Wednesday, November 28, 2012
Today, my little sister Hannah turns twelve.
Speaking for myself, every November 28th since the year 2000 has been a big moment. Even though, today, I'm not exactly sure how I should feel.
I just don't know.
You see, part of me is reminded that I can now celebrate exactly twelve years with the most precious gift God has given to me. I can celebrate that she survived her first four months with her severe heart problems, her first year, and the at-least-a-dozen surgeries she's had since then (I haven't had one surgery - emergency room once, and that was it.) She's made it this far. And again, speaking for myself, for someone with all of Hannah's conditions to reach the age of twelve is a big feat in of itself. After all she's been through...twelve years? My goodness. What a wonderful twelve years it has been.
The other part of me feels a growing apprehension with each 11/28 that goes by. Sometimes I'd even go so far as to use the word fear. Each year, it is a dark cloud on the horizon that seems to grow a bit more and more, blocking out the sunlight I had when I was younger and didn't understand what words like handicapped and medical procedure meant.
The other part of me wonders...what if? What if this is my last year with Hannah? What if this is the last birthday gift I give to her? What if come next November 28th...she's gone?
I mean, it's not as if we know she's not going to make it to her sweet sixteen or anything. The doctors at Mayo have never given us a clear life expectancy for her. But you never know. Hannah has had so many of those quick-rush emergencies in the past. One of them was even a brain tumor (I'll tell you that story at another time). One morning something inside Hannah could go wrong or stop working altogether...rush to the emergency room...drive down to Mayo Clinic with not a minute to spare...operations, procedures...and then she leaves us. Like a leaf dropping from a tree branch.
I just don't know.
So today, I'm going to give her the Dora the Explorer movie I bought from Best Buy, and I'm going to buy her a balloon, and I'm going to tell her over and over that it's her birthday. I'll wear something pink because that is her favorite color. And I'll try not to think about whether or not this could be Hannah's last birthday on Planet Earth. I'll just celebrate today for what it is.
Twelve years with Hannah. Definitely worth celebrating.
Not my will but yours be done, Lord. Let the rest of Your plan for Hannah's life not interfere with my and my family's selfish tendencies and apprehensions. Thank you for giving me these twelve years - whether or not You intend for more to come.
Sunday, November 25, 2012
"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle."
When our daughter Hannah was only a few months old, and even before her birth, it was evident to me that her life had a divine touch on it. The way she almost wasn’t conceived in the first place, the way God prepared our hearts to receive her, the miscarriage that precipitated her conception, all the prayers during the pregnancy on her behalf - it all seemed point to something very holy. Then - her birth defects, her very early social graces, the way people rallied around our family preceding her heart surgery in 2001, the way we realized - after the fact - that her initials were H.I.S. - it all created the sense (at least with me) that something extraordinary indeed was going on.
I didn’t know quite what to expect. Maybe she would become someone like Joni Erickson-Tada, who turned her handicap into a ministry. Maybe she would graduate from High School at age 16, college at 18, and become a missionary doctor at 20. Perhaps Hannah would become some kind of evangelist like Katherine Kuhlman, who could look into people’s souls with piercing eyes, speak divine truth into their lives, and heal their illnesses with a prayer.
But as we watched expectantly over the next couple of years, it became apparent that these things would not take place. As her development fell further and further behind, we prayed, had her anointed with oil (as if to really get God’s attention), and took her to Mayo Clinic. She’s been officially diagnosed with Turner Syndrome with Cerebral Palsy, and accompanying anomalies - medical terms you’d have to look up in the dictionary: Scoliosis. Hemi-hypertrophy. Tortocollis. Pulmonary stenosis. Her Tetralogy of Fallot (hole in her heart) was surgically corrected in July of 2001. Now, at age three, she’s far behind “normal” in her development. She can’t sit alone, feed herself, roll over, walk, talk in words, or use her hands. By standards of ignorance or insensitivity, she’s a “retard.” By “normal” family values, she’s a “weight” or a “drain.” With four surgical procedures in three years, her medical expenses have cost us, friends, family, and Fortis Insurance Company quite a bit of money.
Yet there is something about Hannah that’s unusual, compelling, extraordinary - holy. If her siblings pull our pet cat Pewter’s fur or ears, he bites as if to say, “Enough!” But let Hannah do the same, and he never retaliates - never. Hannah sometimes just stares at a new face, but sometimes she lets fly a captivating smile. Early in her physical therapy, Sue took her to the local hospital, which was also frequented by the neighboring nursing home residents. Following a Hannah smile, elderly people in wheelchairs frequently made the comment, “She just made my day.” How did she know which face to smile at? Others have commented that just the sight of Hannah’s apparent joy brings them perspective on their personal problems, because here’s Hannah, unable to “have a life,” and she’s more joyful than anyone. Hannah’s father, who sometimes gets a little too wrapped up in his work, only has to sit in the rocking chair with Hannah for a few minutes upon arriving home, and nerves calm, stress drops, peace rises. Hannah’s life is something of a light to us “normal” folks.
