Conflicted Heart

God has been speaking to my heart so much today...he always does but I just took the time to listen today. Anyways, I have been thinking about all the hurting kids in the world and what I can do about it. There are kids sitting in foster homes needing a loving family, kids across the world in orphanages needing a family, kids in hospitals with special needs who no one wants waiting for a family, kids being sexual and physically abused needing to know what real love is all about, and babies being developed in their mommies wombs that want a chance at life but are being killed. My heart just feels broken today...not only for all these millions of kids but also what am I suppose to do about it? Right now I know I have enough to handle with Autumn but one day I know I should be taking a step to help these kids but do I really want to? Do I want to bring a foster kid into my home and expose my kids to a foster kids "issues"? Do I want to go through the process of adopting a child in Africa wondering if I really will be able to bring that child home and the cost of adoption? Do I want to take on welcoming a special needs child into my house so they will not have to spend their childhood in a hospital knowing all the work and sacrifice it takes to take care of these precious children? Do I want to pursue educating moms on why abortion is murder and the other options they have? Do I want to volunteer my time to love on the kids who have no clue what real love is all about? Do I want to just see the problems in this world, feel sorry for these kids, and then turn my back and not get involved? Honestly, the last option is what I lean towards. I like having a nice family where we are raising good children and teaching them to love God and other. I like my husband working so I can stay home to raise my kids and give them all the joys in life of having me there 24/7 for them. I like that we go to church and have lots of friends and family that we hang out with. I like that one day my kids will be grown and that James and I may be able to travel and see the world. Is that all that life is suppose to be about though? No...we are sent here to be the hands and feet of Christ. So, why do I not see all of us Christain families running to help rescue these kids? Imagine if we did and what a change would take place in society. Do I want to sacrifice what I want to devote my life to helping kids? Not really but God just keeps speaking to me about it. I have no clue what He wants from me and when He wants me to do something but it's something that sits on my heart often and that I just have to continually pray about. I just hate when God calls me to do things I don't want to and makes my heart all conflicted.

Wake up cry

Last night we had no night nurse so on those nights we just leave our bedroom door open as well as Autumn's. Her room is caddy-corner from ours. Anyways, I had my alarm set to wake up at 7:30am to give Autumn her meds. About 7:20am I was awaken by what sounded like a babies making cooing noises. I immediately jumped up and ran to Autumn's room to hear her crying!!! It was a raspy (not too loud) cry. We have heard her cry some before but never enough to actually hear from another room....she must of been really mad. Anyways, it was so sweet to be able to wake up to the sound of my daughter crying. The things I never appreciated in my other kids I cherish with Autumn.



Autumn can officially turn from her belly to her back. She's learned she really has to kick her leg up to get the momentum to turn. We are still working on the back to belly though.



She's getting REALLY good at pulling her vent circuit from her trach...on and off the HME. She loves when she does it and just smiles that big smile of hers while someone is running to her rescue. It's funny to watch her big brother see her pulling on her tubes and he goes over to her and tells her no using his sign language and while calling her by her first and middle name. He's such a good big brother.

Hebrews

There are many chapters in Hebrews that I just need to read weekly to keep me going because so much of it talk about perseverance through our journey. Our sermon at church this morning was about how we are all broken people but it's how we deal with the brokenness that can change us and those around us. Everytime I spend some time with "normal" babies I start to feel broken. I sometimes think I do fine as long as I don't go around other babies and that makes me just want to stay home and not get out. In that brokenness I am responding the way Satan would like me to....but I know I need to be around others and I need to rely on God to give me strength to get through those times that I feel broken. Some days I lose focus on God's plans through all of this and I let my own selffishness get in the way. Hebrews 12:3 reminds me to not grow weary and lose heart. I do sometimes question why those who are not Christ followers sometimes seem to not have the problems we Christ-followers have. Why if we are being faithful we have to endure so much? I then though take time to really look into their lives and I see emptiness and hopelessness. I may be broken but I have hope and fullfillment in my life. Things with Autumn may never change on this Earth but she will be perfect in heaven for eternity. I do not have the right to have the perfect life and for all things to go the way I want or feel but I do have the right to decide the way I will respond to those things. I have an obligation as a Christ-follower to show others that my life is not perfect and that I will be attacked by Satan but that I have a Father who loves me and walks with me through all my hardships. Yes, it sucks (sorry mom I used that word)that I have a baby with SB that has a trach and on a vent 24/7 and she's not having a "normal" life and that my life has been turned COMPLETELY upside down. It sucks that I can not take my baby with me wherever I want to go. It sucks that I have to rely on nurses to take care of my baby just so I can leave the house or take a bath. It sucks we can not do all the things we use to do. It sucks we have to drive 6 hours once a month for a week of dr. appts. Lots of things suck about this whole journey we are on BUT God does not promise me a suckfree life. He promises me that He loves me. He promises me that He will sustain me. He promises that there is a purpose for everything. He promises me that one day there will be no more suffering and that as long as I believe in Him and remain faithful to Him I will be with Him for eternity. I'm on this journey that I'm not fond of right now but I am choosing to trust in God every step of the way. I will continue to lose focus and stumble at times but I just have to keep refocusing so I will not grow weary.

