Monday, December 3, 2012

When I See You Smile (writing prompt)

When I see you smile... I remember when you weren't smiling. Eight weeks (adjusted age) came and went. Nine weeks. Ten weeks. Eleven weeks. You still weren't smiling. It was impossible to get you to even make eye contact. I am not one to usually jump and call the doctor, but I did. We were really concerned. And it was heartbreaking to be doing so much for you - trying to keep you alive - and yet to feel like we weren't in a reciprocal relationship.

The pediatrician called early intervention to ask them to hurry up and schedule an appointment. There is not much more that a pediatrician can do, unfortunately.

I can't recall when exactly you started to smile. It came a little bit here and a little bit there. It happened quite late, beyond the outliers of typical development. You began to make eye contact too. I'd like to say that we breathed a little easier then. Maybe we did, a little. But there was still so much to do; so far to go.

Now you smile easily. You are engaged with us. You make good eye contact. I am privy to what the opposite of these things are like; I see it every week among other kids in therapy. I am so thankful that you are now so social, so interactive, so reciprocal. Was the smiling thing just a delay - perhaps stunted development after months of  pain and sadness? Or were you on the fast path to SPD or autism? Neither diagnosis is uncommon among children with Kabuki syndrome, and it is isn't hard for me to imagine that your gut issues could have easily placed you in that group.

When I see you smile... I smile too. You are joyful. You are beautiful. You are loved.



Wednesday, November 28, 2012

GAPS Kids (and babies, too)


You will come to a place where the streets are not marked.
Some windows are lighted. But mostly they're darked.
A place you could sprain both your elbow and chin!
Do you dare to stay out? Do you dare to go in?
How much can you lose? How much can you win?

A year and a half ago I had a remarkable answer to the prayer in the form of a private message on a rather obscure message board for feeding issues. One message led to another and soon I found myself so blessed to have become friends with an amazing mother. Check out her guest post today over at GNOWFGLINS. 

It can be difficult to make a radical overhaul in diet. It is more difficult when you are doing this with a young child. It is much scarier to do with an infant who has had frighteningly severe reactions. Some are not interested in making this leap at all, perhaps because they hold no regard for the importance of diet or perhaps because they hold too much regard for modern medicine (which in turn places almost no emphasis on diet). I was ready to make the leap instantly when I read Ellie's story. But there was a slight problem. Juliana was only a few months old. Was this really safe for her? How could I proceed with an infant? At the time I couldn't find anyone who had put an infant on GAPS.  It was scary. What if I made things worse? What if I caused damage? I had some guidance here and there but mostly I was on my own. I didn't feel like I had any other choice, not when we did not have a single food that was safe, not when the GI doctor had told me "I don't have a clue why she has so many GI issues." How much could I lose? How much could I win?

Now we're seeing stories similar to mine in droves on GAPS Kids. I am honored to be a part of this group of people (mostly mothers) who are fighting for their kids. We're learning together, commiserating with each other, and we're healing our kids. If your roads are not marked, please dare to come in one of the few places where the windows are lighted.

Sunday, November 25, 2012

Parent Power


Never underestimate the power of parental love. This is especially important if your child has special needs. It is your love and your desire to have the best for your child that motivates you to seek the opportunities that will provide him or her with the highest possible quality of life. I see this with all the parents I meet. Their willingness to take a stand for new possibilities for their child as they seek to unlock their child’s hidden capabilities takes courage and is inspiring. There’s power in this determination and love teaming up with science and skill. It expands the child’s opportunities beyond the limits of clinical diagnoses, commonsense reasoning, and past experience. It is often the first step on the pathway to the miraculous.

Investing in the Future

One thing I did not anticipate about having a child with different needs? The cost. Expensive doctors, expensive therapists, expensive suggestions, cross-your-fingers-that-insurance-will-cover-this cost. On top of that, we’ve been on COBRA for the past eighteen months. COBRA = sky-high premiums. I don't like to dwell on negativity but I do have to be real: it's expensive. I don't get too hung up on that fact; I am happy that we have been able to keep our heads above water (though sometimes just barely). I try to view all of the money spent as an investment in Juliana's future.

At the beginning of this journey it was very difficult for me to determine how we should proceed with the onslaught of options. Over time we’ve moved from a state of desperation to a place where we can more carefully evaluate our choices. I am truly grateful that we live in a big city with so many options for treatment. I am truly grateful that we had savings that enabled us to pursue some of these options.

How we’ve invested:

Good health insurance. We were really fortunate to be on a good health insurance plan when Juliana was born. Because of all of her medical needs in her first year of life, we had to keep this good coverage and forego the cheaper coverage that was otherwise available to us. The premiums alone were something like four times what I paid when I was an employee and they exceeded the cost of our monthly mortgage payment. But we were really grateful to have excellent coverage and the silver lining was that our deductible was fairly small and therapies were mostly covered. We paid out mega bucks for this policy but it was the right decision. It was really the only option. (Medicaid began helping out with this cost earlier this year.)

Therapy. Many insurance policies have very subpar therapy benefits. One reason that we stuck with our COBRA coverage was the unlimited therapy coverage. Compare this to the other coverage that was available to us at the time, coverage of only 20 visits per year. We blow through 20 visits in two months. So, great! We have had insurance coverage for this. But just to make matters a little more complicated, we chose to stick with out-of-network therapists who don’t file insurance on our behalf. So now we have to cough up cash up front, deal with the paperwork and sometimes fight the insurance company to get our reimbursement. It is a 70% reimbursement which is pretty good when compared to other policies (maybe as good as it gets?). Assuming that everything is reimbursed (I am currently arguing with the insurance company) we pay $300-$400 a month for therapy. However we are about to begin new insurance coverage with a new employer and we don't know yet to what extent the policy will cover these expenses. From time to time I think about cutting back on these therapies, but we have seen too many benefits to consider that thought for too long. (Medicaid does not help with our out-of-network therapists at all, it does pick up the speech therapy bill however).




Diet. Last but not least! Diet is the cornerstone of Juliana’s success. If you’re in pain, you can’t learn much at all. Her diet is certainly more expensive than that of the average kid but it’s not astronomical. It’s hard to calculate what it costs since I usually buy things like meat and supplements in bulk. Even though our whole family now follows a GAPS/paleo diet (with the exception of David, who is a partial participant) our food bill overall has not increased too terribly much. I attribute this to the fact that we now eat out infrequently and almost all treat/junk foods are completely eliminated from our diet.