I suppose it is possible that Hannah’s difficulties are a result of someone’s sin. It’s possible that her conception too closely followed the miscarriage. But I choose to see it as the late Rich Mullins might have seen it. Rich wrote a song about a little girl named Madeline Smith, who was born with severe defects. A line from the song: “God gladly bends just to hear Madeline when she prays.” When his sister gave birth to a boy with severe defects, Rich called and congratulated her, “I’m so proud of you!” She was incredulous. She didn’t understand; she thought she’d been cursed. But Rich said to her, “Don’t you understand, that God trusts kids with special needs to parents who will give them special love?” 1
That was the statement, heard some two years before Hannah was born, that prepared my heart to receive Hannah’s light.
Monday, November 19, 2012
This blog is for our twelve-year old, Hannah.
Through this blog, we hope to give her a voice and share her story with the rest of the world.
None of us have ever been the same since she entered our lives.
Our hope is that, through our stories and thoughts and prayers about Hannah, you too will be touched by her story in some way.
To start off, we'll introduce you to her.
The following is from an article one of us wrote for the local newspaper in 2001, when Hannah was about a year old...
After my daughter, Rachel, was born in 1998, Sue and I planned on having no more children - for a number of reasons. We had planned a sterilization procedure immediately following Rachel’s birth, but the procedure was just cost-prohibitive enough at the time to postpone it. So, we did. It was several months after that, at the end of particularly enjoyable day with Rachel, Ellie, and Jesse, that I remarked to Sue, tongue-in-cheek, that “we should have another one.” I expected something like, “no way, Jose’.” But I was not prepared for Sue’s response:
“Are you serious?”
I wasn’t…until that moment. We began to pray and ask God for guidance, and we both felt led to expand our family by one more head. It was then that I began to get the sense that God was involved in this in a very unique way. There were no dreams, no burning bushes, no visits from angels - just a sense to go ahead with a fourth. So, we did. And Sue became pregnant in early January 2000.
A month later, the sense took on a new tone when Sue miscarried. It didn’t seem like a huge loss to us emotionally, and we didn’t talk about it a whole lot outside our home. But suddenly we were questioning our wisdom from God. We prayed a lot. We talked with our doctor. And, we still sensed a green light to go ahead. So, we did. And the sense of the divine increased when many people began to pray for this new unborn child. I can’t recall that any unborn child was prayed for as much as Hannah was - our church friends, our oldest two children, people in the community, out-of-state family, and of course, Sue & I. Prayers ascended daily on behalf of this little one. On top of that, her big brother Jesse wanted to be present at the delivery - his idea. Our doc was cautious, but his conditions were met, and Jesse helped me coach and comfort his mother through the labor and delivery. And he passed with flying colors as a supportive big brother, complete with his Bugs Bunny scrubs.
And here was little six-pound Hannah, with a slightly deformed right hand, and….what? A heart murmur? We had to take her to Grand Forks for an echocardiogram before we ever took her home. And the result: Tetrology of Fallot. What was that? A poem? Oh - she needs open-heart surgery? I see. Oh, and yes, let’s be thorough and run her through some genetic tests. The tests revealed that Hannah has something called Turner Syndrome, the effects of which we won’t know until she’s older. Possible problems with kidneys, fertility, stunted growth, and other heart problems. We questioned our family doc, the pediatrician, and the Mayo Clinic specialists with the natural question, “What caused this?” Their head-scratching answer:
“We don’t know; you did everything you were supposed to do. It could be hereditary, but we can’t nail down a cause or explain this medically.”
The next natural question(s):
“Did God not hear all the prayers?“
“Did He forget to bless Hannah?”
“Did we somehow sin and bring these things upon her?”
Again - it might be wishful thinking, or my preacher’s imagination, but I think God has blessed Hannah - and us - in some kind of unique way. Snicker if you want - “Donn’s watched ‘Prince of Egypt’ one too many times.” Could be. But at this point in time - on this day after Hannah’s benefit supper at the church building, where an army of volunteers set up, cooked, brought tables & chairs, went on the radio, and put up posters around town - I think that God is doing something extraordinary. From all over the community, checks are showing up from people that I didn’t tell about this - a bank, a neighbor, an acquaintance, the post office - to help with the upcoming surgery expense. It was estimated that over 250 people showed up yesterday to eat soup and give money to the cause.
Hannah herself is the most social and communicative baby I’ve ever seen, even though her slow growth and development is evident. For someone who wasn’t planned to be conceived, she sure seems set apart. For someone who was sacrificed for by her unborn miscarried brother or sister, she in her short five months of life has generated as much faith in me than any sermon I’ve heard or preached. And, here’s something we didn’t even realize until we filled out forms for her heart exam: her initials (Hannah Isabel Schroeder) spell HIS. For a child who seems “ordinary” in the scheme of the world, she sure has a string of peculiar, perhaps holy events surrounding her life. Coincidences? Maybe, but I don’t believe so. I may be way off base. I may be speaking foolishly as a prophet who knows not the future. But I believe that God is up to something really cool in Hannah’s life. Call it coincidence if you want; I’m calling it divine, as in Romans 8: 28 - “and we know that in all things God works for the good of those who love Him, who have been called according to His purpose.”
Time and eternity will tell.