Search This Blog


Saturday, July 25, 2015

Enough of the Hero Talk & Working Parents of Special Needs Kids

Ellie's left foot and her flexing her toes!
On July 22nd Dave took Ellie to get her groovy green casts off. And they did come off revealing no skin issues and beautifully elongated and more functional feet. The other amazing thing we are noticing this week is that Ellie is moving her toes more and differently than she was able to before. We went from worrying about feeling being lost in her feet to seeing she has more feeling and more function than before the surgery - which is unexpected and incredible and I am truly grateful for this happy surprise. You can use her flexing her whole foot here which she was not able to do before.

Then after letting her feet dry out and checking her many sutures they put casts right back on. She now has electric pink casts and still has to use the wedge and is on hip precautions until August 10. Ughhhh. Hip precautions means that we can't use her ceiling lift to transport her because the sling it uses makes her bend more than a 90 degree angle at the hip. She is a two person lift. What this means is that Dave or I have to be here to help the nurse or PCA we have on helping us. Did I mention we both work full time?

There is family medical leave act but neither of us have applied for that. There is a stigma in the working world that gets put on you if you have a child with special needs - at least in my experience. In my own job I was overlooked for a promotion because, and I quote, "We didn't think you would want the position because of your daughter."  I applied anyway and got the job. But it was a bummer not to be asked by the leadership team to apply when everyone else around me who knew of my work was saying, why don't they just offer the spot to you?  Well they didn't because I will always be that woman with the daughter with special needs.

So it goes.

New AFO mold at neutral. 
And I realize I am writing this juxtaposed to just sharing that we do have this issues with lifting her. Which means I will need to work from home when Dave is out of town. He can work from home because his employer allows that for everyone.  What this looks like is every two to three hours the nurse will say, "Hey can you come help me do a lift?"  He or I say, "Sure." Get up from our desk, walk down stairs to Ellie's room, help the nurse transport her into her bed from her chair, then go back up stairs. The whole process takes less than 2 minutes which is less time then it takes to get a cup of coffee or use the restroom. In fact, getting up from one's desk every hour to stretch your legs takes more time. The work effectiveness impact is minimal. There are many studies that show that working parents who have flexibility at work to say work from home, work harder and are more loyal to their employer than other employees.

My question is: How is this scenario different from a parent of a typical kid who is home sick?  Or a professional who has to leave work early to take care of an elderly parent? Or the worker who goes on 15 minute coffee or smoke breaks?  (Other than the fact that our helping to lift Ellie takes far less time than a coffee break.) We all have times when our work is impinged upon by family matters. Why is this so different? After August 10th this two person lift issue will go away.

The other thing I have been hearing a lot is that, "You are a hero!" People inquire as to how Ellie is doing and I tell them then they say it, "Well, you're a hero."

I feel bad every time people say that and they are saying it a lot.  It makes me feel uncomfortable. It makes me cringe. It is so isolating. It screams  - you are so different from me.  Your situation is so beyond everything that I will put you in this unique category over here where I can keep you at arms length. And it also says, your situation is so horrible you'd have to be a hero to deal with it.

Ellie's right foot, the most impacted by her CP.
I realize it's not meant to say any of that. The people saying it truly care and are concerned for us.  But all that the sentiment implies is wrong. My standard response back is, "You would do the same thing  - you really would if it were your child." And really, wouldn't you?  If you love a person you take care of them. It's that simple. No heroics needed. You just do what you have to do as best you can.

The other thing these comments imply is that Ellie is hard to love.  This of course is ridiculous. She's such a great kid and a sweetie pie and funny and yes she's having a rough time now but is handling it really, really well considering. I would go out of my mind if I had to sit there with a wedge between my casted legs for months. I, in fact did have braces on my legs like that as a toddler, and remember bashing a big hole in the wall by my crib with the screw that held them on as I swung my legs back and forth out of pure boredom and pent up energy.  Ellie can't swing her legs so she is essentially pinned in one position until someone else helps her move.

