Baby Katie Beth Update

Author: Kevin Schlichter

Last February Melissa wrote an entry on Upstream Swimming about our daughter, Kathryn, and asked all of you to be praying for our family. Perhaps you’ve been wondering how that all turned out, so here’s a Thanksgiving update on her situation.

To recap, a few weeks before birth Kathryn Elizabeth (heretofore known as Katie Beth, KB, Kat, Kitty, Katie, or The Reason I’ve Been Super Angry and Not Sleeping for Nine Months) was diagnosed with ventriculomegaly, then born with congenital defects in her ears, nose, and mouth, and a couple of days later she was unofficially diagnosed with Zellweger Syndrome and tested positive for Human Cytomegalovirus (HCMV). Off the record we were told by one of her specialists that she had no more than six months to live—at the absolute longest. That’s when word started to spread. First our friends started to pray and word quickly spread to others in our church, then relatives, and then their friends and churches started to pray. We were getting cards, flowers, and e-mails from people we didn’t know all over the country telling us they were praying for us. And I don’t know why—I don’t know why He does anything that He does—but God answered those prayers in a way we didn’t expect.

Three days after she was born her ears had moved into a normal location and, although we had originally been told to expect difficulty, she was breathing and eating on her own. After a lot of blood samples, an MRI, and two months of waiting for genetic testing at the Mayo Clinic, her official diagnosis was made: Katie does not have Zellweger Syndrome—or any other known genetic defect. We had been praying for strength to get through the trial, hoping that the loss of a child wouldn’t ruin our marriage and that we’d be able to try again, but He had healed our daughter instead. She still has some brain damage and there may be other long-term effects from the HCMV, but so far she is doing well. In fact, she has been developing perfectly normally. She excels in her intelligence and fine motor skill tests at physical therapy (yeah, infant physical therapy) impressing her doctors with her ability to manipulate a pacifier into the correct position before putting it in her mouth, and her ability to hold her own bottle to feed herself. Kitty has been doing both of these for several months now. Her strength continues to lag, but not by a concerning amount and Robyn and I aren’t muscular anyhow. KB’s head is even a normal size—it was supposed to be disproportionately small as a result of the HCMV.

So this Thanksgiving we’re thankful for our daughter. We’re thankful that she’s here with us, but also for the experience—we grew as a couple and our relationship was affected positively by it. We’re stronger as a team; have a healthier perspective on certain things; opened up to each other and gained a level of intimacy we’ve never shared before. I wouldn’t wish an experience like this on my worst enemy, but I wouldn’t trade it for anything. Like everything else we do with God, it isn’t easy but it’s very worthwhile.

We’re thankful for our church family, friends, and relatives who supported us in very material ways. We fed not only ourselves, but at least one other family with the food that was brought to us at home and in the hospital. Our dogs were cared for, and we almost had our yard re-landscaped as well. Being around people like the Felkers pushes us to live our lives for God in tangible and meaningful ways. We’re thankful for the example you’ve all demonstrated for us.

Finally, and this is last because I want it to be remembered first, we’re thankful for your prayers. I don’t know why He healed Kathryn and not the other kids in the NICU, but seeing the People of God care for each other always encourages me immensely and provides the best witness I know of. So thank you for taking the time out of your day to pray for us, whom you’ve never met. You can’t fix everything, but you’ve made a difference to us.

http://kathrynelizabethschlichter.shutterfly.com/ 

Allison & Ashley: Two of my Heroes after Pregnancy

If you’ve been following my pregnancy series, you know my pregnancy with Caleb was challenging. I was very sick and in a lot of pain, but through the experience, God really taught me a lot. I have always led a healthy, and for the most part, physically pain-free life. This is something I have always taken for granted because I never knew otherwise, until my pregnancy. I understand now how incredibly difficult physical disability can be, and how thankful I should be for the good health God has given me. God’s heart is that we would be joyful in every circumstance (1 Thessalonians 5:16-18), and through my encounter with physical pain, he revealed it’s an area I have plenty of room to grow in.

An additional way the Lord grew me through my condition called pregnancy, was in granting me a deeper love and respect for people who have ongoing physical challenges. It was a theme I meditated on a great deal during my pregnancy, and am currently meditating on again as I re-live my pregnancy via this blog. Specifically, there are two people God has continually brought to mind who I want to tell you about. I love them both dearly, and after my comparatively short encounter with discomfort and pain, I appreciate them even more. I think most of us could probably learn a thing or two from them.

Allison

The above photo is of one of my best friends (who also happens to be my lil’ sis), Allison. At age 11, she was diagnosed with spondyloarthropathy, which is a rare form of juvenile arthritis that results in inflammation of the back, hips, knees, ankles, and eyes. It has no cure, and the pain cannot be completely relieved. She takes pain medication daily, has chronic pain in her knees and hips, and has had numerous stints with iritis which causes her to lose vision for a period of time.

Ashley

This second photo is of another one of my best friends, Ashley Harman, who I recently had the honor of bridesmaid-ing for in her wedding. She was born with Spina bifida, which was caused by a benign tumor that pinched the end of her spinal cord and weakened the muscles to her leg and bladder. Although she has had this condition from birth, it was not diagnosed until she was 15-years-old.

