Chronic sorrow....that's not me, is it?

http://susanellisonbusch.com/chronic-sorrow-in-parenting-a-child-with-a-disability/

I saw my friend posted this article the other day and I found myself offended at the title. I thought, "This is so not me. I am joyful. I choose joy every day and I am not sorrowful." But I have  to admit, as I read it I began to see some truths.   As I did I found myself shaking my head in agreement. I didn't mean to, but these were all feelings I could relate to. These were all things I have experienced in the past two years. But "chronic sorrow", that is not me. I am not sad day in and day out. I really am joyful and I love seeing Annika defy the odds. But I guess if I'm truthful there is  part of me that is always hanging on the edge, scared to see what's next or what we might be missing out on. I guess if I am truthful this article describes every emotion I have had. So what's my point in sharing this? Sometimes I show up to work crying for what seems like no reason at all. Sometimes I see a baby hug his mom and smile and tears fill my eyes. Sometimes other kids move on to the next step and we are celebrating back at the first step. I thought by sharing this others might understand when the tears come or when a little extra support might be needed. Maybe someone else is out there and doesn't know how to put words to their feelings. Maybe sharing this will help someone else like it helped me. I am still coming to terms with the words "chronic sorrow" but it does help me understand my feelings.

Anger

Looking back at some of my other blogs is making me even more angry at myself for how I am feeling, but sometimes I just feel angry.  I don't want to and then I get so upset because I am feeling that way, but it just continues as a vicious cycle.  What makes me think I deserve it any other way?  Sometimes the frustration of seeing all that is going on around me is just more than I can handle and I just want to scream.  I get angry because my crying baby can communicate what is wrong when she just cries and cries.  It doesn't happen often, but when it does it just breaks my heart.  I get angry because Madelynn dreams about her future, and having kids of her own and then adds, "And Annika will live with us too so we will also have her."  I love that it seems so natural to her thinking but I hate that that is what she thinks about for her future.  She doesn't see the late night conversations with her sister, trips to the mall, or even sharing the joy of having children together.  No, she realizes that Annika will be like one of her kids.  How can I feel so proud and so angry all in the same moment?  

I have to speak to other women in about a week about being a special needs mom and I am not even sure I know what to share some days.  Do they want to hear about the triumphs?  Do they want to hear how I have to choose joy everyday?  Do they want to hear that I have to constantly NOT do the mental math of what my child "should" be doing compared to other kids?  I am really not sure I am qualified to even be sharing sometimes.  I am happy and I do love and adore both of my kids, but then there is just this underlying anger and I am not really sure what to do with it.  I would want more than anything to curl up in my dad's lap and just cry it out, but that too is out of reach.  

But then the anger fades.  There is laughter.  A smile that could melt the most angry heart.  There is a look that says I love you, even if I may never hear the words.  I grasp onto that and cling to it as if it is a life preserver trying to pull me out of this anger and despair.  I can feel the storm in my heart calming and I remember that the things of this life don't matter.  The things of this life don't last.  God has a perfect plan and HE IS FAITHFUL, even though I am not.  HE IS FAITHFUL, even when I doubt.  HE IS FAITHFUL, through all my struggles and fears and anger.  I know no other way....

  

Troubleshooting

I think parenting often feels like troubleshooting.  You try a punishment, you try a reward, see how it works for you kid and then go back to the drawing board.  Things never quite seem black and white and what works with one doesn't seem to work with the other.  Well, when you have a child with special needs I feel like you can multiply the amount of trouble shooting by about 100.  

In March Annika had her surgery to fix her severe reflux and throwing up.  I was glad we had reached this conclusion to have this done and knew it was going to help her.  She has done so well over the past few months.  She has hair (which seems to be the first thing most people notice), she is trying so hard to crawl, she is make more and more vocal sounds every day, and she does throw up less.  

That being said, she is still having these awful "gagging" episodes.  I really don't know what else to call them.  It is not like she is gagging on something in her mouth it happens further down in her stomach, but that seems the best way to describe it.  I feel like I am constantly troubleshooting to try to figure out ways to improve this occurrence.  She is not supposed to be able to bring up milk, but of course we are over achievers, and she is able to bring up milk through her surgery.  It is so awful to watch and takes so much energy out of her.  So, each day I am back to the drawing board just trying to figure out how to help her.  Feed her faster, feed her slower, wait until she has been up for awhile, spread out her feeds.....and the list goes on and nothing seems to help.  She is on some medicine that should help but we aren't there yet.  