We’ve chosen not to invest further in:

Chiropractic. I know that chiropractic has worked for so many of my friends, so it is with great dissapointment that I must announce that it has done nothing for Juliana. I saw two highly-recommended chiropractors. The second one actually came highly recommended from several people, including another chiropractor. He is on the faculty at the local chiropractic college and he’s in their textbooks and yada yada yada, he should have been good. I liked him personally, especially in that he was skeptical of some natural treatments that are a little “out there.” He seemed credible and he wanted to help and he even had some fairly decent therapy ideas. But he really did not do anything for her, unfortunately. At the time she had pretty serious torticollis so it was fairly obvious to me that treatments were not doing much. We also tried craniosacral therapy with this same chiropractor and again, I was not impressed. Still I may consider chiropractic again in the future, and I have in fact been thinking about it as Juliana still has some side preference issues.

Homeopathy. Again, it has worked for so many of my friends. I remain pro-homeopathy but I did stop working with the homeopath that we were seeing because I wasn’t seeing any results. (And I make it my job to study Juliana.) I have used other homeopathic remedies on her and on myself. This is something that I would consider again, if I knew a really good practitioner.

Osteopathy. A cousin to chiropractic, I was excited about this one. Osteopaths can function like a medical doctor. This one did not. He was a somewhat-local person and renowned among those-who-know-things. We went a handful of times and, as with the chiropractor, I saw no benefit. I don’t think I would consider this again, unless he wanted to come to my house and work on her for free.

Naturopathy. I actually have never seen a naturopath for Juliana but I have seen one for myself. I was less than impressed with her and with most stories that I hear about naturopaths. I am sure that there are exceptions, but I have spent time researching the naturopaths local to me and I’ve decided that I am better off not spending my time and money on them.

Early intervention. I am not a fan of early intervention because I don’t get to pick my therapist. I don’t want to spend time on run-of-the-mill therapists who do things like teach Juliana how to stack blocks. I can do that myself, no clinical experience needed. We do continue to use our early intervention coordinator to help with paperwork and he advises me of various opportunities, such as his recent advice to visit Lekotek, a toy lending library (which is another small investment in and of itself, actually.)

Neurodevelopmental program. This is something that I was very enthusiastic about - and I still am. Ultimately though I have decided that at this time we will not participate in a formal program. It is very time-intensive and when we tried it awhile ago it simply was too demanding for me. It was also an additional cost. I try to do my own thing, incorporating ideas from all the therapists as well as from some very savvy moms.

I am still interested in:

Anat Baniel. I first read about this technique here and I have remained intrigued as I follow updates in the blogosphere. Unfortunately I am not aware of a practitioner local to me. I follow ABM stories with interest, but this remains pretty much out of the question for us.

Palate expander. Juliana has a high, narrow palate. This is a common feature of Kabuki syndrome and it is also common in a number of other disorders. Dr. Weston Price actually used a palate expander on a young man with Down syndrome and afterwards the young man grew taller and had a measurable increase in IQ. Read more about it here. This is something that I will do for Juliana. I am not sure when and I am not sure where, but we will do this.

Developmental optometrist. Juliana has strabismus; her eyes cross. They are not continually crossed, one eye will cross, then they’ll be straight, then the other eye will cross, etc. Her opthamologist has me patching alternate eyes for an hour daily. I am really not convinced that this is enough. Her OT believes that the strabismus is partially sensory and that various sensory input can help reorganize the brain and straighten the eyes out. Maybe so, but this hasn’t been enough, either. A developmental optometrist assesses the function of the eyes and then comes up with various therapeutic exercises to improve the coordination between the eyes and the brain and to get the eyes working as they should. I hope to begin this soon, depending on cost and insurance coverage or lack thereof.

As the years go on I am sure other ideas will pop up here and there. Thanks to the internet I am fortunate to be privy to so many people’s journeys and I love discovering what is working for someone with similar issues. But for the most part I am nearing the end of the road as far as treatment options go and I am ok with that. I absolutely believe that all the things we do benefit Juliana, but I don’t have any reason to believe that there is something else out there that could do even more for her. 
I feel like I have become a fairly good judge of what are the best treatment options for Juliana, given our time and budget constraints. At the end of the day, she has a loving family who accepts her and who wants to help her be the best that she can be. What more is there than that, really? Couple that with the help that she is getting from our wonderful therapists and I think that she has the foundation for success.

Saturday, October 13, 2012

Successes Big and Small

After a long period of trial and error, the kids and I have finally settled into a weekly routine that works for us all. It feels very "normal" even though it includes four therapy sessions a week. Unfortunately as part of this strive for normality (and manageability) we had to cut out our weekly music therapy. While it was enjoyable for both of the kids it was really very supplemental and not necessary like the other therapies are. I do feel badly about it, especially since it was the one therapy that Calvin was able to participate in and he really liked the therapist. But ultimately cutting it is for the greater good of the whole family and it gives me a little more sanity.

These days we have therapy three mornings a week. One morning we have OT. Another morning we have Speech. And the third morning we have both PT and OT. Fortunately these last two sessions overlap a bit so they are not two completely different appointments.

Calvin comes with me to the OT and PT appointments. We watch these sessions through a one-way mirror (Juliana is typically perfectly content with her therapist and I feel very comfortable with their overall philosophy, so I am happy to sit outside the room as an observer. My presence would really distract her otherwise).

We've also been seeing our new speech therapist for about a month now. I was really dreading adding this therapy back to our schedule but so far it has turned out to be absolutely wonderful and very productive. Calvin doesn't attend these sessions as I think it's difficult to do speech with a sibling present. It's been decided that these mornings will be spent with Grandma and Grandpa, definitely a win-win for all of us.

This level of therapy is perfectly manageable right now. We still have two days a week where we don't have to be anywhere (perhaps not entirely true as we do still see an audiologist, an orthopedist, etc.)

So, how is Juliana doing will all this therapy? During our last speech session our therapist said that Juliana's feeding skills are at age-level. While this wasn't totally surprising to me, it was still pretty amazing to hear someone else say it! A year ago she was probably only eating a few ounces a day, and even just a month ago I was struggling to get her to accept certain textures. Now she is amazingly caught up with her peers. I no longer have to distract her to get her to eat, I no longer have to feed her myself. This is another sign of improved sensory processing. She is eating very few pureed foods these days, there are only a few instances where I feed her these foods mostly for my own convenience.

