Home, Sweet Home

As most of you know, the heavier and longer Keira gets, the more we feel the need to move. Five years ago, we got a lot of bang for our buck with this classic split level, but now it's about the worst floor plan we could imagine. There's no escaping the stairs to come and go from the house and the wheelchair is too cumbersome to bring indoors at all. 

Long story short, banks have recently changed their rules about how they authorize mortgages to people with student loans. Given that we both took the plunge and got our doctorates, you can only imagine what our debt looks like. The amount that the bank approved for us would have made it difficult to find something that would work. I wasn't hoping for a nicer house. I'd have even taken a smaller house. Jeff was joking that Hasbro would need to reconfigure the game Life, since now it may be more accurate to have a postgraduate education OR buy a home. 

Anyhow, we've been contemplating our options for a couple of years when my parents said, "Why don't you buy our house?" Whaaat? This is the house my parents have lived in for 40 years! I've never even imagined them living anywhere else. 

The house is a single level, 1970's ranch style. My dad has built on to it quite a lot over the years, so now it is complete with 4 bedrooms, a study, a living room, and a family room. 

There are things that make this home particularly noteworthy. It has a detached painting studio for my mom. But most impressive is the large and luxurious back yard. It is beautifully landscaped and cared for, complete with a gazebo, rock wall, brick archway, and cobblestone walk. For many years, the garden alone was Mom's full time job. If you have taken a psych class at NNU in the past 3 decades, chances are very good that you've seen it in person yourself. 

I think the first thing I said when Dad offered this option was, "Are you serious?" then, "but you know we can't take care of that yard!" He is well aware that we struggle to get our lawn mowed every week, let alone weeding or pruning! He insisted that he and Mom had discussed it. They would continue to take care of the yard and Mom would continue to own the studio. He proposed that they don't need a house that big anymore and that they'd buy a little house nearby. 

I was certain that Mom and Dad's house would afford us the space and outdoor living opportunities that we would not be able to afford if we went at it alone. Not only that, our kids would stay in the same school district and we'd cut a few minutes off our commute to the office. It was a very intriguing idea, but I wasn't sure Jeff would be up for it. Lo and behold, he was more excited about it than I was! 

Fast forward a few months, and things are moving! When I get home from my trip, our current house will go on the market. My parents have actually convinced a homeowner across the street to sell his home, which is currently a rental, to them! Mom and Dad will be moving out and we will be moving in in August!!

I have given my parents about 100,000 opportunities to back out of this deal. To say this is generous of them is the understatement of the century. They know that downsizing would be prudent, but I don't want to rush them. But by and large they are excited and it's so stressful, they say there's no going back now! It's been a whole family affair as Janie, my mother-in-law, aka realtor of the year, has been lending her services to ensure everything goes as smoothly as possible. 

Mom is staying awake at night, redecorating her new home in her mind. Similarly, I'm brainstorming ways to make the new house my own, not just the house I grew up in. I like the thought that my parents will stay linked to this house, most likely for the rest of their lives. I imagine that I'll become the defacto host of many family dinners and holiday gatherings. My parents don't want to think about it, but as the child who will be most likely to care for them as they get older, it brings me great comfort that they will be right across the street. Barring any extreme circumstances, this living situation should suit us all for a very long time.  

Above all, this home will be great for Keira. One level, room for her wheelchair and other equipment, and move-in ready. In the future, we'll put a ramp out the back food and extend the patio. We'll remodel the master bath to make it an easier place to bathe her. Someday we'll probably widen some doorways. Not to mention, Grandma will live within a baby monitor's reception away!

I'm anticipating feeling much more settled and peaceful about our living situation on the other side of this endeavor. Big summer ahead of us! It will be a lot of effort to get two families moved and settled. It could potentially be a little rough on Keira and the boys. If anyone is interested in helping us (my parents included) with moving and/or painting, etc, we'd be happy to have you! 

