Her Story Extras

I asked Aaron to help me with this. He and I had a lot of the same ones. Elleigh heard us talking about it and she said she wanted to include some things as well.

What we have learned the most:

Aaron:

We do not understand what we do not have to deal with. This is so true. Until you have actually walked whatever situation someone is in you can never fully understand.

We can deal with more than we ever can imagine. I could not agree more. I have a hard time choosing what I have learned the absolute most but this definitely ranks close to the top. Every time I am uncertain or fearful about some situation I am reminded that we really are much stronger than we think we are (through Him).

God truly is good!!! All the time!

You learn by asking questions-of doctors and of God.

God's plan IS perfect and ours is not.

More about the ear than I ever thought possible! AMEN!

Regardless of all her problems, Sallie is one of the happiest people I have ever known!

Cameron:

People just like you and me are faced with situations every day that they never imagined they would have to face. I am so much more sympathetic and aware of the trials others face.

Life is far from what we dream it to be. This ranks high as well. I laugh at how I used to imagine how things would be. Praise God I have been humbled so much! We learn so much in the trenches.

To go along with what I said above, I think as a family we have learned to change our focus. Life is not about what we have or what we can give our children as far as things go but it is about celebrating life and the victories in life and teaching our children everything we can about the Lord so that when life doesn't go as planned they can handle it.

That having friends and family who care so deeply for you is a major blessing and not something everyone has. There are so many special people who have walked and continue to walk this journey with us and we thank God for placing each of them in our lives. We are always touched by the people who are always so good to check in on Sallie just because. It is very comforting to know that she is on the minds of so many people who continue to pray for her and us.

That God is our ultimate comforter.

God can use someone so small and fragile to touch and change so many lives (especially this mama and daddy).

God is in control and we are not!

To look for the good in every situation and realize that there are others who are struggling as much or more than you.

To be thankful for the opportunity to take care of such a special child as Sallie. Thank you God for her life and for allowing us to be a part of it. SHE IS WONDERFUL!!!

Things we wish we could change:

Aaron:

My initial reaction

Others view of Sallie

Though I would love to take away some of her pain, I would not change anything about Sallie. This may sound strange to some but this is the way we both feel. She is perfect to us. No, we don't enjoy the things we have to put her through but she is who she is and we love her for that. I feel kinda guilty saying this because I never want anyone to think I am saying we benefit from her issues but God has used Sallie to get us where we are today. That little girl impacts us every day.

Cameron:

Aaron touched on others view of Sallie and of course I feel I need to elaborate. Most people are very intimidated by Sallie and we wish so much that they were not. She often gets left out because others feel they don't know how to deal with her. This is heartbreaking for parents. Sallie loves to be a part of everything and we try and understand when she is not included but it is so hard.

I wish I had never cared what other people thought. I wish it had never bothered me for people to wonder why she had aids or why she doesn't talk or whatever. People are just curious and most mean well. I wish I never felt like other people were looking at me and trying to figure out what I did to cause these issues. I am so thankful to be delivered from these thoughts and feelings. I take her wherever and am proud of her no matter what.

This one is a praise and something I wish I could change. As parents we often get so caught up in our children's appearance and or shortcomings. Now let me stop and say I do not mean our kids should go around dirty and with dirty clothes or have unhealthy lifestyles and us not care. If you know me, you know I do not mean that! I am saying that I think it is so important for us to teach our children that we are all different and that the world is made of people with all kinds of strengths and weaknesses and that it truly is what is on the inside that matters and not the little things on the outside that the world thinks is not perfect. I am thankful that our children will grow up knowing that it is OK to not be "perfect."

I wish Sallie would not get so upset about going to the Doctor. She is getting better but she just really has a hard time with it. Once again, breaks our heart.

That everyone would realize what a blessing ALL children are!

Elleigh:

People to treat Sallie better

People not to stare

People to understand her situation

People to not think she is not intelligent

People not to leave her behind

People to include her

I type Elleigh's list with tears. We forget sometimes how much Sallie has changed her life. Siblings of special needs children face so many challenges. We are adults, but to a child it seems so unfair that their sister would have to go through these things. Elleigh gets so upset when she feels Sallie is not treated like everyone else and it is heartbreaking and so sweet all at once. She is such a blessing to us and to Sallie and I know that Lizzie and Millie will be as well when they are old enough to understand.

A couple of months ago there was a post on Bring the Rain which for those of you who don't know is the blog of Angie Smith whose husband is Todd from Selah. They lost their fourth daughter just hours after birth. Todd was actually the one writing the post but he was saying that when they first were told that there was a problem with Audrey and they thought it was something like Downs that he prayed God please do not let her have Downs. Later they found out that it was not Downs but appeared to be more fatal and he said at that point he prayed Lord, please just let it be Downs. That pretty much sums it up. Trials cause our perspectives to change so much. I have said a million times and I will say it again. God gave her to us, has allowed us to keep her for this time, and we will do anything for her. When I get caught up in the difficulty of the circumstances, I am reminded that everyone doesn't get the chance we have.

Update: We saw the geneticist today and we both really liked her. She was very down to earth and great with Sallie. Basically, she said that it could be either a glitch in fetal development or a chromosomal issue. She said there were some chromosome tests that looked really deep into the chromosomes that would not have been available when she was tested at birth. She seemed to be very much on the same page as us concerning not just trying to give this a name. Our goal is to find out what we can to help her most and she said either way what we were doing would not change. We took her on to get the testing done when we finished at her office. If it comes back that there is an issue with her chromosomes then they will test Aaron and I to see if one of us has that issue as well. If that was the case, then the other girls would be tested to look at their chromosomes as well. The reason for all of this is so that they have all the information they need at the point they begin to have children. If her tests come back normal, then we will know that it is isolated birth defects. We go back in a month to discuss the results. Please continue to pray. I was very calm today and we are very pleased with how the visit went. She quickly picked up on how smart Sallie is. That made us proud! Also, she was telling us about the tests and she said, "You can wait a week or so if you want since it's about to be her birthday." I thought I would cry. She got it! She really understands! Our hearts break the most when Sallie is sick or going through something at special times, like her birthday. She deserves a birthday break! Her birthday brings a flood of emotions for Aaron and I each year. The Dr. made a really big deal with Sallie about her upcoming b-day. We have other appointments about once a week for different issues for the next month so please pray for those visits as well. WE LOVE YOU ALL!

Thank you for allowing me to share her story. I cannot begin to tell you how much this has helped me. Also, as a testimony to doing what God tells us to do I will share this quickly. I got an e-mail from my friend Shannon concerning an old friend of hers that she has recently re-connected with. Angela (the friend) reads Shannon's blog and saw our blog listed on Shannon's. So, she came over and read Sallie's story. Her son is 7 and has some similar issues to Sallie. They actually live in this area and she and I have e-mailed back and forth and she has already been very helpful to me. I pray that somehow I can be helpful to her as well. It was not by chance that I shared all this and that Angela happened upon it. God is always at work!