All of these feeding progress is great as it has made things easier on me. But what's even better is the clues that it is giving me into what's going on in her brain. I'm not a speech pathologist and obviously my expertise has been related to only one patient. But from all my research online and in conversations with therapists, it seems to safe that very often mishaps in the brain will manifest themselves in many different ways, feeding issues very often being one of them. A child who is not neurotypical may aspirate, gag, swallow food whole, may not chew properly, may have an extremely self-limited diet, may not be able to self-regulate food. A child with serious sensory issues usually is a child with serious eating issues. Juliana is moving past these issues at what is certainly a lightening fast pace. (And yes, I credit GAPS for this success).
Yet another picture of Juliana chowing down. Sausage patty this time.
Meanwhile the PT and OT are always commenting on how much stronger she is getting. They are in agreement that she pretty much has all of the skills and the strength to crawl. Now it is a matter of integrating it all together. Of course I am really excited for her to begin to crawl - not just because it is more efficient than rolling around the room but because it is so hugely integrating for the brain.

All of the therapists have noticed her fine motor skills. Sometimes her hands lack the strength to do something (light switches are still difficult for instance) but when it comes to other tasks she's quite adept. Case in point: she has enjoyed playing with Calvin's legos for some time now. She really tries to put two pieces together (admittedly difficult, I remember that even Calvin had a difficult time with this initially). She enjoys taking things apart piece by piece. She recently discovered that we have little hats and helmets for the lego men to wear and she loves putting these on their heads and taking them off again.

Admiring her creation.
I am so humbled by this. I'm amazed. I feel undeserving of all this success. I'm not the best therapy mom. I find it difficult to incorporate into our lives. I am a stickler when it comes to diet and when it comes to treating Juliana "normally" but in a lot of other ways I feel like a therapy failure. I write down all of the suggestions for our "homework" and I always have great aspirations but feel like we fail at many of them. Still, we must be doing something right. Fortunately success spurs me forward and I feel like we've been getting in a little more therapy lately.

 What else is in store for Juliana? It truly seems that the sky is the limit. Next up? Crawling.

Sunday, October 7, 2012

31 for 21: Down Syndrome

If you have a child with different needs then you may very well already know that October is Down Syndrome awareness month (during October many bloggers blog daily - 31 days - for Down syndrome - Trisomy 21). Juliana doesn't have Down syndrome, obviously. But there was a time that I wished she did. There's a whole different layer of complexity when your child does not have a diagnosis and there was a time when I longed for answers and support from other parents. Fortunately we have all of that now.

Sometimes I pause to think about the parents out there who have just received a diagnosis. Maybe it's a prenatal diagnosis. Maybe it came as soon as the baby was born. Maybe it came months later. There are certainly difficulties within each of these scenarios. I know that it's easy to feel hopeless, to feel like a failure, to feel like you as the parent are personally responsible. All of these feelings will diminish with time.

So why am I doing a 31 for 21 post? Because I wanted to share this incredible video with you. Heath White was a man driven to perfectionism. He later had a daughter with Down syndrome. He wanted his wife to have an abortion but she refused. His daughter turned his world upside down and he's all the better for it. This is a really beautiful story, enjoy:


This is the type of awareness that I'm all for. I don't really care much for most "awareness" type things - I personally don't see a lot of value in awareness alone. Webster defines awareness as "having or showing realization, perception, or knowledge." Personally, I don't care if anyone beyond my circle of support has knowledge of Kabuki syndrome. What I do think is needed is appreciation for people who face different struggles. I also hope that people will learn that having a child with a disability is far from the worse thing that can happen to you. Let's appreciate people for who they are, even if they are different. I promise that we will truly all be better for it.

Thursday, September 27, 2012

Bookworm

Juliana is a bookworm - a total fanatic for books. When I taught her the sign for "book" she instantly caught on and began using it to her advantage. When I ask her if she is ready for bed, she always starts to sign "book!"


We have two set reading times daily: before naptime and before bed. But I think she would be happy to read books all day long.

Pride and Joy

One of the most surprising aspects of the past eighteen months was my inability to deal with the challenges. I was not much of a candidate for postpartum depression and to be thrust into its throes was both surprising and terrifying. In retrospect it gave me a totally new viewpoint and a new understanding and for that I am appreciative.

I used to pray that I would hurry up and get over it, that I would accept the situation and that I would love Juliana just as I loved Calvin. When the days were long and difficult, when she was vomiting everywhere, when she still wasn’t smiling at us or even looking at us, I kept on keeping on by telling myself that someday the situation might be different. Even in a depressive state, I didn’t want to have regrets of how I spent the first few months of her life.

I hope that that in sharing our journey over the past eighteen months I have not inadvertently blamed the stress, the sadness, the PPD on Kabuki syndrome. I wasn’t depressed because Juliana had concerning health issues: I was depressed because she would not eat. The emotional toll that this takes is absolutely incredible. I sincerely hope that I have never portrayed Juliana as a burden. She is not. She is most certainly a blessing.

We most certainly got off on the wrong foot, with health issues and a feeding/GI nightmare. Add in the fact that she was in the NICU from the time that she was a few minutes old until she was 4 weeks old. Very unexpectedly, I had a hard time bonding to her initially. There simply was no opportunity to do so. It gave me a lot of grief as I strongly believed that things would become immeasurably easier once I had a strong bond to her.

Things are very much easier now. To be clear, life may never again be as ‘easy’ as it once was. I look around at others and sometimes I can’t help but to think about how my challenges are greater than theirs (quite possibly I’m wrong - comparisons like this are admittedly completely unfair to all parties). I used to find myself dwelling on this but as time goes on these thoughts are extremely fleeting. These days I chastise myself for thinking that easier somehow equates to better or more fulfilling. It doesn’t.

I recently read Angel Unaware, the story of Roy and Dale Evan Rogers’ daughter who had Down syndrome. (Hopefully my younger readers know who Roy Rogers is.... David didn't!!) It was a very quick read and honestly I found it hard to relate to the 50s era outlook portrayed in the story. While the Rogers loved their daughter very much and they outright rejected the idea of sending her away, they also gave up much of her care to a live-in nanny and for the most part they continued to maintain their busy schedules. It’s particularly saddening to me since their daughter died after her second birthday. All that aside, the Rogers had a wonderful outlook on life and I particularly enjoyed an account that Dale recalls:

One day Father Smith, whom I had not met, called on the telephone and said to me, simply, “I want you to understand that I know all about your child. You have done the right thing in bringing her home with you to cherish her and love her. You and your husband will soon begin to receive what our Lord wants you to learn from this child. In my opinion these little children are allowed to come into this world to bless lives. Their presence teaches patience and understanding that makes those around them more godly. Mrs. Rogers, you are truly blessed by the Lord, and you may be sure that your sweet Robin will one day be rewarded handsomely in the hereafter.
From the outside looking in, this may simply sound like a platitude. It’s not. We humans may be masters of self-deception but with this type of experience platitudes don’t go too far. Juliana has brought with her a lot of change to our lives and all of it has been good. All of it has made us better. We’ve experienced a roller coaster of emotions, from depression to worry to happiness and pride. I am immensely proud of her. This is really the first time I’ve experienced this type of pride as a parent. Don’t get me wrong - we think that Calvin is one of the most amazing human beings to have ever been born. But it’s undeniable that everything comes easily and naturally for him, so this type of pride is quite different. It is far more intense. Juliana amazes us on a regular basis.