I know the hero label is meant as a compliment. And maybe I reject it so much in part as a knee jerk reaction from playground trauma that happens with girls in childhood. You know the one where one girls says, "You look good or you have pretty hair" And if you say, "Ya I do" or even imply that you agree them in the slightest you are ostracized. You learn very early the only correct response is to say, "No way, I don't look good or my hair sucks, it's so frizzy"

I know this is part of the cringe factor I feel when other women tell me I'm a hero and it's not because I think I am, it's because of the issue with labels and who is good and who isn't BS.  However, it's the arms length, let's set you apart thing, that bugs me more as well as the idea that taking care of your own kid through an injury (in our case TBI) is a heroic act in a world where many people are dealing with much harder things.

I think we should just leave the hero talk out of it. If I pull someone from a burning building or discover the cure for cancer or find the answer to world peace or a way to heal injured neurons - then talk to me about being a hero. And then I may say, "That's right!"

But parenting my own child, isn't that a given? In fact if I don't do that well then aren't I negligent or even criminal?  Dave and I are hard working to be sure but so are all good parents. If you are doing it right then you are working hard. The hero wall has to come down though. There are more similarities than differences after all between the typical world and the special needs world if we are only brave enough to look for them.

Tuesday, July 07, 2015

Sleep Deprivation and Resilience

This chair if really helping thanks to Liz!
 Ellie continues to improve every day. The casts on both feet, knee immobilizers and wedge remain until July 22nd at which point we hope the casts will come off but not sure about the rest. I think Ellie thought that once she got home the knee immobilizers and wedge would come off. She's made it clear she hates them as they really, really restrict her movement  - which is the point. She is coping with that and the pain really well. Liz brought over this Lazy Boy recliner and it has been a wonderful thing to have. It's heavily padded and gets Ellie out of the bed. Though in this picture you can see she has had enough. It's a hard thing and bummer of a way to spend the summer. I have had to be pretty firm about making sure she eats and drinks. She's so out of sorts in every way it's been hard to get back into any sort of routine.  As a result there has been very little rest for any of us. 

Her circadian rhythm is also flipped. She has been up all night and uncomfortable despite the pain meds since she got home on Friday. This is hard for us. In fact one of the hardest ongoing things about raising Ellie has been her inability to sleep through the night. I just ordered this light to help maybe flip her back to a proper rhythm.  Let's hope it works. I had hoped that approaching puberty she would start to sleep more like any good teenager - but not yet.  Still she is only 12.

She's also on some heavy pain meds that are messing with her sleep. We are stretching to dose from every four hours to every six today and it seems to be working. It feels like a long road ahead. My friends in my book club have been dropping by meals each evening for two evenings now. That really helps and is so lovely since we don't have any family who support us in the day to day. 

A note about positioning: Here you can see her on her side. Her body has to stay aligned (straight). She has the casts, wedge, and knee immobilizers on. We are using the cloth chuck underneath her to move her and it helps. Then using pillows and bolsters to help her stay positioned. We switch back and forth to the other side as well as sitting when ever she wants or at least ever two hours.  At night she can't seem to get comfortable regardless. We keep trying. Part of the it to state the obvious is that she just had her bones operated on and bones take a long, long time to heal. So it goes.

Careful positioning keeps Ellie aligned and comfortable.
I keep wondering if I wrap my head around this differently I might feel better about the lack of  sleep and the stress of it all. Maybe if I was just more chill?  One problem is that it's bad right now and a part of my brain goes to the place where it says - it's going to be this way forever.
When I go there I get instantly overwhelmed. And of course, it's not true. The one thing you can always count on -the one constant in life - is change. 

It's a challenge - this management of the self. It's a challenge not to think of how life could be different. 

I have been inspired lately by this guy who exemplifies what a zest for life means.  Watching him jump into life's challenges every day give me energy to "Do more and work harder" as Casey would say. And we do work hard but focusing those efforts on the right things at the right time is the key. Part of that work is keeping focused, positive, and present.

