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Merry Christmas from the Steeles

by | Dec 20, 2013 | Children, random life

2013 was a VERY full year for the Steele family.  It was marked in the middle with 2 big surgeries and hospitals stays. We are grateful that God brought us through that time with his amazing Grace.  We received a ton of love from our friends and family.

Erica progressed in her midwifery schooling and looks to graduate in 2014!

Kennady continued to defy the odds and turned 12 years old!  Jude turned 9 and Avery turned 7!

In a few days, Erica and I will celebrate 15 years of marriage! Wow! That seems to be a landmark anniversary. We will probably celebrate modestly with a one night stay in San Antonio or something like that.  We are not in the position at this point to take a big trip.  (too much schooling and not enough finances) But, that is quite alright. We have made do for 15 years with a modest style marriage. To God be the glory for that.

Our church has continued to be a thriving place where people are meeting God and growing in relationship with Him (and each other).  It is an honor to serve in San Marcos.  We have incredible people here that cook amazing Mexican food! Tamales and enchiladas.  Homemade salsas and tortillas.  We are blessed with a great university and tons of students. Our river is one of the best/cleanest in the country.  Our church property is home to ministries that meet regularly for people of all ages, gender, socio-economic backgrounds.  It is humbling to realize that God uses us for such a deep and meaningful work.

We are honored to call so many of you friends and look forward to hanging out with you again.  Let’s meet up around a cup of coffee or a plate of warm food.  We want to connect and walk together with you.  If you live out of town, then let’s email, chat, and Facetime soon!

Merry Christmas from The Steeles!

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Journey Journal Part Five

by | Dec 10, 2013 | Children, How to deal with pain, Journey Journal

This is the fifth installment in a series of posts straight from our journal (handwritten).  When we first received the difficult diagnosis for our daughter (still in the womb), we immediately started journaling.  Click here to start reading Journal from the beginning. Here is what we said:

DAY FOUR – September 28, 2001 – (Erica)

A Prayer…

Trying to take it all in.

That would basically sum up what I am doing.  Yesterday was the hardest day. The shock started wearing off.  Denise (Phillips) called and talked to me to see how I was doing.  It was so good to just talk to someone.  She said that we have been given the peace that passes all understanding.  It is so true.

You have given us such peace in what would otherwise be a traumatic situation.  I thank you, Lord, for your strength and I believe whole heartedly that this child and this situation is going to bring you awesome glory.  Thank you for allowing us to be a part of that.

It is so hard and so easy at the same time.  Please continue to draw Robin and I closer to you and closer to each other; so that we can find our refuge and strength solely in you.  Let us see this through spiritual eyes and not the eyes of man.

Thank you for sending us such abundant support through family and friends.  Thank you for a healthy beautiful baby girl.

<3 E.

2013 Commentary
Unfortunately, this is the last installment from Erica for quite a while.  She wrote a few posts and then didn’t write again until mid-October (a month later).  I (robin) continued writing and will post those in coming days.  God answered her prayers about her marriage. He used this situation to bring our relationship closely together.  The divorce rate for Special Needs parents is a lot higher than for parents of typical kids.  We give God the honor for what He continues to do in our life and marriage.

Read the next Installment

Journey Journal Part Two

by | Dec 6, 2013 | Children, Journey Journal

This is the second installment in a series of posts straight from our journal (handwritten).  When we first received the difficult diagnosis for our daughter (still in the womb), we immediately started journaling.  Click here to start reading Journal from the beginning. Here is what we said:

DAY TWO – September 26, 2001 – (Erica)

A Prayer…

Yesterday was one of the most shocking days and trying days I have faced.  The doctors diagnosed this beautiful baby you have given us with Hydrocephalus.  I am, of course, completely broken hearted.  I feel like every hope I had and every plan I had has been re-directed, but at the same time I feel so much peace from you.  There is so much to think about.

How do you keep pressing on and…well…I know, because you are making it so clear.  We just need to trust you.

Thank you for being my complete strength.  I turn all of my cares over to you. Thank you for giving me such a strong and wonderful husband that has looked to you for the answer from the minute we began this journey.