Not that long ago I wrote that I would take away Kabuki syndrome in a heartbeat if possible. I didn’t yet understand the (wiser) parents who said that they wouldn’t change anything about their child. But as I have healed from the immense stress of our first year I have slowly come to a much greater appreciation of this acceptance. Personally I’ve come to the conclusion that diagnosis is irrelevant. When I look at Juliana I don’t see Kabuki syndrome. I see her for who she really is and her personality far outshines other issues.

I’ve been very honest in my accounts over the past year as I don’t think there is any point in sugarcoating or anything less than genuine. I hope that my posts demonstrate a progression from feeling sorry for myself to empowerment, peace, love, happiness and all that jazz. I hate to think that I’ve painted a negative picture of parenting a child with different needs, but at the same time I have to be honest about the difficulties. The lows are very low. But I want you to know that the highs are higher than you would ever believe.

Wednesday, September 12, 2012

Eating Well

Once again it's hard to believe the progress we've made in the past few months. Just a few months ago I was still frequently relying on the TV to distract Juliana while I would feed her. I hated having to do that; I limit TV in general and I am definitely not fond of eating in front of it (exception for myself after kids are in bed, of course). But I found that the TV was often just the right amount of sensory input for her to calm down long enough to eat. You do what you have to do when getting a sensory-sensitive kid to eat.

These days the TV is no longer necessary. I was able to slowly transition her to meals eaten in the kitchen or dining room. One of the most successful things I did in this process was encouraging her to feed me during mealtimes. Though I've always tried to follow her cues, I still really felt like she was tired of being told that it was time to eat and she was tired of me trying to shovel food down her throat. And who can blame her for that? So I found that she really enjoyed feeding me, whether it was real or imaginary food was irrelevant to her. This made the feeding time more of a two-way street. It put us on an even playing field. She began to eat a full meal without the aid of any distraction. I didn't come up with this idea all on my own, it is one of the tube-weaning techniques used at Graz.



From that point she's learned to self-feed and that's brought an entire new level of happiness and self-control to her meals. We still have a long way to go with utensils but she's thrilled to feed herself small pieces of meat and vegetables.

Yet her eating skills still need some improvement. This is part of what recently drove me back to speech therapy after taking a break over the summer. The first issue is that she doesn't really chew her food, rather she just swallows it. The second issue is that she is sensitive to certain type of textures. She's happy to eat a soft vegetable like squash but she's totally uninterested in something like cauliflower, unless it is pureed.

This world of pureed foods and spoon-feeding has all been a  new experience for me. With Calvin I loosely followed the concept of baby-led weaning and we did few purees and not much spoon-feeding. By the time he was really becoming interested in solid foods (sometime in his second year) he was also able to eat anything that we would eat. Because he continued to nurse continuously, I never worried much about whether or not he was getting enough to eat or if he was getting the right nutrition. Juliana's situation really could not have been any more different.

But back to the progress update. What excites me more than anything though is that Juliana is often eating the same meals that the rest of us are eating. Sometimes her version of the meal might need a little modification (like leaving off the cheese or the heavy seasoning) but otherwise she has begun eating dinner with the rest of the family. And she is immensely happy about it - she knows when she's being left out! This is not to say that she's now at a point where she is eating pizza and cake, rather it is to say that we are all eating fairly simply. But there are no complaints from anyone, and what more can a mother ask for?!


I still worry about how much she is eating and sometimes it is difficult to trust that she knows how to self-regulate her needs. But I have to admit that she has done a fine job of it so far. We have a few things to work on, but overall she is eating great foods and she is eating them well.

Friday, September 7, 2012

Self-Determination: Requirement for Success

They are able because they think they are able. - Virgil

There is a tendency in the “special needs” community to treat our children as if they are.... special. I’ve eschewed this stance from the beginning. It wasn’t done consciously, at least not at first. I was already a parent when Juliana came along. I try to be very intentional in my parenting and I am idealistic regarding how I want my children to be raised emotionally, intellectually and spiritually. None of that changes for any child of mine, regardless of their diagnosis. We have always treated Juliana exactly the same way that we have treated Calvin.

I have often wondered if special needs kids don’t develop certain skills simply because they have not been given the opportunity to develop those skills. Recently I read a story of a teenager with Down syndrome who liked to mow the lawn. His mother wanted to know if she should have him wear protective eyewear while he mowed.

Does anyone wear protective eyewear when mowing the grass? I never have and I’ve never seen anyone else do it, either. I have seen similar stories of parents who are afraid to let their teenager boil water. This type of coddling is not for me. I would much rather presume capability and then watch as my child lives up to their potential.

I was delighted to see this thought expounded upon by Kathie Snow in her excellent book Disability is Natural:

Many parents and professionals still do not look at children with disabilities and presume competence. We don’t expect them to be responsible. It’s almost as if we think it’s all right to keep children dependent, for parents and other adults to control their lives; we’ll wait until they’re adults to worry about their capacity for self-determination. But we can’t wait! And we must not make our children wait! ... Being self-determined is more important than any other functional ability.
Is it possible to be successful without also being self-determined? I think not.
Snow actually takes self-determination a step further than I expected. A self-determined child must come from a self-determined family. I hope that someday my account of Juliana can be summarized as such:

When we’re self-determined, we don’t automatically accept the conventional wisdom about our children, nor do we make decisions based solely on the expertise of others.
I’ve spent the last 18 months learning all the special needs lingo and reading as many accounts as I’ve come across. There is rampant reliance on “the system,” whether that be the medical system, the medicare system, the early intervention system, or any system outside of the community that parents have traditionally relied on for advice. There was a brief time when I did put my faith in this system: faith in doctors to help my baby stop screaming in pain, faith in therapists to help her progress. But before too long I remembered that I am the person who knows my child the best. I am the one who has a vested interest in her outcome. I am the one who lies awake at night wondering what I should do next. I am not on a payroll, this is my life 24/7. We can certainly utilize elements of various systems but I believe we lose in the long run if the service system begins to define our family and subsequently destroys our autonomy.