Sunday, June 28, 2015

Hello Walkable Feet

Ellie asleep yesterday evening.
Ellie is resting now and we have a long road ahead of us. She has casts from the knee down to toes on both legs. Within those casts are feet at neutral and straight if not pointing out slightly (which is good because her tone pulls them in). She has flat feet! I don't mean that in the can't get into the army way and I can't see if she has a proper arch. But she no longer has feet twisted to the side that don't allow her to stand.  It's a wonder to see and a good thing as I have discussed in my last post.

She also has a foam wedge between her knees and knee immobilizers. It's going to be a very long recovery. Right now she has an epidural block in so she can't feel her hips and pelvis. This is a godsend.  I worry about the pain after that. There's a whole team devoted to her pain management and so far they have been doing great.

Ellie's a bit out of it and uncomfortable - but sleeping intermittently.  She needed a blood transfusion but since she got it her color is a lot better and when she is awake she has more energy.

So far so good.

Amazingly we got assigned a private room so it's quiet which suites Ellie very well as she is such a light sleeper. It's a small reprieve. And of course, it's raining. It rained the day Ellie was born - back in the days when it still rained in Los Angeles.  It rained when she had her brain bleed. It rained when she got ventriculitus when she was still in the NICU.

As we were driving in yesterday it rained too and Dave commented on it.

I love rain and am trying not to see it as a sinister thing. Maybe it's more of a symbol of healing for Ellie?  Maybe it's a way to soften the sharp edges around her?  Maybe it's just rain.

I totally see how superstitions start.

Despite the rain, Ellie survived these many surgeries within a surgery. We will be able to let her stand and in doing so let her organs stretch and breath and allow her body to build bone and muscle.  Because we went through this, ensuring that the pain is worth the gains that these interventions allow is critical.

Friday, June 26, 2015

Surgery Day

Ellie got the "Independence" Award at school!
It's a waiting game right now. Ellie is in surgery and will be for the next 9 hours. They got the PIC line in and the A-line and the epidural and the surgeon just made the main incision for her pelvic osteotomy. I asked my Facebook friends to send good thoughts, and whether you agree with our choice to do this or not, please send love and good thoughts to Ellie.

She has a long road ahead of her  but I believe it's one that leads to better quality of life than what she has now AND ensures that her body will be the healthiest possible so she can have a long life.


Central Question

The big question that has been on my mind in preparing for this surgery is how to manage our energies as parents. I managed other big questions for Ellie like how to get her to gain weight so that she would have more reserves and she did gain 4 pounds! Go team Ellie!  Dave and I both managed all the other agonizing choices and decisions to make leading up to today.

In the past Dave and I have not been good about managing our own energies. Recently, in an episode of "Naked and Afraid" (disclaimer: yes this is a guilty pleasure, and yes, only in America, and no it is not porn) a pair of survivors were just at each other psychically the whole time - jealously weighing who was doing the most work, obsessing whether or not the other would come through with key needs and basically circling each other in the death grip of two drowning people. Finally one tapped out and the other - who was so dysfunctional in the presence of their partner - suddenly became very functional.

Some times Dave and I are like that - not that bad or course - but this dynamic exists in a subtle way - and we just exhaust ourselves in the process which is good for no one - especially Ellie.

The way I have seen us in this dynamic in the past is around how we manage Ellie's hospital time. Typically we both stay by her side for 12 hours and then one of us will stay with her in the hospital over night and the other will go home very late and come back very early then we both stay for 12 more hours and the other one will go home for the night but get back very early. In short, no one gets any rest and we burn out and get cranky and don't have as much brain power to make choices for Ellie because we are so tired.

