Tuesday, September 4, 2012

The truth

It is the Lord Who goes before you;
He will march before you; He will not fail you or let you go or forsake you;
[let there be no cowardice or flinching, but] fear not,
neither become broken
[in spirit - depressed, dismayed, and unnerved with alarm.]
-Deuteronomy 31:8 AMP

I have tried and tried to start this post, to restart this blog actually, a million times now.  Quite literally, I'm afraid, over the course of the last few months.  It is easy enough to update when Keegan is in the hospital or when we have concrete answers.  Unfortunately, those answers are hard to come by.  They always have been with Keegan and still are, even though we are getting closer to them.  I dread answering the question, "how is Keegan doing?"  It seems impossible to answer at times.  I dread almost as much when someone asks how I am doing.  That also seems somewhat out of my grasp these days.  So, I usually answer "oh, ok" in person and have been avoiding any attempt to answer them on the blog just as much.

Instead of avoiding everything, I think it's time to start over.  The first and foremost goal of this blog was always to be a chronicle of Keegan's medical history.  Even if no one ever read it or understood some (or even most) of what I wrote, we wanted to have an accurate recounting of Keegan's medical issues.  It kept our family and friends apprised of Keegan's condition from the very beginning, as Gray actually started the first version when Keegan was but a few hours old.  It has helped us prepare to take him to Boston and to Cincinnati and to refresh our memories from trying times when doctors asked us for detailed information about his history.  It allowed those near and far to bless us with the power of prayer on Keegan's behalf for the last nearly five years, and in rarer circumstances, it helped connect us to other families on a similar road.  Here and there, I felt the need to share my personal feelings and insights from this life also.  Partly because I felt it may help other heart/transplant/medically-complicated families, partly because it helped me process the complexity of the situation, and partly because at times I desperately feel the need to explain to others what this journey is like.  Whether that be challenging, rewarding, crushing, enlightening, or simply tiring.

However somewhere along the way, I started to feel the pressure of the "blog world" creep in to my "medical journal".  This pressure that extends from blogs to Facebook and beyond.  To portray a perfect life, a perfect family, a perfect home, perfect crafts, perfect food, etc, etc, etc.  Shiny, happy people everywhere you look.  Keegan's health and developmental state often keep us from doing many normal activities, even simple crafts at home.  We don't have a spare dime to spend on making improvements to our house or taking trips, and I am certainly the furthest thing from a gourmet cook.  On the flip side, I didn't want to be another family with medical/special needs that lives nothing but that world, all the time.  Nor do I have any deep philosophical truths to share.  I'm honestly not sure my brain is capable of even shallow truths these days.  I suppose I felt at some point that if I didn't have something well-written with flawless photos that was (a) perfect, (b) creative, (c) brilliant, or even (d) mildly comprehensible to share, I might as well not share anything at all.

Remembering that this blog was not to serve my own purposes but Keegan's is the main reason I am recommitting myself to updating.  It is a disservice to him, both medically and for his own knowledge, if I fail.  Keegan deserves to have this information about his medical battles in order to understand where he has come from and to make future decisions about his care.

If I am to be brutally honest with myself and any reader who happens here though, I do have the selfish reason of writing as therapy.  Congratulations, you are now my new therapist!  God and everyone else knows I don't have the money for the real stuff.  As I felt that perfection pressure increasing, so did my inability to cope constructively with just about every aspect of my life.  I am pretty good at soldiering on and keeping a straight face.  It served me extremely well once upon a time in a courtroom.  (Remember that little piece of history where I was a somewhat successful trial lawyer?  Yeah, neither do I.)  The truth is that behind the facade was the crushing feeling that I was failing at absolutely everything.  Failing at taking care of Keegan and making sure that I was giving him every possible advantage.  Failing at making a home, at being a wife, at being a mom, at meeting Audrey's very distinct needs compared to her brother's.  Failing because I was not earning a living to contribute to our financial situation, failing to repay the debt of a law degree that I worked so hard to receive.  I dreaded getting on the internet and seeing others tell of successes that seemed so far away to me.  And then, well geez, I was even failing at keeping up the blog!  The endless cycle just kept going.

