there yet?" Anyway on to goal 2. Today somehow in a galaxy unbeknownst to mankind a pharmacist and a doctor have found a secret formula to write a prescription a specified immaculate way in order for Medicaid to completely pay for Hunters mucho expensive medicine. I am not asking questions, just saying THANK YOU!!!!!!!!!!
Noah and I leave for a fun weekend in Batcave. We visit there every year. We have friends who own a beautiful bed and breakfast called Hickory Nut Gap Inn. We are taking several couples with us and rented out the entire place. We are so excited to be able to get away and spend some time together with each other and time with some great friends. The only problem- of course there is one- duh- is Noah's parents went on vacation and Hunter started and episode tonight. So Noah's brother and sister in law are going to have the kids and their new baby with Hunter in an episode. I should stop taking my closest friends with me so I have a back-up-LOL.
Noah has gotten himself in a world of poop (no pun intended). Hannah has been asking for a horse. Noah gives the "dad" answer "we can't afford one honey", but daddy Hannah says I really love horses-(lip poked out and big blue eyes batting) what if I get a free one, well honey if you get a free one, a free place to keep it and someone to feed it all for free- I guess you can have a horse. Well do NOT, I repeat DO NOT underestimate a 9 year old who has had 2 open heart surgeries. She can pull at the old heart strings with about anyone. She now has a free horse, free place to keep it, a person to feed it for free and a trailer at her disposal. That's girl power right there!
Thanks for tuning in- more ramblings from yours truly when my family does something weird - which happens daily, I just would be typing al the time- if you only knew.
Well we made it home last Sunday. We have been home for a little over a week. But not before some Compton mayhem. Sunday the 12th was Hannahs birthday, we were released that day. She was so happy! We drove about an hour and stopped for a bathroom break. Hannah walked in and walked back to the truck and passed out in the parking lot of a Mcdonalds. We had no idea where we were. I called Duke, they said to call an ambulance. We did. The closest hosptial happened to be Winston Salem Baptist Hospital. I thank God for having his hand in EVERYTHING! It could have just as easily happened another hour or so down the road near a tiny unknown hospital. About 4 hours later we were cleared to leave. She had just fainted from the heat and anemia. Which we knew about. She is on iron for 2 months. This I told her was her present - tour de hospitals As the rest of my life goes we just got home and Hunter started an episode. I looked up to heaven and just said "Really?" - okay God. As long as you are with me, just please let me sleep some. The episode lasted through yesterday. Hunter has actually slept through the night a couple of times this week. Hannah has done well and had her stitches taken out today. UGHHHH! She has had so much lately the anxiety was overwhelming. She cried and screamed in the office, before and during, which made them very hard to take out. There were two. Everytime the doctor had it she would wail and he would lose the stitch. ughh. So everything has some sort of benefit! 1. Hannahs heart was completely fixed- for good. The doctor was able to repair it using only her tissue, no rings, valves- nothing- and it was worse and more deformed than they thought. God really showed off big! We were expecting a ring, which would have to be replaced and eventually a valve replacement, but God is the Great Physican and heals!!! No more surgeries!!! 2. The food- Many different people from church and my small group have brought food the last 2 weeks. WOW, can our church cook! It started off with some amazing pork tenderloin, melt in your mouth mac and cheese and hasn't stopped. We have just finished a delicious chocolate cake with whipped cream that is 2 die 4. Thanks to all of you that brought the yummy food. I haven't had to cook yet and don't have to the rest of the week!!!!! YAY!
Well I am tired and going to put the kids in bed. Another dr. appointment tomorrow. Hunter this time- ingrown toe nails removed (both feet). Captivating Huh?
What an exhausting 2 days. Hannah is doing okay. Her surgery was a success. The doctor was able to repair both flaps of the valve with only her tissue. There was more damage than we thought. Both of the flaps of the valve were damaged. One had grown into the patch they placed when she was an infant and was stuck open. The other one had a cleft in it allowing blood to flow through almost always. We are amazed that God not only answered our prayers but went above and beyond so Hannah didn't have even the valve ring put in. We weren't expecting this at all, honestly didn't even know it was a possibility. We praise you always God. You are mighty and merciful.
I'd like you to continue to pray because she is running a slight temperature and she hasn't eaten yet. She has thrown up all of the liquid she has tried to take including the Tylenol. We are having a hard time controlling her pain as well. She took a little walk to the elevators came back and slept for 3 hours, woke up, went potty and went directly back to sleep. She wakes up because she is hurting.
As the title of the blog suggests things are never easy around our household! Hunter is sick and hasn't eaten in 2 days. He threw up the night before Hannah's surgery. He has played some but not his fullest. He also can't be on the floor where Hannah is and so keeping him occupied is becoming more difficult.
My heart aches for all of these babies and children who have been here all day and have had no visitors or parents here. Several of them are under 2 years old. My nurses have to throw me out, I can't imagine not being here all day.
I got about an hour and a half to play with Hunter today. We found a little play area (not much) as I was telling him bye he said no momma. I told him I had to go help Hannah, he said no momma, no Hannie. His eyes were wide and he tried to get me to sit back down. I missed him so much, I know he missed me. There have been very few nights I have not put him to sleep, it so hard to be torn. Hannah says please don't leave me. Ughh!!!
As I have said, the rarest most bizarre things happen to us. Our hearts are heavy with the news we received today.One of the most difficult, rare heart surgeries will be preformed on Hannah on July 8th. I am not sure what God has in store for my beautiful daughter but I must remember she is also his beautiful daughter and he too loves her. As hard as it is to fathom he loves her more. I do know he has something in store for us, which honestly is scary for me. I know he is God and knows whats best but I am growing tired of the unusual, rare events that seem to plague our household. I know often he is teaching me I need to lean on him and not myself. I wish I could be more righteous and worthy but I would rather my child no go through this for any reason. Maybe another day I will feel differently.
For those of you who don't know- my son has one of the rarest disorders in the world. It is Alternating Hemiplegia. Basically, he has paralysis that alternates sides of his body. It lasts about 10 days each time, typically affecting the right side for 3-4 days, his entire body for 2-3 days and then the left side for 3-4 days. It cycles around every 25-30 days. He is 3 years old.
SPRING Hunter is doing good right now, and his language seems to be exploding. His favorite word is tootee,-which is cookie. He is being so precious. Last week a new doctor said if I didn't know what he had I would think he was very healthy. He looks great! Whoo Hoo.
I couldn't leave this out cause its just too hot!!! I have the best husband in the world. He is a great dad too. I couldn't do it with out him!! We were at the Asheboro Zoo and just couldn't resist this picture!! He makes me laugh all the time. He makes life fun.
FALL Well all that's left is Fall and I guess that's how I feel. I feel the chilly breeze coming while still feeling the warm sun shinning on my face. I am so thankful for that warm sun feeling. With all that said I do have a Peace that God has given, don't get me wrong my stomach is in knots and tears have melted down my face several times today. But I cling to God's promises to me. in particularly he promised while I was pregnant with Hannah Psalms 113:9 God maketh a barren woman to keep house and have many JOYFUL children. I know that seasons change. I also know God's Joy and he and his joy never leaves!!!