Last year a friend had to do a similar surgery to what Ellie is going through today and her mom and dad handled the hospital time totally differently. In fact we went in one night and brought the dad some reading material and a beer. He was obviously strained because his child was in pain. But he was also in the flow of it and as such emitted a very calming energy. He was present for his daughter and somewhat rested. Mom was home with the other kids and visited every day but was rested too. After their hospital stay of a week Dad, who stayed at the hospital the whole time with his daughter, had to travel to another country for work and mom took over. And she had the reserves to do so because they had managed their energies so well.

Their easy sharing of the responsibility did not leave them as exhausted as they might have been had they practiced the joined at the hip way Dave and I have managed this in the past. It was still hard but as well managed as it could be.

This time Dave and I are taking longer shifts and giving the other a break in between to catch up on rest. One of us will still be by Ellie's side at all times. Don't get me wrong. We would never leave her in any hospital alone - ever. 

But Dave was up last night with Ellie who, understandably, did not sleep well. She never sleeps well but last night it was particularly bad. And then we were all up by 5am to get out the door to get to the hospital by 6am.  I was up in the middle of the night with her the night before.  The Gods of No Sleep have returned and been camping out with us for a solid 2 years after a year off. Damn them!


Flying Hearts
Once Ellie was in surgery we waited for the first update and then I sent Dave home to go to sleep. He is taking the first night tonight and as we were awaiting the first update he looked exhausted. I'm glad he's gone home to rest.

When something like this happens, a child is ill or injured or maintains a life long disability, 95% of couples split. I can see why because for us anyway, Ellie became our central concern.  We have to remember to also take care of each other - and in the past we have not been good at that and we were younger and had more energy.

Dave will come back toward the end of the time of her surgery late this afternoon and then, once they are settled in a room and if Ellie is ok, I'll go home and come back mid-day tomorrow and stay for two days while he goes home and rests. He will visit of course but only for a couple of hours versus 12 hours. In the mean time I hope he sleeps in, rides his bike, and rests and rest and relaxes and eats well and hydrates. And then he will take the next two day stint I will try to do the same.

When Ellie gets home we are not going to have help caring for her 24/7. I anticipate some very long nights. We will be vigilantly trying to keep ahead of her pain. All her care will be that much more difficult because of her pain, casts, knee immobilizers and wedge. It will be harder to feed her. And this will go on for weeks and we will be balancing this with full time jobs. 

If we exhaust ourselves here - while we have help - we will be all the more tired when she gets home. I want to avoid that.

In truth - maybe the central question really is - how do we survive this experience of raising Ellie and care for each other too?  Maybe in trying to do both we will find not only more grace but more joie de vivre?

Tuesday, May 12, 2015

Orthopedic Summer

Hi Everyone,

Thank you to those of you who have written to thank me for sharing our story and to say that in that sharing you found some hidden strength and hope. Hope is a powerful thing after all and it is what keeps me going through the darkest times. It motivates me to action.

Ellie having a foot soak.
When Ellie was born they told us she may not make it through the next few hours, then the night, then the week. After she survived for two months they told us that we should sign a DNR because she had diffuse PVL and that she would be severely impaired.  Horrifying to be sure that they would suggest doing a DNR on a kid who needed suctioning so she would not drown on her own secretions. After that we were afraid to leave the NICU at all in fear that they wouldn't work hard enough to save her. 

However, the NICU nurses never gave us that impression that Ellie wasn't worth saving - just the opposite. It was specifically two doctors who did the test for PVL that frightened us so much we just decided to always have one of us on watch. We were already putting in very long days there but after that we would only leave once in a while when a particularly trusted nurse was on. But if there was a respiratory therapist we didn't trust we would stay all night and all day.  That was our life for 134 days. I don't know if it was necessary but the protective instincts we had as new parents were very strong and are still in high gear today. I don't think we will ever get over how intensely protective we feel toward Ellie. I am sure it's the same with any parent. 

During Ellie's infancy and toddlerhood I was also afraid of what our future would be.  What if Ellie were severely impaired? What would that look like? Would I be able to handle it?