Some days I just want to have a relaxing day.  I don't want to problem solve, I don't want to juggle our schedule between therapies and Dr. apts, and I don't feel like smelling like barf.  But this is just not the way it is.  So, find peace and joy in the little thing around you.  Last night Annika was laughing hysterically.  I am not totally sure what she was laughing at but she thought it was the funniest thing ever.  And right there, that is why I will continue to juggle, schedule, and doing laundry.  

  

If your heart was crushed, what would be revealed?

Looking at these pictures just cracks me up.  The three of us are so blessed to have each other.  I can't imagine not having my sisters.  We may have not always gotten along, but we have always loved each other.  I remember wanting to have friends over in the summer time and my mom, who was probably tired of having others over, would say, "You don't need anyone to come over, you have your sisters."  I'm sure it was annoying at the time, but she was right.  
Over the last few weeks I have been thinking about the three of us and how much we have grown over the past 5 years (yes, we have gained and lost a bit of weight, but I mean in our faith).  I think back to the night in the hospital with dad and the countless people who had told us, "There is just something different about your dad," we knew what it was all along.  As I held is chubby, Papa Bear hand I could feel the callouses and he just had a peaceful look on his face.  As I stood there and watched the numbers count down I felt my heart literally crush inside my chest.  I couldn't even imagine what life would be like.  Here I was pregnant with my first baby and I just lost my hero in life.  It was physically hard to breath at times.  None of us are the same since that night, but I can say, as I look at my sisters, we are much stronger than we used to be.  Our heart was crushed and our true faith came out.
As many of you know, the last year and a half has been a bit different than I had planned, and once again I found myself in a situation where I was not sure I would be able to breath and get through it.  As I heard the doctor say that he thought Annika had a genetic disorder where she might never walk, talk, crawl, say "I love you" and may other things, I felt my heart being crushed inside my chest from the pain of all the things I thought I would miss out on.  Even as I write that I feel a tightening in my chest that makes it heard to breath.  I know I am not the only one in my family who felt their heart crushing as we imagined the future.  But once again, as my heart was crushed my faith grew stronger.  I had developed a trusting relationship with God over the years, so during this time I had strength that could only come from Him. 
Over the past 5 1/2 years I have seen the three of us grow closer and closer together, even if we were farther apart in miles.  When I call my sisters with anxiety about what the future holds or just frustrated about life, they are the first ones to say, "Let's pray right now."  And in that moment my heart feels lighter as I turn to the one, my Savior, who is stronger than all my fears, all my worries, and my sadness.  My sisters have helped me to remember what is really important in life.  Together we have challenged each other to work at becoming the women of faith we were created to be.  It is not an easy road and many time we find ourselves in a sea of self-pity or anger, but, guess what, I have two sisters to pull me out where I am back on the solid promises of Jesus Christ.  
So, the question is, if your heart is crushed what truth would be revealed?  What is inside your heart and what would you turn to in that time?  We have to learn to trust before we can have strength in Jesus.  And we gain that trust by daily spending time with Him, knowing His characteristics so that in those heart crushing times we will have complete trust and strength in who He is.  There is no magic pill to get more strength; it comes from trusting God and everything He has in store for your life.  I am thankful for my sisters who always build me up, encourage me to rise above my situation, and give all the glory to God.  Like the old hymn, "Tis so sweet to trust in Jesus, Just to take him at his word, Just to rest upon his promise, and to know, "Thus saith the Lord!"

What would be revealed in your heart if it was crushed by some sort of bad news?

"The joy of the Lord is my strength" Nehemiah 8:10

Set apart for a great purpose

I have known from the very beginning that God had great plans for our Annika Grace.  The moment I received the news that she might have a genetic disorder (ok, it may have taken me a couple of moments to wrap my brain around everything) I knew God had a reason for placing her in our lives and I could not even imagine what was in store for all of us.  As we started to plan for Cri du Chat awareness week I have been blown away by the love and compassion we have seen from our friend, family and community.  

We started with Annika Hatch day at the baseball game last week.  The night before I felt and overwhelming anxiety in my chest and I prepared to put my tiny, 15 pound little girl out there in front of everyone and I was just not sure I could handle it.  Luckily God has surrounded me with people who constantly remind me to turn my eyes to Jesus in all circumstances.  So, as soon as I called my sister and started to freak out she stopped me and said, "Let's pray."  Right then and there she prayed for all that would hear about Annika and the plans that God had for her and I remember that it was not about me.  He is greater than all my fears.  The ball game was fantastic and we brought awareness to the rare disorder.  