I utilize “the system” as one of many tools in my toolbox. Juliana is in Early Intervention. She has multiple doctors. She is also on Medicaid. We seem very much like “system” people. But I don’t always follow the advice of doctors, and most of my greatest successes have been as a direct result of disregarding their advice. If a therapist says something that I disagree with, I don’t assume that they are right and I am wrong. I don't ask doctors or therapists for their opinion on how I should parent. When Juliana ages out of Early Intervention therapy and we’re told that it’s time to send her to a special needs preschool, we will decline.

We are in control of our lives, not the system. We decide what’s important. We decide what’s normal. We prioritize for our family. Long ago I made a vow that we would not structure our entire lives around therapy schedules. Admittedly, we’re still not there. But at the same time we have not taken on a therapy load that is impossible to handle.

If our children have grown up in families that are dependent on the system, they’ll learn that as adults, they should depend on the system. Don’t underestimate the importance of this: it’s not just about being on SSI for the rest of their lives, it’s about leading segregated lives. Lives in sheltered workshops, institutions, activity centers, etc. I very much want both my children to lead lives that are integrated with regular society, lives with unlimited opportunity, lives that contain interactions with all sorts of people and lives that are self-directed. The goal of inclusion is one (of several) reasons why a preschool specifically for special needs kids will not be on my agenda.

While writing this I have wondered if I’ve come across as overly idealistic, particularly to those parents who have children much older than mine. Maybe so. But one thing that I’ve learned from my friends on the Kabuki syndrome group is that our kids have so much potential; potential that is overlooked by doctors, therapists and everyone in the ‘system.’ My fellow parents have been told that their child will never walk, never talk, never do this or that. Of course, the child does go on do these things - and much more. I will always treat Juliana normally, and I will always have high expectations for her and her potential, despite the secret fears that linger in my heart of hearts. High expectations set a course, and that alone is reason enough to be idealistic.

Monday, August 27, 2012

The Amazing Therapy Swing

A few months ago my Dad built a small platform swing for Juliana. The inspiration was a therapy swing that is very commonly used in both Physical and Occupational Therapy. It looks like this:


My little platform swing is a little rough around the edges compared to this one. However my little swing was built for about 10% of the cost (roughly $20). We installed eye hooks in our basement so that we can hang up this swing or a regular swing down the line (maybe when it gets cold outside). I gave these instructions to my Dad, but mind the measurements as this swing is smaller than the one used in therapy clinics.

The swing has been incredible for Juliana. We generally use it twice a day, sometimes for 10 or 15 minutes at a time. She loves it and she is also really challenged by it. It's hard work to lay on your stomach and hold your head up so that you can look around the room! It also really helps with vision (she has a slight strabismus) because you have to focus on objects as you are flying around. That requires some serious visual coordination. As if that weren't enough, it also is part of her sensory diet and helps meets her vestibular needs

Watch her in action:

After a month or so of using the swing daily I began to notice a marked improvement in her neck and back strength. Whereas before she could look up and look around for 10 or 15 seconds at a time, now she could do it for whole minutes at a time. Whereas before she would easily tire, now she could swing for 20 minutes and spend most of the time looking around with only brief breaks. 

A week or so ago I began to notice that she was getting much higher off the ground when she rolled over. On one of these rolling occasions I helped support her hip and encouraged her to sit up. And presto, she did it! She sometimes requires the leverage on her hip and other times she is able to do it on her own. Watch her here:

That was exciting! But tonight was even more exciting. She was playing on her stomach when I noticed that she was trying to push up with her arms. She has never done this before (not unassisted, anyway). She was trying to get up on all fours but she wasn't quite figuring out how to coordinate the movement. She was so proud of herself! And I was ecstatic as this sort of pre-crawling activity is something that I have been looking forward to for a long time. We caught some of it on video:



I've been feeling for awhile that we were 'due' some developmental leaps. Motor skills progress has been at a standstill for months and I still largely attribute this to sensory issues. Prior to just recently Juliana was completely unwilling to attempt such movements even when aided. 

Our swing has truly been invaluable. I would happily hang it in the middle of my living room if I didn't have a basement. I hope to add a few more homemade swings to our collection, ripping off ideas from the many various therapy swings available for sale.  Calvin also enjoys the swing but in a much more passive way as it is not something he craves the way that Juliana does.

Saturday, August 4, 2012

A year later...

I was recently looking through an old notebook and found the following:

8/4/11
Juliana plan

1.) Discourage vomiting by smaller, more frequent bolus feeds. Start with 40ml bolus, about once an hour. Be careful of sensitive times of day, 2am-11am.
This was back when vomiting was common and it seemed to be easy to overfeed her. I sometimes wondered if she had delayed gastric emptying. Maybe she did.

2.) Work on gag reflex by playing more with mouth.
This was because she would gag spontaneously sometimes which would ultimately lead to vomiting. Her mouth needed desensitization. 

3.) Continue to spoon feed and offer liquids.
She was just starting to get used to small amounts of food and drink.

4.) Burp her so that she gets used to it.
Burping frequently led to vomiting.


I'm amazed by the amount of healing that can happen in a year's time. Someone once told me that natural healing is a slow process and it turns out that unfortunately this is a true statement. There was no quick fix. There was no magic pill. Doctors, unfortunately, were useless. It was a long, slow, difficult process. Now it's hard to believe that this little girl used to be 100% tube-fed.

Chicken wings - her favorite!

Egg drop soup - also a favorite!
These days I am not so concerned about Juliana's diet or her feeding skills. Both are in pretty good shape. I have new worries, of course: the sensory issues she has with her limbs (she lacks some awareness), lack of appropriate mobility (she can roll with the best of them but I want more), the fact that she still doesn't transition to/from a sitting position (though she can do this with only minimal assistance). At this point I am only mildly concerned about her speech and I try not to compare her to her super-verbal brother. Hopefully in a year from now these concerns, like the concerns listed above, will no longer be on my radar.