10 months old

My baby girl is only 2 months away from her 1st birthday and I just want to scream "NO!!!" She's my last and with having a 10 and 5 year old I know how quickly they go from sweet little angels to kids with attitudes. I went clothes shopping for her the other day and seeing all the newborn clothes made me so sad. I never got to put those tiny clothes on Autumn so I feel like I was robbed of the first part of her life and I want it back. So, I'm trying to take in Autumn's touch and smell right now. I love the slobbery fingers that go from her mouth to grabbing my face. I love the fat cheeks and thighs that I just want to squeeze and never stop kissing. Why can't God keep them this age forever??? I remember being a mom for the first time and wanting Madison to hit all her milestones and was so ready for her to get to the next stage and she could not grow up fast enough. I then had my second and the pace was just perfect....I enjoyed him being little more but when I just had about enough of a stage he was moving to the next one. With Autumn I want to freeze her and not let her grow up. I mean I can't even remember Madison being a baby anymore and I know it will feel like I blink my eyes and it will be Autumn's turn to go bra shopping like her big sissy. Sheesh...I'm so not ready for my baby to be a year old. So, I will try to capture and cherish these last 2 months of her being zero (as Gage says).

Autumn has been doing great lately...she is now officially spoiled and acts more like a regular baby needing attention. My little baby that never cried now cries anytime anyone walks out of the room. She likes to be patted to sleep now when we use to just lay her in her bed, turn off her light, and walk out of the room and she was out. I blame all of this on "Gea" her day nurse--she ruined her. ;) Her breathrate continues to stay at either 0 or 6 during the day....around 10 during naps and 16-20 at night. She's learning something new just about everyday...she mimics well now...like sticking out her tongue when you do or making noises when she smacks her lips together. She also knows she can kind of gather some spit in her mouth and make a little noise with it. Everything still makes her excited and she smiles at everything. She is eating great and still not interested in drinking from a cup or straw. She is learning to pull toys out of a bucket and can wave bye bye. Her head control is getting better and we are working on teaching her how to roll over. She seems to move her legs a little now..not sure if it's reflexes or her though. She getting great at pulling and we are still working on pushing with her hands.

I really do not focus on her vent and trach anymore...I more accepting of it and not counting down the days until they may be gone. I'm able to see she's developing well while on it so I don't hate the equipment as much anymore even though it's still a pain to transport. I've decided I'm okay with it being on God's timing and not mine..he won that battle already. I do have down days every once in awhile but for the most part seeing how happy Autumn is makes me know everything will be fine no matter what. I do still dream of the day I will finally be able to hold Autumn for the first time without tubes and wires attached to her. To be able to swing and dance around with her without stepping on anything. The freedom to carry her from room to room with me...I KNOW that day will come but until then I will wait with patience and anticipation of what it will feel like on one of the happiest days of my life.

My 23rd Psalm

In the Disciplines Prayer Life this is an exercise I had to do about how I view my identity with God and how I see my relationship with him. I view mine as a hiker with their guide and I was to write my own 23rd Psalm about it.

The Lord is my guide, He leads me on His path.

He conducts my steps so I may walk according to His will.

He restores my strength when I become weary

He's always there to help me and will never abandon me through the valleys

Although the path may become difficult and steep to hike at times and I may feel lost,

I will fear no obsticles in my way because He is there to carry me through.

He is my stronghold and comforter.

You have prepared a journey before me that will reveal Your love and glory to others.

You renew my body to persevere and my blessings overflow.

Surely my journey will give you the glory all the days of my life

and then I shall sit at the feet of my Deliverer.

I can always look at this Psalm to remind myself of the intimate, special, and unique relationship I have with my Lord and how he guides me through all of lives ups and downs and how He always is there carrying me through each step I make.