What To Expect When You're Expecting Severe Neurological Impairment

Palliative care is the newest specialty that Keira sees. It's been a good experience. We go to the clinic every couple of months and sit down with a doctor and a social worker. They ask us a lot of questions about what our life is like and what challenges we have. As far as I can surmise, palliative care is about making life as simple as possible for patients and the families of patients who have severe problems that aren't expected to get better. So far, there hasn't been much that they could do for us that I haven't already done, but the support has been nice. It's a little like having a case worker who has more pull because he is an MD. 

Talking to others about palliative care has been strange. Most people, including other specialists (!) have never heard of it. I guess it's a relatively new specialty around here, particularly as far as kids are concerned. 

I've been meeting fairly regularly with the moms of the other kids in Keira's Friday group. Their kids are more or less as functional as K and see many of the same doctors. I was a little surprised that none of them had been referred to palliative. All I can conclude from that is that her doctor perceives Keira to be more fragile than her friends. As disheartening as that is, it hasn't bothered me too much. The truth is the Keira is more stable now than she has ever been, so I think palliative was established as a "just in case."

All that said, I am so incredibly happy about palliative because of the one real thing they've done for us so far: they gave me this book. 

Ok, so the title is a little daunting, but this book was a breathe of fresh air and I practically read it from cover to cover. 

Never before, in all of my research, had I come across a book that seems to be written for me. It's like the equivalent of What to Expect when You're Expecting for parents of typical kids. 

It starts of with a carefully and sensitively worded introduction and moves on to a list of common specialists a kid with severe neurological impairment (SNI) might see. Each of Keira's specialists are listed there as if it were written about her. 

Then, the chapters hit on the highlights of our struggles and concerns: sleep problems, seizures, nutrition and weight gain, retching and vomiting, pain...

The chapters address how to make decisions and prioritize needs. It discusses the most up-to-date treatment options and medications. 

Needless to say, I was thrilled. I honestly felt like this book could be life changing for Keira and for us. Published since Keira's birth, I was unsure that her doctors had seen it. It's published by a very credible source and written by a doctor who specializes in these kids. So, I've shared bits and pieces of the book with various practitioners and they have been very receptive. I was most excited about the parts having to do with feeding. The book suggested a height to weight ratio goal that was much smaller than what we had been striving for by following the CP growth chart. The GI doc gave us his blessing to actually cut back on Keira's feeds and the results have been marvelous. She's only being fed an amount  that she can easily handle and thus is retching and vomiting significantly less. Furthermore, we've been able to discontinue her nightly drip feed, and so she sleeps much better. And guess what? She had GAINED ounces at her last weigh in!  It is so wonderful to have the ok to finally relax a little on the one issue that's been troubling us since day one. Woohoo! 

Inclusion: Part 2

To begin, we had our sights set on a couple particular families in the church. One of them was...well, us! 

The timing seemed perfect. It had recently come to our attention that some nursery workers were feeling...well, timid, I guess, when it came to working with Keira on Sunday mornings. No shame! I would, too, if the tables were turned. I saw this as the perfect opportunity. I volunteered to spend a few weeks staying in the nursery with Keira. That way, each worker, as they went through the rotation of volunteers, would have an opportunity to observe how I interacted with Keira and how I included her in the nursery activities. 

The results would be threefold: First, more people would have the opportunity to learn how easy it is to care for and love Keira. 

They would experience Keira as a person, which could potentially open up their perceptions of disability. This could lead to better care for Keira but potentially many others. And finally, this in vivo training could be a model of how to introduce and acclimate other kids/teens/adults with unique needs in our church. 

The first Sunday left me with very mixed feelings. Acknowledging that the milieu certainly changes from week to week with different volunteers and different children, the nursery workers seemed a bit standoffish. It felt like they were relieved to have someone there to watch K and not overly eager to learn more about her. I got the impression (which, again, is likely overstating it), that without me, Keira would be left to sit by herself in her chair in the corner unless she started to cry. And in that case, we would be called in to soothe her. 