Friday, July 6, 2012

How to Choose a Therapist: A Cautionary Tale

Juliana hated therapy. I hated it, too. Why was I spending so much time and effort to get her to these therapy appointments which we both hated so much? Often she would cry throughout the majority of the session. Was I really doing the right thing by letting this continue? I was between a rock and a hard place with a baby who needed outside assistance but who also hated every minute of it. Was this the only way? It was heart wrenching to watch her cry and struggle but I didn't know what else to do. So many of the other babies seemed to enjoy therapy, so what was different for Juliana?

Looking back I can see that I made several mistakes when we began our journey into therapy-land.

First, I assumed that therapy was therapy and that all therapists were similar enough. Just like you would expect that even a semi-competent doctor could treat a common malady, I expected that a pediatric therapist could help with the issues that we were facing, issues that are uncommon for the general population but very common in the special needs community. I learned that this was not the case when our first feeding therapist told me that "we just have to hope that she doesn't develop an oral aversion" whereas our second feeding therapist gave me specific ideas to help with oral sensory development.

Second, I bought into the idea that more therapy = better outcome. I bought into the idea that therapy could help "fix" whatever was wrong. What's worse is that I bought into the idea that Juliana just needed to suffer through it and get with the program. I listened to outsiders instead of listening to my own intuition. That was wrong. While I try not to overestimate the power of intuition I have become wary of completely disregarding it.

Third, I underestimated the importance of a therapist who is knowledgeable about sensory processing and integration. Granted, we only received this diagnosis relatively recently. However I thought that any pediatric therapist of a reasonable repute would be somewhat knowledgeable when it came to sensory issues. But alas, this is not the case. Based on my experience the opposite seems to be true; our former therapists didn't have a clue when it came to sensory integration. The word "sensory" was never even mentioned. These former therapists would simply try to "push through" therapy sessions with Juliana. She didn't like it, but we had to get it done, so we would just keep doing it and hope that she would get over it.

I regret handing over my baby to people who often didn't know what they were doing. Sometimes I stopped the sessions when the crying was too much but sometimes I didn't. I was always present for her and I always let her know that, but it rarely mattered. What she wanted was to be out of the therapist's arms and into mine. It usually hurt to watch and as time went on and therapy sessions did not improve, I began to really wonder if we were harming her instead of helping her. I agonized over the right course of action. She did have extreme separation anxiety her first year of life and she wouldn't even let David hold her if I was in her line of vision. Is it a coincidence that this anxiety is markedly improved since we have fired all of our former therapists?

After meeting with our new OT several months ago I realized that our entire therapy team needed an overhaul. We discontinued OT through Early Intervention and we now see a music therapist instead. This has been fun for both of the kids. We discontinued seeing our old PT and now see a new PT that understands sensory integration. We discontinued speech but will probably pick it back up a later date. The result of these changes have been phenomenal. Juliana now really enjoys her therapy sessions! She seems to be benefiting from them. I really enjoy watching her have fun. Because she is having fun and not distressed, I am able to pay attention to Calvin during this time. The time requirements of therapy seem much more manageable now as well. The PT and OT can combine their sessions so we are out of the house for appointments only twice a week. The music therapy takes place at home.

These experiences have helped me develop my own criteria for therapy:
  1. It should be fun and games. Would other kids want to join in on the therapy session? These days Calvin always wants to play with Juliana and her therapists - not so much the case before. I think that learning happens when kids are having fun and not when they are miserable or suffering. 
  2. It should be optimistic and upbeat. The OT and PT that we now see are so optimistic. I never realized before that this optimism was lacking from therapy. For instance a previous therapist might have made a comment about how Juliana was at a six-month skill level even though she was twelve-months old. This kind of commentary is unnecessary and unhelpful. Our new therapists don't speak this kind of language. We talk about where she is and not where she isn't. When the OT recently told us that Juliana was mostly at age-level on a social, emotional and cognitive level we were over the moon! Never mind that her gross motor skills are way behind. 
  3. There should be hugs and kisses. The therapist should kiss your child. Our new therapists give hugs and kisses and seem to really enjoy working with Juliana. I hear them telling kids regularly "I love you." This really means a lot to me. I like that the kids are seen as real people with real needs and real feelings and not just as an object that needs to be fixed or worked on.
  4. Knowledge, passion, but most importantly... a gift. A good therapist has more than just knowledge; she has a gift for helping others. Some people have this and some don't. Looking back now I believe that this is something that can be assessed after just one visit. It is one of those things that you just know.
  5. I'm the mom, and I know best. If you even insinuate that this is not the case? You're fired. I don't want to be pushed or guilted into doing something that I know is not in Juliana's best interest.
  6. We're a family first. I struggled for a long time with trying to balance the very different needs of my children. I want to work with people who understand that we need to be an integrated family and not a family that spends all of our time doing therapy. At our first visit with our new OT she had me in tears when she spoke about how both of my kids had needs. Of all the doctors and therapists that we've seen, she was the first person to acknowledge the sibling issue.
It took me a year to develop these standards. On one hand I wish that I had known this from our first day of therapy but on the other hand I'm just glad that I figured it out at all. In Disability Is Natural author Kathie Snow discusses her interviews of adults with developmental disabilities. She found that very often these people had painful memories of therapy; memories of strangers touching them and moving them and forcing uncomfortable experiences, all while their parents stood by and let it happen. Ouch.  In our fervent desire to help our children, we subject them to things that we would never do to children without disabilities. 

Ultimately I plan to quit therapy altogether although this idea seems overly ambitious, crazy and a little sacrilegious. We're not at a point where I feel that this is in Juliana's best interest but I am hoping that we can reach this point within a year. I am still learning a lot from our therapists and I feel certain that Juliana is still benefiting. However as time goes on I am learning more and more ways to bypass therapy altogether, thereby helping to insure a normal childhood for both of my kids and a normal family life for all of us.

Tuesday, June 26, 2012

In.... and Out

June 22, 2011 - Juliana had a PEG tube placed.

June 22, 2012 - Juliana had her g-tube removed.

I didn't realize the significance of the dates until afterwards. I was instantly overwhelmed by a flood of memories: remembering all of the very difficult decisions I've had to make, remembering the constant worry, remembering the feeling that my life had changed and that it was not for the better. And now? Now it is hard to believe that things were once so hard.

Saturday, June 23, 2012

Signs of healing

The past few months have seen two major signs of healing: eczema and constipation are now things of the past. These were both problems that have plagued me for the better part of a year.