As a result of spina bifida, Ashley has not only experienced a great deal of physical pain/limitation, she has also experienced significant emotional hurt. One of the most heartbreaking aspects of her story is that growing up, she would often urinate herself at school because a symptom of spina bifida is a loss of bladder control. This occurred for many years and resulted in ridicule from peers and fewer friends throughout her childhood. She has had countless surgeries to repair the damage, requires a catheter every time she uses the restroom, gets persistent infections, and experiences chronic pain in her foot. Like Allison, it is something she has dealt with her whole life, and will continue to deal with for the rest of her life (unless God chooses to intervene, which I pray passionately for!!)

I cried as I wrote these last three paragraphs because Ashley and Allison are two of my absolute favorite people. Despite immense physical challenges and obstacles throughout their lives, they are such joyous and loving people. I never hear them complain about their pains, and I oftentimes forget either of them even have any physical problems until a severe symptom pops up, or they periodically ask for prayers of healing. They both have a strength and perseverance that is truly inspirational. I have learned so much from them about being joyous and giving glory to God no matter what “thorns” you’ve been given in life. I know they have already touched many through their lives, and will continue to do so. Thanks A & A for your impact on my life, you guys are my heroes…I know life hasn’t been the easiest for you and yet you still trust God with all your hearts.

P.S. I wouldn’t be a good older sister if I didn’t put a plug in for my sis right now. If you are single, Godly, and good looking (lol!), I think you should consider asking Allison on a date*. She is all the cool things I mentioned above, plus smart, beautiful, kind, and funny! I don’t think you would regret it 😉 Hahahahaha! Sorry Allison, already published this post…can’t go back now!

*Applicants must be male. Some restrictions may apply. Please contact me for details. Offer expires 3/16/2012. Void where prohibited. 

Baby Katie Beth

Last week a couple at our church gave birth to a precious little girl. Unbeknownst to them prior to her birth, she has a rare syndrome called Zellweger syndrome (or possibly another similar condition, tests are still being run). In either case, the prognosis is not good and she has been given between 6 months and 2 years to live. We have only spent one evening with this couple, but we have heard many praises sung about their character through mutual friends at church.

The reason I wanted to blog about this is two-fold. One, I’d like to ask all you who follow our blog to please take a minute right now and pray for them and their daughter, Katie Beth. Here is a picture of her (isn’t she so cute!? Look at all that hair!)

Secondly, (though we have yet to become better acquainted), I honestly haven’t been able to stop thinking about this couple since their little girl was born. This is partly because my heart has been aching for them and the pain they are surely enduring, and partly because, as we have been following their updates, God has really been doing a work in my heart through their response to the situation. I have been incredibly inspired by them and personally convicted as a result. Here are a few things they have written that have hit me like a ton of bricks:

-“[6 months to 2 years is] not as much time as we had hoped to have with our daughter, but we’re thankful for the time we have.”
-“On the way home we talked about how happy we were to be doing this together. There isn’t anybody else I’d rather be doing this with…we thought of couples we’ve seen pass through our community that might not be able to handle this type of stress in their life. But we’ve been in training for five years now, and, at least so far, our spirits are strong and we’re as in love as ever. God works in mysterious ways I guess.”
-“Your prayers are working, and we’ve been blessed to see God working such miracles firsthand.”
-“We continue to have hope that, no matter what happens, we can raise her up in the way that is right as an act of worship to God whom we thank for the wonderful opportunity to care for one of his children.”

Do these words convict your heart like they’ve convicted mine? Put in their situation, would you have a similar God-centered and positive outlook? As I read those words and spend time thinking about this family, God continually brings to mind all the absolutely ridiculous and comparably inconsequential things I complain about. Watching this family deal with such a difficult and devastating situation with such love and thankful hearts, has swiftly knocked me upside the head and put things into perspective for me. It reminds me of the verse in 1 Corinthians 1:27b that says: “God chose what is weak in the world to shame the strong.”

Their clarity of mind and big-picture perspective in the face of such unexpected adversity moves me. I only pray that if I ever experience anything like this that I would have a similarly joyous heart. What a wonderful example of a couple who trusts the Lord and His plan so fully, and is truly living out 1 Thessalonians 5:16-18 “be joyous always; pray continually; give thanks in all circumstances, for this is God’s will for you in Christ Jesus.” This is not to say they aren’t grieving and experiencing pain (I’m sure they are), but I believe they are able to remain uplifted because they are grounded in their relationship with Christ and ultimately know their lives rest safely in God’s hands.

I’ll leave you with this prayer that has been on my heart:

Jesus, I pray that you would love on this family right now. I pray for healing and nothing short of a miracle for Katie Beth. Continue to give this family so much peace, hope, and joy. In times of sadness, let them know and experience your intense and passionate Fatherly love. Give them the strength to love little Katie Beth with such fervor. You have paired this couple with this precious little girl for a reason, and I pray that you would continue to use this family to bring glory to Yourself.

Jesus, please give me an ever-increasing heart of gratitude. Help me to maintain an eternal perspective and help me to remember to praise Your name in all circumstances. More than anything, thank you for loving me so much that you would send your son to die on my behalf. I am humbled and in awe of your never-ending and unconditional love.

[An update to this post was published on November 22, 2012. Click here to read it.]