Keira and I got to work that morning. I gathered her up, along with another kid or two, and read them books. I pushed her chair right up to where the kids were whizzing by with their dolls and cars and balls. I enlisted a youngster to roll a ball back and forth with us. I sent K down the slide. I scooted her up to the table at snack time. I even let one little boy help push her syringe when I was feeding her ("Keira's mouth doesn't work like yours, so she has 2 belly buttons! Isn't that a silly way to eat?") I held her hands and did the motions with her during singing time. I explained to the kids (loud enough for the grown ups to hear), "Keira doesn't talk, but she loves it when you talk to her! Keira can't walk, but she likes to watch you play. It's so nice when you bring her a baby!"

Though I didn't see much change in the investment of the workers, per se, the kids themselves amaze me. One little girl blesses me every week when I hear she's kept Keira in supply of baby dolls. Last week, when I went to pick K up after church, all of the kids were playing freely except for one little boy, who was crouched and snuggled right up next to K in her bouncy seat. The attendant reported that Keira had begun to cry, so he had marched over and talked to her until she started smiling!" Oh, sweetness. All from a little guy who himself often struggles with being left in the nursery. I'm so thankful for these little friends and try not to worry that they'll distance them self from her as they grow older together. 

My somewhat dissatisfying experience in the nursery was paralleled at the same time with my efforts to hire a part-time caregiver. The gal that we hired in January graduated from NNU and moved on, so once again, I was in search of someone to watch Keira from 3-6, 4 afternoons per week. 

Me? I though this job was cake! $10 per hour to watch this ray of sunshine, to keep her company and hang out with her, with full license to study and talk on the phone on the job. Not so much. I posted the job on Facebook, care.com, and the NNU job board. I advertised on a couple of list serves for people who do this kind of work.  I enlisted several Professor friends to be on the lookout for students who might be appropriate. 

I DID receive some calls. Quite a few, actually. "I'm learning," I thought! "I've got a much better response than last time I did this." But then, as you'd expect, my list of possibilities dwindled. A few seemed immature or needed more hours than I could provide. A few were overqualified, so though they were wonderful, $10 an hour was way too little for them. I actually ended up interviewing four women and was very optimistic about 2 of them. Of those, one I never heard from again and another turned down the job in favor of a different job. 

Shoot! Why is this so hard? I  have been quite confident that in spite of her disabilities, once people met Keira they would no longer have any doubts about whether or not they could care for her. They would see how loving she is and would enjoy spending time with her. Now, I was having to admit that my motherly bias was clouding my vision and expectations more than I wanted them to.

 It must be that people are scared. And more scared now than they were a year ago. As Keira grows, it's more and more clear that she is not like the other kids. The differences are unknown, foreign, and hard to ignore. Disability (heck, difference, for that matter) forces us to come face to face with the reality of brokenness in the world and in ourselves. It's uncomfortable. I admit it. Not that I am uncomfortable with Keira, but I would be if I were not her mother. 

To me, this realization is both disappointing and scary. Disappointing because upon seeing how easy it was for me to love Keira, I was sure it would be easy for others to do so as well. I wanted (want) others to have this opportunity with Keira and with others who might be on the fringes for one reason or another. All I had to do, I imagined, was make her available to the community. I thought this would be an easy job and it, sadly, is not. 

It's also scary. Scary because part of the motivation for enlisting so many others in our journey is to ensure that she will be cared for for the rest of her life. Whether her life is long or short, whether with Jeff and me or without, I want her to be loved.

This realization is poignant to me as a Christian. 

Keira is beautiful inside and out. It's indescribable. She has a smile and a laugh even in the most difficult circumstances. She looks at me like she's glad to see me no matter what. She doesn't expect much. She doesn't hold a grudge and is quick to forgive. Her eyes lock on you, so clear and blue, and there is no doubt that she loves me. And I wonder: is it possible that I'm not here for her, but she for me? 

Because she is love. Just love. That's what she has and what she is and nothing else. She will not do what the world would have her do. She has no worth in the world's eyes. But it doesn't matter. Because, in the end, what really matters? Love. Just love. 

But people are frightened by her! They have the opportunity to experience this love, to give love, and receive love, but they shy away. Underneath, I believe, is a fear:  If I get too close, I won't know what to do. I won't be able to fix her. I'll feel like a failure. I'll feel so limited. Because I am limited. We are limited. 