These were big questions. And they were on the table for a really, really long time. When she was so little it was hard to know if she would keep progressing or would she stay in the baby stage forever, for example. They told us that we had to make huge progress with her before she was 5 because her development would taper off. And it is true that there is rapid brain development from infancy through toddlerhood. But the brain is constantly re-arranging and adapting based on the needs of its environment. This is why it's so important to bring the world to your kid if they can't access it themselves. Stimulate your child is what we heard and we did as you can see a little bit of by reading here. And it really did help. 

However, in some ways I think that Ellie's foot and leg issues were determined from the moment her brain was injured. In fact her PT/OT in the NICU called it - she said Ellie's feet would always be her hardest problem. And so they are.  But just the same all the work we did Ellie and all the work they do with her now in school helps - it keeps Ellie's brain developing and her life unfolding. Is she at a different  pace than other twelve year olds? Yes - totally.  And that is a bummer in many ways. Don't get me wrong - I wish this had never happened to her or us. It is not glamorous and it's a lot of hard work all the time with lots of constraints I never expected to face.  However, the grass could look greener from anyone's perspective. But she is doing great considering what she has lived through and the challenges she was presented with from her early birth  - yes - fantastic and thank God. It could be worse and I am thankful every day that I get to have her in my life. That is one thing I don't take for granted - ever. 

Now that she is twelve we are facing caring for her has her high tone pulls her legs and feet into knots as her bones grow.

That is why this summer on June 26th Ellie is having a pelvic osteotomy, hip osteotomies, Achilles tendon lengthenings, ham string lengthenings and the bones rearranged along with the muscles in her feet to treat her now clubbed feet. 

The surgery is meant to take roughly 9 hours and she will then be in a hip to toe cast for 3 or more weeks. It will be a long recovery after that with loads of physical therapy needed. 

Ellie Belly checking out the fish at age 4
The consequences of not doing this is that she won't be able to stand much so that her organs will get scrunched which is life threatening. And her hips will start to come out of their sockets regularly - which is hugely painful. 

Once again, as with all of medicine, we are making a choice between two evils. We make the most informed choice we can and move on.  And to answer the unspoken question - yes she wears AFO's every day and her feet still became clubbed. Yes we have tried Botox many times and the last time to no effect.  

With this big surgery ahead of us once again I have to rely on hope - hope that I am making the right choice. Even though we have spoken to four doctors about this and have seen the obvious issues on her x-rays - I still have to hope that we are doing the right thing because you don't know sometimes until you do. 

There is that expression: Have faith in God but tie up your camel.  

It's exactly like that - I have hope but do my homework and work my butt off to ensure a good outcome. Hope alone isn't enough. So send a prayer along for Ellie on June 26th and the weeks following. There are studies that show when people are prayed for they do better. This is a rough thing Ellie has to face once again. I wish she didn't.

Monday, November 10, 2014

Happy Twelfth Birthday Princess Ellie!

Ellie turned 12 yesterday. I can hardly believe it. And as a nice birthday gift for mama she transformed again in a way that may seem small but was really telling for us. Each year whenever she gets presents she tends to shun them. We joke and say that all new toys start off as the devil. We have had to slowly introduce them to her by doing things like playing with them ourselves, or leaving them sort of near by in view and every now and then insinuating that they might be lonely.

Even toys she has come to love and are essential to her, started this way.

But yesterday this pattern changed. She got a KiddiJamz DJ toy - which Dave found. It's really such an Ellie gift because we noticed how she plays her favorite videos on fast forward then going back, etc. in her own pattern.  We also call her "DJ Ellie" because she likes to mix the songs on her toys to fill the house with a music all her own.

So the KiddiJamz is, on paper, a perfect Ellie gift. However, after years of the initial rejection, I have developed low expectations for her acceptance of new gifts; wisely trying not to get too excited about a certain gift for her. But this year she changed.  She took to this toy the minute it was opened.