When we were in the doctors office, we both started hearing the song, “Whose report shall you believe?”  It was so encouraging.  Thank you Lord for your perfect grace and comfort.

I <3 U.

Read the Next Day

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Kennady’s Story Keeps Changing Lives

by | Nov 6, 2013 | Children

Erica and I were given the incredible opportunity to speak to several classes at a local high school (Lehman High).  Betsy Slemmons teaches several different courses at Lehman and was looking for parents to share their experiences with her childhood development classes.  Unfortunately, the day we were to speak, Erica had to go to a long birth and missed the sessions.

It has been almost 20 years since I graduated from high school and I still get nervous walking the halls.

I spoke to 3 different classes throughout the day.  I told our story and tried to cover as many bases as I could.  They asked some great questions too.  We talked about her birth and diagnosis. We talked about the doctor’s proclamation of ‘no meaning‘ (which really fired them up).  We covered our difficulties, struggles, laughs, insurance, blessings, Kennady’s love for rap music, and many other topics in between.

I encouraged them to be an advocate for those who have no voice.  Speak up for those who can’t speak. Don’t laugh at ‘short bus’ jokes or drop the ‘r’ word.  I left encouraged, thinking that we had connected on some deep levels.

Then, I received this letter in the mail. WOW.  It seems only God can motivated people to give up their possessions, and He did.  Love is strong and makes a difference.

 

slemmons

Really Good Medicine

by | Jun 26, 2013 | Children, hospital

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Can’t wait to see her up in her chair and laughing again!

Kennady had her second surgery Tuesday morning.

Robin and I (Erica) were both shocked when they were about to take her back and told us it would be 4 hours.  For some reason, we thought this surgery would be shorter than the last.

They took her back and we headed out to the coffee shop upstairs for some breakfast.

The waiting for someone in surgery can be many things

1.) Nerve wracking

2.) Boring

3.) Sleep inducing

4.) A good time to catch up on random stuff

5.) A good time to talk to your spouse, uninterrupted

Seeing as Robin and I had done a lot of catching up the past several days, and I really don’t like sitting and staring at the walls, I decided to go shopping around the corner.

This is where my martyr level started to drop.  I knew I shouldn’t leave because immediately, this gives my husband the lead, but..I decided to let him keep the lead temporarily so that I could possibly get some new clothes.

It is a little strange leaving the building while your child is in surgery, but it sure did help the time pass a little faster.

We finally got the page to come back to talk to the doctor 6 hours after we left her with them.  Then, we got back to the waiting room and waited a loooonnnggg 35 minutes before the doctor came in.

She came in and said something along the lines of, no part of this is easy with your daughter.

Basically, they had to redo the initial part of the surgery during this second part.

They had to remove the catheter in her spine that was placed initially, and put in a new one,  then they were able to place the pump and hook the catheter up to it.

So the plan was that she would not have to lay on her stomach again after the second surgery, but because of the incident with the faulty catheter, she is back on her stomach for 3 days.

This is extending our time here by a day or two.  We are hoping to be out by Friday or Saturday.

Robin left to go back to San Marcos to teach a class tonight and sleep in our bed at home.  He is officially losing his Martyr status.  I however, will be staying up her tonight and smothering our girl with hugs and kisses, and sleeping on the hard couch.

Ok, ROBIN breaking into the blog now! I have officially lost my martyrdom status to my lovely wife and will completely enjoy spending the night at home tonight!

Oh, the fun we have.  Thankfully, God’s grace includes a package of humor and joy.  We don’t just get through by plugging along.  God gives us space to pick at each other and enjoy the difficulty.

A couple of nights ago, we had to go eat dinner and we missed the surgeon’s check up visit.  When we returned to the hospital, the nurse said, “the surgeon wants you to call her on her cell phone so you can talk about Kennady’s status.”  Erica quickly responded, “Robin, you talk to her.”  I was SHOCKED.  I couldn’t believe that she was actually going to let me talk to the doctor.  Erica always takes the communication role because she spends so much more personal time with Kennady and knows so much more about her.