Juliana's eczema appeared shortly after we began feeding her liver-based formula. At first I thought it was detoxification from moving to a better diet. The body has mechanisms for expelling the bad junk and some people do experience skin issues while they detox. Did you know that the skin is the body's largest elimination organ? It is sometimes called the third kidney because of the way that it helps the body eliminate waste. But Juliana's skin wasn't improving; she continued to have a very red and splotchy complexion even after months on the new diet.Then I thought it was maybe a nutrient deficiency. But the different things I tried didn't have any effect. Eczema originates from a leaky gut, and I already knew that she had that, but why were things getting worse when I was doing everything right?

In late March she had surgery for various ENT concerns. On the day leading up to the surgery her skin looked horrible, so bad that I wondered if they might cancel the surgery just based on her skin. (Likely I'm just paranoid - you see how paranoid you are when your kid has surgery!) Of course they didn't cancel the surgery; they actually didn't say a word about her skin. The night before I had given her an epsom salt bath and it actually looked a little bit improved.

And that was the solution: epsom salt baths. These baths are important because they help the body expel toxicities.
Anything toxic we eat, breathe, touch or put on our skin absorbs very quickly and puts another workload on our detoxification system. In a GAPS person his or her gut is the major source of the toxicity overloading the detox system with too much work. [1]
Our bodies must eliminate large amounts of waste products from our systems daily or we will die.  The bowel, lungs, kidneys and skin are our four channels of elimination.  [2] 
Juliana's detoxification is sluggish and confused. It needs all the help it can get. We've been doing the baths regularly for close to a year but I had let bath time slide when life became too busy. Honestly, I thought the idea of a detox bath seemed a little bogus. I was so wrong! I decided to commit to regular baths despite the circumstances. And it has worked. Eczema is a thing of the past; we haven't dealt with it since the surgery. She still sometimes has lightly flushed skin. Right now I am contributing it to the heat of summer and it may also be a result of increasing fermented foods in her diet. 

The next sign of healing is much more recent. Juliana had chronic diarrhea for the first few months of her life that eventually turned into chronic constipation. This was despite eating a very clean, very digestible diet that includes probiotics and fermented foods.
Constipation is always a sign of deficient gut flora in children and in adults. The beneficial bacteria that normally populate the bowel play a crucial role in proper stool formation and elimination... a healthy person should have 1-2 stools a day. [1]
A few months ago I began to implement the constipation protocol that is in the GAPS book. This meant daily juicing (carrots), epsom salt baths (check!) and enemas. Daily enemas. The idea behind this is that you can't let the toxic poop stay in the body for too long. It needs to be expelled or the problem will compound. This obviously results in more constipation but it can also cause a number of other problem ranging from eczema to learning disabilities. That last bit might sound crazy, but remember that what happens in the gut has an effect on the brain. Letting poop sit in your body for a long time simply isn't healthy. By this point I am sure that I have performed more enemas than most medical professionals. Enemas unfairly get a bad rap; they are completely safe and very effective. I was concerned that Juliana might come to rely on them but that has never happened.

Despite all those enemas we still weren't seeing long-term improvement until I discovered the recommendation to eliminate winter squash. (For more details, see the FAQS, Constipation section, #6). Butternut squash has been Juliana's main vegetable for quite some time! I began cutting back on the amount of squash and instantly the constipation showed signs of improvement. After eliminating the squash completely, the constipation issue is gone. Just like that. I want to note that it's not just the removal of squash that has improved her stools; squash was simply the last piece to our puzzle.

Eczema and constipation are sadly both rather common problems for young kids. Both problems originate from a leaky gut. Both problems can be treated completely naturally. (Though your solution might very well not be exactly like ours). I've had drugs pushed at me for both of these issues and I've resisted. Other than a little bit of coconut oil I have never used anything on Juliana's skin. I have also never used any sort of laxative or stool softener. There were times when I wondered if I was crazy and I seriously entertained the idea of going outside the GAPS protocol, but I have always come back around to the belief that I need to stay the course. After strict adherence to the protocol the results are certainly sweet!

[1] Gut and Psychology Syndrome
[2] The Skin – Our Largest Organ of Elimination

Friday, June 15, 2012

Broth Balls a.k.a.Meat Jello

Broth balls: my new creation deserving of its own special name. Although composed entirely of meat, they are pretty different from the meatballs that I normally make:

Mmmm...
Juliana still eats mostly pureed food. She needs to practice her feeding skills but she has a very nervous mommy. These broth balls are really perfect for a baby learning to chew. They will slowly dissolve to mush in the mouth. Basically they are like the real food version of Gerber dissolving cereal puffs.

The secret to broth balls is getting the right amount of liquid in with your meat. I boil a pound of frozen meat in two cups of water. By the time the meat is cooked there is about a cup and a half of water leftover (but now it's meat stock - don't throw it out!). I puree all of this in the Vitamix. Let it chill in the refrigerator, and voila! You may find that you need to adjust the amount of water based on fresh vs. frozen meat. Your finished mixture should be quite liquidy before going into the refrigerator. If it doesn't gel after refrigeration you can add in some gelatin.

Note that these must be served cold or at room temperature. If they are heated they will melt and turn to mush.


Friday, June 1, 2012

Sensory Integration

This story begins with the developmental pediatrician, a doctor that I didn't know if I should bother with. After you've seen a dozen doctors, most of whom are not really helpful at all, you really have to question whether or not to add another doctor to the list! Despite that, I decided to pursue it. There were a couple of people on the Kabuki group who said that a developmental pediatrician was their most important ally and that was enough for me to give it a try.


I wasn't sure what to expect from the appointment. I went over a brief history and after that the doctor spent about thirty minutes just observing Juliana. Several times he asked what we were doing in OT and several times I told him. Finally he told me that we needed to do much more sensory work because he thought that Juliana was having some issues with sensory integration. This really made sense to me in retrospect; there are a number of little sensory-seeking or avoidance behaviors that Juliana has. To anyone not familiar with sensory issues these behaviors would just look like little quirks. For Juliana these sensory issues have manifested themselves in a variety of ways: oral aversion turned into rabid oral seeking, not being able to sit still, often being discontent even when being held, crying when things got a little bumpy (such as when riding in the car), practically falling over because she was so overwhelmed when David walked into the room, almost always clasping her hands together, not being able to separate from me *at all.*


The doctor set us up with 'the best' OT who specializes in sensory integration. He warned me that it wouldn't be cheap and that I should consider it an investment. I told him that was fine, I was interested in the best,  please give me the best. (There seems to be a running rule that the best therapists don't file insurance, are out-of-network, and they certainly don't accept Medicaid).