I wanted to break free of it, but I felt bound by the looming uncertainty of Keegan's remaining genetic labs that we were due back last week.  How could I commit to changes if with one test we could be thrown into seeking treatment for a new diagnosis or starting a new round of drugs that would change everything.  If the tests confirmed a form of Severe Combined Immunodeficiency Disorder (SCID), we would be pursing the possibility of a form of bone marrow transplant.  If they did not, we were hoping that the research labs being performed by the rheumatology group would give us guidance for a stronger immunosuppressant that would help us wean Keegan's steroids and prevent flares, but also make him even more at risk for infection.  How do you pull yourself by the ol' bootstraps if you don't know what tomorrow is going to bring?

Unfortunately, we learned last week that the lab in Canada that was supposedly working on the genetics never received the blood we sent in June.  12 weeks of waiting utterly down the drain.  I refuse to go into details here.  Suffice it to say that policy at Children's has been changed so that this mistake will not happen again to another family.  If Keegan stays stable for the next 10 weeks or even stays able to fight flares as successfully as he has recently, the only harm caused by the lab error will be more anxiety from the wait.  We decided to cautiously tackle a painstakingly slow steroid wean so that the remaining wait is not a complete loss.  One milligram per month, starting last Thursday.  Currently, Keegan is back to what we have come to call his baseline.  I hesitate to call it stable, as the slightest upset can capsize the whole boat, but right now, there is nothing going on that we can't handle at home.  Some days are worse than others.  This weekend was a rollercoaster ride; Keegan was extremely tired and had a 36 hour rise in his heart rate and blood pressure.  Not good signs for him, but he ultimately came back to more comfortable numbers by last night.  He is powering through his therapy sessions and making small gains each week.  He is developmentally very similar to Audrey and started showing some classic two-year-old behaviors that are very encouraging.

The truth though is that the anxiety of the unknown and the grief of an unrealized dream for my family robbed me of joy.  I admit and acknowledge that, and I am confessing it here in order to keep myself accountable in the future.  It is not the first time in the last few years that I have succumbed to this worry and fear.  It just seemed more acute this time.  It felt as if there was more on the line with Audrey added to our family and being on the cusp of a five-year quest for answers for Keegan.  The truth is that anxiety stems from a need for control.  (A constant source of issues for me since childhood.)  But I was never in control in the first place.  This life and purpose belongs to God and no other.  If I know that I have placed my trust in Him, if I truly believe that He will make these struggles glorified, then my anxiety is a waste of energy that could be put elsewhere.

People often quote the adage "God will not give you anything you can't handle."  Any person who has been told that as a means of comfort knows how it can stab at your heart.  But the missing ending of that phrase is that He will not give you anything you can't handle if you place your trust in Him.  He doesn't expect me, nor want me, to shoulder this burden on my own.  That is the truth.  One I am putting great effort into remembering daily and am renewing a desire to seek daily.  If you stuck with me through this post, I can't thank you enough.  Heck, if you stuck with me through the last few months, I really owe you.  I hope that I can live up to my promise and desire to post here more regularly.  For Keegan's sake and mine.

And that is definitely the truth.
The praying spirit breathe,
The watching power impart,
From all entanglements beneath
Call off my anxious heart.
My feeble mind sustain,
By worldly thoughts oppressed;
Appear, and bid me turn again
To my eternal rest.
-C. Wesley


sleepy_mama said...

You and your children are beautiful inside and out. Please try and be gentle with yourself.

Misty said...

You truly are an amazing woman, quite likely more amazing as Keegan and Audrey's mom than as the best trial lawyer! Moms with "normal" lives often feel overwhelmed, so it would be abnormal if you didn't considering the extra requirements to be Keegan's mom. You have done a great job of not only chronicalling Keegan's medical history along with the challenges you face trying to make the best decisions for Keegan (and your family when possible). You also share the reality of the big and 'not so big' struggles including the hard decision to keep a brother and sister apart to protect one when the other is ill (and the guilt that is there regardless of which child you're with--usually/always Keegan--during these trying times). I just want you to know that I have checked this blog often over the past two weeks to check on Keegan, you, and your family. It's okay to say I don't know. Then again, though, that acknowledges 'loss of control', which as you wrote, you never really had anyway. Take care if yourself!! Misty

Stacie said...