Medical Issues

Man, these past 2 years have brought too many medical problems to our family. My grandfather had a stroke, my mother-in-law had a mini-stroke, Autumn was born with her SB and problems, my grandmother had a stroke, and today my father-in-law had a heart attack. The great news is that everyone made it through and is doing good. God is watching over us and showing us that He will provide when things are needed. He knows I could not handle losing any one of these special people in my life while being pregnant and dealing with the issues I've had to face with my own child. He has shown us so many miracles these past couple of years and people wonder if miracles really still exist....everyday. Thank you Lord for your continued faithfulness.

Funny Story

Another SB mom had shared this story on the SB mom site that I am on. She said that a lady working at McDonald's had told her that to help with her son's ankle weakness from his SB that she could rub baby oil on her son's ankles and feet every night and he will get all better. Oh, how that story made me laugh so hard. It amazes me how clueless people are about medical issues and how they innocently want to help you and try really hard but don't realize how dumb they sound with their advice. Glad to have a good laugh tonight though...like if it was just that easy and why wouldn't the doctors tell us about that great cure.

Videos

Here are several videos of Autumn and one of Gage (he was jealous that Autumn was getting all the video time and he is suppose to be the star around here so I had to get one of him). Anyways, I know there are many people who read our blogs that only get to see pictures and never get to see Autumn in the flesh so I thought I'd get a few videos of her doing a few things. My brother and I are working on a new website for her that I can update without his help to post new videos and pictures for everyone since on the blog I just post only a few. I will keep you posted on when the site is all ready to view. In the meantime.....enjoy my sweet baby girl (and crazy boy)!

Full House

These are my children for the next 3 days plus Autumn of course. My niece and second cousin are staying with us today through Saturday. We started the tradition last year to let the girls stay with me for a week each summer and then for the girls stay with my sister-in-law for a week. Luckily though I share my week with Nana so she had them 2 nights and I will have them for 3 nights. So, how do big families do it ALL the time? Man, just making dinner for 2 extra mouths my portion amounts had to go up..not to mention the extra dirty dishes and snacks. I also was trying to figure out when each kid had a bath last since they had been with Nana. It worked out 2 were due tonight and 2 are due tomorrow night..good thing since we wouldn't have enough hot water for all of them to bathe tonight. The great thing about having 2 extra girls is that everyone gets along most of the time and they keep other entertained. We also are babysitting 2 rats that will probably be ours to keep. A friend of mine is ready for her girls to give them away and has convinced them to let us babysit while they are on vacation but she's hoping the will not ask for them back. They are also great at keeping the kids entertained...mainly Gage though so he is not bothering the girls as much. So, it will be a fun-filled busy week.

Autumn update: She is doing really good. I turned her breathrate back to 0 on Sunday and she did wonderful but since then she's pretty much on either a 6 or 10. She also has needed some oxygen every now and then and at night. Not sure if this is from the weather changes or her shunt being a little backed up. As far as her development she is really starting to make progress. I think it has to due with having a day nurse who actually has the time to sit down and work with her as much as she will tolerate. Her head does not wobble as much when centered and still falls to the side some but not nearly as much as it did before. This week she also has started to bear weight on her hands when on her belly for a few minutes at a time and no one holding her arms to help her. She's still doing good with her 3rd stage baby food and I've decided to take it on myself to train her to use a sippy cup. She's really not interested in sucking it to come out right now but today was the first day we tried. I'm pretty much just letting her play with it but I want to see about getting her another swallow study done around 12 months old so I want to practice with her so she can get a hang of using a cup before we have another study done.

So, I'm praying now that Becky "Gea" will permanently move here to be our day nurse ALL the time. She's been wonderful for both Autumn and I. Except that she has now ruined my daughter's sweetness of being content just laying in her bed. She now cries anytime you lay her down or walk out of her room when she's awake. Gea holds her and loves on her so much that Autumn thinks it's her right to be held and have someone sitting in her room with her ALL day. Honestly, I LOVE that Autumn is getting all the holding and loving time she deserves but when mommy can't sit there and do it on Gea's days off she's gonna have to learn to entertain herself. It's been wonderful to get back some of my freedom to go when I want to and not have to plan which hour I need to get everything done once a week. Like yesterday...I volunteered at the church all day and then James and I ran to the pet store and out to dinner so it's nice that we both can be away together again and not have to take turns leaving the house. She's been a huge blessing to us so please join me in praying God's will is for her to be here.