It's now been about six weeks since we began seeing the new OT. I was very quickly hooked! During our first visit she spent two hours with us and during most of this time she explained the senses. There are actually two senses beyond the five senses that everyone knows about (and neither of these is seeing dead people - ha, ha). These two senses are Proprioception and Vestibular:
Proprioception refers to the way your body communicates with your joints, tendons, and muscles. When your proprioception system is working properly you know when you have bent down, when you stretch your arms, and basically where you are in the space around you and internally. You know all this without having to look so you can close your eyes and bend your arm and know where it is. This is what the police officer is checking for when he asks you to put your finger on your nose. If your drunk, you can’t do that very well—the alcohol alters your sense of proprioception.
Vestibular is the last of the senses that many people are not familiar with but experience every single day. The vestibular sense refers to a person’s sense of balance and movement. It has a lot to do with your ear—so if you have an ear infection you become acutely aware of your vestibular system. We are all born with an innate knowledge of gravity because of our ears. Certain parts of the human ear tell the brain that a person is standing upright, upside down, or on his or her side. 
Having the sensory system up and running correctly is really vital for obtaining new skills. Just imagine how difficult it would be to learn how to crawl if you weren't aware of your limbs.


You can read more about the senses here.


Our new therapist is not only very knowledgeable but is also very passionate about what she is doing. (And I don't know how she does it - I feel tired just thinking about what she does all day long!) So far she has taken good care of us. When we first began these new therapy sessions I had a short list of areas were I would like to see improvement: I'd like to see Juliana tolerate her PT sessions, I would love it if Juliana had less anxiety when I leave the room, I would like to figure out how to meet her sensory needs so that she does not feel so compelled to try to mouth everything in sight, especially things like grass or leaves. Since we've begun OT there have been improvements in all of these areas and then some. 


We actually received an amazing report from the OT this past week. Each week so far she has been excited by the improvements that she has seen. This past week she said that Juliana's social, emotional and cognitive skills are mostly at an age-appropriate level. Yes, her motor skills are really lagging. But the OT really emphasized that we are still in such a good place!

All of this OT fits in very nicely with the therapy that we're already doing at home. My hope is that by the end of the year I will be able to handle most of Juliana's therapy on my own. That's what I am gearing up for now. I am creating our own therapy room and I am devouring resources. I am trying to observe sessions as best as I can so that I can learn some of the tricks of the trade. 


Does sensory integration sound like something that your child struggles with? There are a number of excellent books on the topic. You may or may not find a developmental pediatrician helpful. You almost certainly would benefit from an OT who really knows sensory processing; but a really good therapist can be hard to find and, at least in my experience, has a high price tag. It's my belief that a neurodevelopmental program will also help tremendously (and it is far cheaper in the long run!). If your child is young a good place to being is with the (poorly titled) book How Smart Is Your Baby? If your child is older, look for a neurodevelopmentalist in your area and also check out NACD and IAHP. Last but not least you almost certainly need dietary intervention


We've done all of the above - and we're seeing results!

Saturday, May 19, 2012

Siblings

"Mama, can you tell the therapist about me today?" Calvin asked me on our way to physical therapy one morning. I might have shed tears over this little cry for attention, but we were running late and my thoughts were hurried. I don't remember how I answered him; most likely it was in the affirmative. During therapy sessions Calvin is usually kept occupied by a rousing game of Angry Birds. Despite this I know that my quiet, intuitive little boy is still aware of all that goes on around him. And while he mostly keeps it to himself, I know that sometimes he feels left out.


Siblings of children with special needs deal with a different type of rivalry: a competition for even the most basic forms of attention. The child with special needs requires more or everything: more time, more effort, more financial resources, more discussion, more concern. It is no wonder that the other sibling(s) can often feel left out.


I have a couple of ways of combating this, although I am far from perfect and I feel like I fail at it nine times out of ten. First, we're trying to be much more intentional about giving Calvin one-on-one time. We notice a huge boost in his mood when he gets this time with either of us. There is simply no substitute for this kind of quality time with his mom or dad. 


Second, I try to foster a relationship between Calvin and Juliana as best as I can. This is actually difficult as Juliana pays a lot of attention to me, to David, and to the dog, but not a lot of attention to her brother. Calvin is always affectionate and kind to Juliana and I could probably count on one hand the number of negative interactions that the two of them have had. However, they don't interact nearly as often as I would like since he's not getting a ton of feedback from her. (I would appreciate prayers for this. I am hoping that the sensory work we are doing will also give this a boost). I also try to include him in her therapy to the extent that he is interested. There are some exercises that he enjoys doing himself (bouncing on exercise ball, pulling up with a dowel). There are also some exercises that he enjoys participating in as a 'teacher' (rolling balls or cars up and down the crawling track is always fun).






Third, I try to meet his needs as best as I am able. If I run an errand with only Calvin in tow, he will ask me to carry him throughout the store. I do it. This is a request that he never makes if we're with Juliana. He asks me to take naps with him. I do this too. (Admittedly I love doing this...) When he wants to spend some time showing me how he plays Angry Birds, I oblige. I don't load any of Juliana's needs onto him. I have been careful to never say "not right now Calvin, because I am doing such-and-such with Juliana." I don't want to set up any sort of additional competition for my time. I also try to be sure to talk about him in a positive light just as I do Juliana. For instance if I tell David a story about a new thing that Juliana just learned, I try to also tell a story about what Calvin did that day. Calvin craves this kind of attention.


I've only been at this a year so I'm still learning. I think that for the most part I am not parenting in a very special fashion; the main difference is that I need to be far more intentional about it than what would be required in typical circumstances. Calvin really bottles up his feelings (I have no idea where he got that from...) and I really have to pay attention to him to see how he is doing. I know that things have gone too far when he is quieter than usual and is only looking at the floor.



Calvin was born kind and empathetic. It is truly his personality (though he certainly still has his moments). I have a very distinct memory of holding Juliana in the NICU shortly after the doctor had ordered an ultrasound on her head. She wasn't eating and one possibility was that she had suffered brain damage. I couldn't process all of the implications, so instead I just rocked her and prayed for her. I told her that if she was brain-injured, that was ok. I thought of Calvin waiting for us at home, and what would life be like with these two children? I told Juliana that I had the best big brother waiting for her and we would take her home and love her regardless. There have been many times between then and now that I have been so thankful for Calvin and his wonderful personality that is so suited for this situation.


I do believe that ultimately Calvin and Juliana will both experience huge benefits from their relationship. I hope and pray that they will both teach and encourage one another.