Good for you, Maddie, for writing this. I am so proud of your transparency in this post and I want you to know that I am praying for you tonight. And still want to meet up sometime soon. :)

The saying, "God will never give you more than you can handle" bugs me so much as well. Mainly, because it's not Biblical. He gives us more than we can bear all the time -- because, like you were saying, He never intended for us to go at it alone. The Bible actually says that God will never TEMPT you with more than you can bear. See 1 Corinthians 10:13. Very different.

Hang in there, friend. One day at a time. Hugs to you tonight.

Much love,
Stacie Smith

Cody said...

Maddie you continue to express your heart along with Bug's continuing challenges. Your honesty reflects courage, fortitude, tenderness and strength. I unfortunately understand grieving the childhood Keegan does not yet experience, the family dynamic that others seem to enjoy, the fear of his health getting worse .... family and friends constant reminders to take care of yourself, when you are running on adrenalin just trying to keep up with all the appointments, treatments, insurance ..... stress of the finances.... it is very overwhelming and emotionally exhausting. God gave you Keegan and through his challenges you have found a calling. From the time he had his transplant you began advocating for children and families. You and your family are modeling altruism, supporting heart transplants, Children's Hospitals, various childrens programs and mentoring other families that are going through these struggles. That extremely bright and articulate trial lawyer has been able to shine light on areas that have needed improvement, challenge the status quo for improved communication between specialists and families, challenge the health care professionals to utilize new methods of treatment. Most importantly you have been a voice for all those families that do not know how to advocate for their child. It is not an easy path, but you are touching and improving so many lives. I'm very proud of you Maddie, you are a wonderful mother. Keegan is blessed to have you in his life ... you are a blessing for many.

Stefenie said...

{{{hug}}} I think you are an amzing mom. It is hard at times reading those "perfect" blogs and not longing to be perfect too. I get that but truth be told we are all pretty gosh darn perfect in our own way. We all have qualities that make us the best at who we are.
Thanks for being so honest and sharing your heart through this post. Praying for you and your little guy. Prayng answers come soon!

Anonymous said...

I do not know you personally, but I feel like I do because I have been following your blog for a while. Thanks for all your updates and I do try to pray for all of you. I don't think anyone could handle this situation any better than you have. You show so much of yourself by just being honest about your feelings and that is to be ADMIRED! Praying that God will bless you and all of your family in ways that we can't even begin to understand.

Peri said...

You are a wonderful mom and I am amazed at the grace you show in your journey. God bless and you and your sweet family are in my prayers always.

Anonymous said...

Maddie, God bless your little heart. I want you to know that you bless me in so many ways. I think 4 different times in this post alone, you made the hair on my arms stand up. You speak for so many. I have a chronically I'll child, maybe on a smaller scale, but I fear those fears, hurts those same stinking hurts, cry those same years, and fight those same emotions. I have a tremendous amount of faith. But sometimes I need a little encouragement, too. Ever since I found your blog, I have followed it faithfully, your strength and faith encourage me. I also feel compelled to check on Keegan, I want to know what to pray for, and how you all are doing. I want Keegan to know, that part of his story is part of Braydon's story. The part really that may have saved his life. I owe Keegan for that. So much gratitude, that I check your blog often for updates. I'm proud of you for sharing the good the bad and the ugly. I too, grapple w my selfish need to present perfectly, and have only recently been able to use my sons name, image and the word autism in the same post. Denial much? Ugh. But my faith grows stronger, and I am just beyond grateful to you. The Harrison family remains in my prayers. I am praying tonight specifically for your encouragement. Yours, Nicole Alexander

Megan Bartlett said...

Today, you ran.....

Anonymous said...

“People are like stained-glass windows. They sparkle and shine when the sun is out, but when the darkness sets in, their true beauty is revealed only if there is a light from within.” Elizabeth Kubler-Ross

“The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles but to live in the present moment wisely and earnestly.” Buddha

Remember: Perfection is based solely on perception.

Susan said...

Your son's story is amazing. Hard to believe all he has been through....what a tough guy! And you are obviously doing a great job as difficult as it is. Remember to take care of yourself too. Thanks for sharing!