This is a picture of her playing with her newly unwrapped toy.  She would play with it for a few minutes and then push it away and stare at it. Then she would ask for it again. She did this several times.  You can see how delighted Dave is.

Today she didn't want to stop playing with it to go to sleep and she had already mastered how to record, mix the different genres, record her other toys into her mixes by holding the microphone to them. She has recorded several songs on the little "iPod-like" devise that comes with it! She's incredible and determined and focused. Ha! So this also tells me that, when she refuses to focus on her homework it's not because she can't focus, it's because she doesn't want to.  Bring it on Ellie!

I can't believe she is twelve. Time these days seems to be going by too fast. Ellie has been the healthiest she ever has and has a full life with school and after school activities like soccer and iPad class (yes, there is such thing) and homework. She is spending more time playing on her own and expanding what she can do. We are all changing and Ellie most of all.

Happy Birthday Princess Ellie!
Love, Mama

Friday, November 07, 2014

For the beautiful Anastasia: Questions and Answers

Ellie at Advance with Doran and Dada

Yesterday a father wrote to me with a lot of questions about his beautiful baby girl Anastasia.  Rather than respond in private, since many of his questions are things we also asked in those early days, I thought I would answer most of them here. 

Dear J.,

Thank you for your lovely letter. I am very glad that some small bit of the content here has helped. I remember those early days, and Ellie looked a bit like your Stacey. It's a lot of wondering and worrying about what the future will be. Who will my sweet, beautiful baby become? I also realized at that time, when Ellie was Anastasia's age that, because babies are supposed to be total care, this was the most "normal" our life might ever be: the days when I and Ellie could still pass as just another baby with her mama. (There's some psychology for you. ;-)

I also worried, and I have written about this here, that Ellie would transform into someone I could not relate to or connect with. The good news is, that on the eve of her twelfth birthday, that is very far from the case. She is still my beautiful, funny, smart Warrior Princess. She is still making progress; still evolving.  But I didn't know that would be the case way back when the doctors used to talk about stalled development, as if the brain ever stops creating neurons in response to the environment. We never believed that Ellie would hit a ceiling, though the doctors would say that and we saw other parents who believed that and then made is so by not stimulating their kids beyond that "ceiling."  This is a path I do not recommend. 
Ellie signing Hi!

The brain above all else, is a dynamic system all its own. It's always evolving. And it takes feedback from the body and external environment to build itself. There is evidence of this in spades in neuroscience studies. The simplest example is of new neurons that developed (as shown in the scans) when a person learns to juggle. 

The implication of this for the child with CP, is that if the brain can't make the body do something it's supposed to, because the connection is cut off due to brain injury, it might be possible to wire it up from the outside. Make the body give the brain feedback by motoring the child's limbs, etc. through the motions. We did this on many levels on it worked in getting Ellie to eat and drink. Because of her prematurity and lack of oxygen at birth she arrived with no suck reflex that typical babies have. Then she had a Grade 3 IVH brain bleed on Day 2 of Life that impacted her nervous system leaving her upper body hypotonic or floppy and her lower body hypertonic or spastic. The hypotonia in her trunk and head, face and neck meant it was hard for her to move her face. She had a mouth full of cotton and weak sphincters. She could not feel all that much, nor control her tongue. So we did facial exercises in her mouth and on her face that we learned in the NICU from the amazing Jean Dolaway. We worked with a feeding specialist to learn more techniques and exercises beyond the NICU. That was time and money well spent. We did them for many years. She was able to learn to eat and drink after over 10,000 hours of working with her on this. We are currently still working with her on drinking. In her case, the input from the outside allowed her brain to build new capacity that was supposed to be a reflex coming into life but was taken out by her rough start. Our stance was to never quit trying to stimulate her - to bring the world to her because she could not go to it. We still do this and it has helped her immeasurably. 

If there is one thing you do, do that. Bring the world to beautiful Stacey.