Later, I said, “Erica, I almost fainted when you said that I could be the official spokesperson of the family and talk to the surgeon on the phone.”  She softly stated, “I was just trying to submit to my husband.”  I burst out into hysterical laughter!  I was worried that the rest of the hospital floor would be disturbed, but we both laughed so hard about her sarcasm and then we laughed about the fact that we were laughing so hard about her submitting to her husband.  Anyway, for those that don’t know us, please see this as a sign that we have a completely healthy relationship.  We love each other dearly and are so thankful that God’s grace fulfills us with joy no matter the ‘life climate.’

Then our mouth was filled with laughter, and our tongue with shouts of joy; then they said among the nations, “The Lord has done great things for them. Psalm 126:2

Having Faith for the Moment

by | Jun 25, 2013 | Children, Choices, hospital

The past 5 days have been more emotional than I (Erica) expected.

We have been preparing for this surgery for the past 3 months or more and had felt peaceful about moving forward.

Kennady has gotten much tighter and just generally uncomfortable due to her high muscle tone.

The decision to have the surgery was not one we took lightly.  We finally came to a point when we felt like her quality of life was diminishing and could be maintained, or improved, with the Baclofen pump.

During this time Robin and I have discussed the surgery and all of the possibilities between the two of us, with our family, and with close friends.

As we usually do, whether in the case of a major surgery, or major sickness, we prepare for the fact that Kennady may not survive.  We all come to the end of our lives at one point or another, some slowly and gently, others tragically unexpected, and many others in between.

However, life with Kennady, always has that feeling a little closer to the surface for us.

During the time leading up to this surgery, I had mentally felt prepared for whatever might happen.  I had peace about the decision to move forward with the procedure.  We had met with the doctors and nurses about all of the aspects of surgery, how that this was very invasive and the risk was substantial.

It is hard to tell you how many thoughts come to mind while making these decisions.  Decisions on life and death and the weighty things in life.  Whether it is right or wrong to extend our lives at all.

These are not small things given to us.  They are great, and taken as such.

Our greatest goal and drive is to honor God in all we do.  With every decision, every word spoken, every breath breathed.

Often we fall short of that goal, reflecting on what we can do better in the future.

The weight of the surgery felt light on the whole to me.  I felt very peaceful about it, and up until a couple of days before, I really had no major concerns.

I simply had faith that God was in control and giving me the peace that I needed.

Thursday morning during the surgery, Robin and I sat around and talked and laughed (a lot).  We discussed lots of things, none really relating to Kennady and the surgery.

After the doctor had finished the surgery she came back to talk to us.  As you know, from the blog Robin wrote, the doctor’s words stunned us a bit.

I was so emotional when the doctor said it was the “this was the most difficult catheter placement I have ever done”.  I felt somehow that I wasn’t prepared for that, and that somehow that peace I had felt was not authentic because I was not feeling completely peaceful in that moment.  As if some how, my lack of strength was a reflection of  God not providing what I so completely believed he had.

You see, in my mind, the surgery was going to go off without a hitch, or be very heartbreaking.  There wasn’t really a middle ground.

When I talked to people shortly after that, I could barely get the words out without being choked up with tears and emotion.

As the day went on and we talked with doctors, family and friends, God began to reveal the truth about that moment.

The picture I began to see was so beautiful.

God prepares our hearts, gives us peace, and is with us all along the way; but the peace we feel in those moments, is not that we will handle the situation with strength, a certain emotional calm, without fear or even with joy.

Those moments of peace come from a faith that God is in control, regardless of what I might be feeling in that moment.

We can’t be prepared for things we have never walked through.  Each moment of this life is individual, no two moments alike.

I could never be completely prepared enough for the loss of my daughter, I can never be completely prepared for what the future holds.

The peace that I felt before crossing that bridge and many others, was a peace that, whatever may come, God will provide the strength I need for that moment and all the moments to come.

His grace is sufficient.

That’s it.  His grace is more than enough for every moment I live.

I may not know what that moment will be like or what it holds, but he is enough.

2 Corinthians 12:9  “My grace is sufficient for you, for my power is made perfect in weakness.”

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