Autumn's first 4th of July

We had an amazingly great 4th of July this year. It actually felt "normal" with Autumn for once. We were able to take her outside and let her enjoy the fireworks with us. A storm blew in early in the evening and the wind had picked up so I thought we would not be able to take her outside to join in the festivities but everything died down and we had a wonderful time. In the past our family get togethers included ALL of my extended family but as we have gotten older everyone is spread apart and have their own plans. We though still always get together with the Graham's and have a great time. I miss the big family gatherings and getting to see all of my family but having at least one other one there makes it great times. It was extra special this year that my brother and his family were able to come down and do the 4th with us.

Here is our July 2009 family picture.

(the dog belongs to my brother)

Autumn in her patriotic outfit


The cousins

My niece and nephew, Haley and Dean

Jordyn (my cousins daughter)

Madison and Gage

These 5 do alot together and are very close

Madison is old enough now to light her own fireworks and she had a blast.

Nana, Autumn, and Grampy enjoying the grandkids firework show

Gage doing a roman candle....

first year he's been old enough to stand and hold it with it shoots out the fireworks.

Autumn absolutely LOVED the fireworks. I was not sure how she would react and if the noise would bother her or not. NOT AT ALL!!! She loved the big ones and everytime one would shoot into the sky she would smile so big at seeing the night sky light up with color. She finally could not hang in there and fell asleep at the end but slept through the noise with no problems. It was a late night for us and I was completely exhausted when we got home....had a van full of sleeping kids we got to unload along with all of Autumn's equipment. James though stayed up until 4am so I could sleep without interruption...so nice since I had 4 nights in a role doing the night shift with Autumn (waking every few hours to check on her).

Next week will be a busy week...we started a tradition where my niece stays a week here and then Madison goes and stays a week with her each summer. Jordyn will be staying with us a few nights as well so we will be taken over with little girls but as long as they entertain Gage as well it makes it a easy week for me. ;) We are debating if we should try this tradition with the boys as well but neither my sister-in-law or I are sure if we want to take on both boys for an entire week...we'll see how they are about getting along when they get a little older. ;) Hope everyone had a Happy 4th of July and remembered how blessed we are to be free.

Our week

We've had a busy and fun week. Our OT suggested we start letting Autumn play in yogurt, pudding, and different textures for sensory therapy. So, we decided to try it out and she LOVED it. Here is her playing in some yogurt for the first time. This was our second week of having day nursing and I am loving it. How did I manage without it? lol I am getting spoiled now and have more time to clean and run errands and even get out of the house for our weekly playdate with Sarah and the kids. Thursday we went to the local Children's museum. This is the kids playing in the vet clinic.
Here they are doing the news....actually they were bored in this room but managed to stay there long enough for me to get a pictures. ;)

This evening we were invited out to the Chesnut Playa. This is my ex-mother-in-laws--in-laws place. Every summer she invites us and my parents and a few of her close friends. Since my brother and his family are in town they also came. This place is full of fun. I decided this was the perfect oppurtunity to get Autumn all wet in the pool.

They have lots of animals to keep us entertained. Camels, horses, donkeys, llamas, dogs, and a longhorn. The camels are super friendly and get up close and personal. I really wanted to get a picture of Autumn's reaction of the camels sniffing her but as soon as they saw her coming in her stroller they got scared and went away. If we started walking away they would come back but as soon as we ventured near they left so no getting up close and personal with Autumn.

Here is Gage finally brave enough to jump of the diving board and he did the slide as well but not as bravely.

We also tried Jell-O for another sensory session and I actually was able to get some video of her trying it out. Since my camera is broken I am borrowing my moms and hers actually lets me download and post the videos. Whoo Hoo! I'll have to do some more videos for everyone.

Our busy week will continue tomorrow for the 4th of July. We will be going out to my mom's house to spend it with family and I'm curious to see how Autumn will react to the sound of fireworks. We'll see if she likes them or not.

Helping out a friend

Hi everyone! This post is to get the word out for a friend of mine who is trying to raise money so her and her daughter can go on a mission trip to Liberia. She runs an adoption agency for Liberian children but this time she is going to help teach birthing classes for the women of Liberia. This is close to my heart because James and I have always wanted to adopt a child from Africa...maybe we still can one day but we will just have to see. Anyways, she is selling t-shirts for interracial families and having a raffle for a Liberian nativity scene. So, if you are interested in helping her please visit her blog at www.stepsestablishedbyhim.blogspot.com She has an amazing heart for Liberia and all the needs there so please take the chance to check out her blog. Thanks!