God doesn't give you more than you can handle. Special kids go to special parents. A child with special needs is a gift. Gag. I hate these cliches. 

Why do they bother me? They aren't necessarily untrue, I guess. To me, they seem sloppy and disingenuous; a way for others to say, "everything's ok," and not have to sit with any suffering that comes with it. The truth is, I DO, in spite of everything I ever knew or wanted, find her to be a profound blessing. A gift. 

I have this gift, and I want to share it. It's hard to reconcile that with the difficulty in it being received. And that's what makes her like God, or of God, right? All she is is love. But people are scared of what she will require of them. 

*IMPORTANT! In the end, we found a perfect solution for our afternoon care needs. All along, a teenaged neighbor girl has been wanting to help us out. She has known K since birth and even did the March for Babies with us, back in the day. I didn't go to her directly in the beginning because, since she is so young, I can't yet pay for her through Keira's insurance. We're finding a way to make it work. So thankful for this young lady. 

Inclusion, Part 1

Nearly a year ago, our new pastor proposed that Jeff take on the role of "special needs minister" of our church. In his words, this ministry is what would "make [the church] Christian."Jeff was flattered, and is decidedly qualified for the role, but thought long and hard about taking this on. Finally, a few months ago, he was welcomed onto the staff of our church as the minister of "Inclusion." 

The word inclusion was chosen carefully. The term "special needs" has become the politically correct term that most associate with individuals who have mental illness or cognitive impairment. Its ancestors include the words disabled, handicapped, retarded, and many others that are now considered insensitive and outdated. Jeff, understandably, hated to label this ministry at all, longing to have more than just a club, of sorts, but a change in the culture of the church as a whole. He wanted to resist the appearance of showcasing the anomalies in our congregation and he wanted the ministry to reach far beyond what one typically thinks of as "special needs" to include anyone who could benefit from our congregation and building being more accommodating. Thus, the term "inclusion" seemed to be the best fit. 

As Jeff's wife, and as a psychologist, and as Keira's mom, I see myself as a partner, to some degree, in this endeavor. The ministry is moving ahead slowly (He does have the other full time job) but surely. Jeff and I both have made gains in building relationships and being available to individuals and families who have outstanding concerns.  

Jeff's current plans include buying and installing speakers in our "hospitality room" so that individuals who get overwhelmed in the crowded service can participate in a quieter environment. He's brainstorming with others about adding a valet or shuttle service due to our limited accessable parking. And he and I both are working with pastors and teachers to help create space for individuals with special needs, whatever they might be, to participate more fully in church activities. 

I couldn't be more proud of Jeff for taking on this role. It seems that many experiences he's had in recent years have uniquely prepared him for this and it's pretty exciting. 

Live! From Las Vegas!

I've done it! I've really done it! I'm on vacation (under the guise of helping my sister and a friend with their new babies) for 10 days ALL BY MYSELF! 

I'm headed to Nashville first, to hang out with Shelly and Sam. Then I'll hop a plane to D.C. to see Dana and her family. Finally, I'll go back across the country to see Matt graduate with his doctorate in Seattle! Liam and my folks will meet me there and we'll all drive home together. 

I feel so carefree! Granted, it did not come easy. It's nice to know that I'm still capable of having this sort of feeling under appropriate circumstances. I'm not dead inside! No, it's not really that bad, but life has me feeling pretty bogged down most of the time. Getting away required a lot of preparation. I had to ensure that hour by hour each kid had all the supervision and transportation that he or she needed. I wrote up a 3-page itinerary and instructions in addition to all of K's medical information. There are at least 6 individuals and families (not counting Jeff, therapists, and teachers) who are coming alongside to help me have a vacation! 

This is the longest, by far, that I've ever been away from Keira. She probably wonders why I was squeezing her so hard this morning! And the boys, apparently, will miss me. I guess it's different when I'm leaving them, rather than them leaving me! My kids are so prescious. Really. Who made them? 

So much has been going on. So. Much. As my list of things I'd like to write about has gotten longer and longer, it's felt harder and harder for me to share so publicly. Maybe though, with a few miles (and states) between my regular life and myself, I can empty myself of an idea or two. Stay tuned.