Gayle and John on Annika Hatch Day

Madelynn and Chris at the baseball game

I have LOVED seeing the pictures of everyone in their Team Annika shirts.  When we first got them Madelynn wanted to wear it everyday.  Again, I am touched by the amazing love that has been shown to us.  My sister and Beau created these shirts to show their love and support for the niece they love so much and it gives me great pride to wear my shirt around and have people ask me about it.  I can't wait to get all the pictures of people in their shirts and make a book to show Annika all the lives she has touched and how loved she is.  Many people wanted the money from shirts to go toward Annika and because of this we were able to pay for her entire hospital stay (at least the bills we have received so far) in full.  Again, I am so grateful and humbled buy the love people have shown us.

On Sunday May 3rd we had a walk here in Bloomfield to raise awareness for Cri du Chat and we had such a great turn out.  It took my family a bit to get started and as we rounded the corner and began walking up the street and I saw all of our friends and family there to show their support I just felt my heart fill with love and thought, "This is just one of the small ways God is using Annika's life."  I can't even imagine what is to come.  My absolute favorite part of the day was sitting around on the grass at the fire station with all of our friends and just enjoying life.  God used her tiny life to remind us the importance of friends and the importance of slowing down and taking time for each other.  I can't even say thank you enough for all people have done for us.  My heart is full.

The love of a daddy and his little girl

Sitting around and having fun

Big Sister Madelynn having fun

Nothing like a good Popsicle after a walk

The Bloomfield, NM 5k for 5p- Group

What a great idea....A Legacy Bible

I just think this is an amazing idea and I wanted to share it with all of you out there.  I love writing in my Bible and looking back at the lessons God has revealed to me over the years.  After my dad died I studied out of his Bible for a while and it was as if he was right there with me teaching me lessons.  There was so much comfort in seeing his handwriting and reading the words he had written.  One of the blogs I follow shared this the other day and I wanted to pass it on to all of you.  I am thinking about getting a Bible and studying out of it for the year and then passing it along to Madelynn.  Then I couldn't decide what to do about Annika.  Of course I want to leave one for her, but then I found myself asking those questions I don't like to ask myself.  "Will she be able to read?  What will her life be like?  How much will she function on her own?"  I hate it when these thoughts come into my head because they depress me and scare me all at the same time.  But then I thought, "Why wouldn't I want to leave a legacy for Annika?"  Even if someone is taking care of her, wouldn't they be reading the Bible to her?  I sure would hope so.  So, I plan to get another one for her and study out of that for a year and then save if to pass down to her.  
I hope you can use some of her ideas to leave a truly lasting legacy for your kids also.  
Click the picture to take you to her post.

Time-Warp Wife - I am Leaving a Legacy Letter

Here is another resource if you are a bit more artistic than me.

Bible Journaling: What I've Learned and what I use...

Peace

It is hard to believe that I went round and round trying to decide whether or not to have Annika go through surgery when I see now how amazing she is doing.  I mean, don't you just want to squeeze those chunky thighs? :) She has gone from 13 pounds 6 oz on the day of surgery to 15 pounds 3 oz exactly one month later.  She has more color in her cheeks, her hair is growing and she is just so much happier.  
I have had people ask me, why did you wait so long to have the surgery?  She could have been gaining weight much sooner.  Well, I don't know about you but I find it difficult to make the choice to have my daughter sliced open (her scar is from her sternum to her belly button plus the tube) even though I knew it would probably help her.  I had to know that I had done everything I could be for I chose this.  God gave us the peace we needed for this decision when it was time to make that choice.  

Here we are a month later and she is doing amazingly well.  In the past if she was sick she would hardly eat at all.  This has not changed.  She has had a cold this past week or so and has not wanted to eat at all.  Well guess what little girl, you don't have a choice.  When she couldn't eat we would just hook her tube up and feed her.  That simple and she didn't loose an ounce.  It was great and took a ton of stress off of me.  

I know this is a scary choice if your child is having to go through this and I am sure some parents out there have some not so good stories, but for us it was the best decision for our child and I would hope other parents would consider it if needed.  She had the fundoplication surgery and a G-tube placed.  She can still take baths and she is rolling over and trying to crawl.  She can still go swimming this summer and she is already trying to crawl.  We leave her with babysitters, and have had to train them on how to tube feed her.  We even leave her with teenage babysitters so we can go out.  As long and they know what to do in an emergency (and we live in a very small town and are not far away) then I feel comfortable still living life.  Her challenges are not something that are going to "go away" or be "healed" so we still have to live our lives and have her part of it.  I think this is very important for all of us to function and normal as possible.  Plus, it allows others to be part of her life and enjoy her sweet, wonderful laugh and smile.