We brought the world to Ellie by doing these things: 
1. We talked to her all the time - in a very animated way that resulted in her first sounds and now her very prominent vocalizations
2. We printed out big letters on paper and taught her the alphabet
3. Read to her constantly and exposed her to math as a 2 year old.
4. We did infant massage that helped a lot. 
5. We did lots, and lots of Tummy time! 
6. We did all the PT and OT exercises we learned in early intervention outside of those sessions. 
7. We let Ellie play on a big foam ABC mat at home so that she had to move and roll to get to her toys. This built strength.
8. We did a ton of foot soaks with espson salts so the magnesium would sooth her stiff ankles and feet (we still do those).

Ok so now onto your questions:
What are the three therapies that helped Ellie the most?
That's easy:
1. The neuro-respiratory therapy we did with Linda Scotson at Advance. She now calls it The Scotson Technique. But we did it with Ellie 6 days a week, 4 hours per day for several years, traveling to England to Advance twice a year to learn more. That helped Ellie tremendously with her breathing and eating and being in her body. Linda also counseled me and gave me the strength to fight the medical diet that Ellie was on that was making her sick. See my posts on nutrition. Ellie has severe reflux. I was able to help her be minimally symptomatic by changing her to an alkaline diet of whole foods. We researched this for a long time before we went. And I finally called Linda and had a long chat with her and then made the investment. I encourage you to research everything using the web and asking around as much as you can. There are no easy answers to the questions CP and TBI's pose to our kids. If you call Advance they will talk to you free of charge. I would call them and ask all your questions to them to (that makes two!)

2. The nutritional based healing I did with her by putting her on real, whole foods I make myself that were high in alkaline and low acid. 

3. The hyperbaric oxygen treatments (with the protocol Linda Scotson developed). We did a lot of this since Ellie was 13 months. They helped tremendously. We saw her make gains from them in terms of being more alert and aware and along with the TST she got healthier. Additionally, many of the parents we met doing the same thing, who had kids who had lots of seizures said they saw a decrease in the number of seizures.  So we are believers in (with the right protocol - Linda's is akin to what divers do and is very specific) Hyperbaric.

4. Tummy time.  Tummy time could be number 1. We read Linda's book called Doran, it really shows how being on one's tummy wires up the brain to the body and in Ellie's case this helped a lot. It helped her get stronger all over. We do tummy time every day even now.

Was it worth it traveling to England for TST?
YES, and yes again. If I had to do it all over, I would have done it as soon as Ellie was able to board a plane and I would have done even more of it. The combination of the TST, hyperbaric, and nutritional healing helped Ellie when all the meds in the world were making her sicker and sicker. I would do it all again and am grateful to Linda and the staff there for the work they did with Ellie and us. 

What else do children do at Advance?
Lots of tummy time to deliver the gentle touches that build up the child's respiratory system that allows more oxygen to get to the brain. They will also do hyperbaric. Linda gave me a ton of counseling on Ellie's nutrition that made all the difference for Ellie and for me to fight to get Ellie off the medical diet of synthetic foods the doctors were saying she needed. If you look under the tab "nutrition" you can see in depth what I did. But any child with reflux who also has CP (in fact everyone) will hugely benefit from a low acid, high alkaline diet of whole foods versus the synthetic, acidic stuff the doctors push on their patients. We learned that acid builds up in everyone's cells - this is normal. The way a typical person gets rid of that acid is by movement. Because it was hard for Ellie to move, she had more acid to deal with in general. And this also negatively impacted her reflux.

Is TST useful to a child who does not have respiratory issues?
Yes. Ellie wasn't a chronic lung kid because she was a big 27-weeker. But, because of her prematurity and her brain injury, her body was not developing normally. The TST increased her circulation and oxygen saturation that helped Ellie's whole body and brain. 

How old should a child be to start?
ASAP. You can't start her too soon. The earlier the better in fact. A child's brain is like a super brain, developing and growing like mad. What a great time to influence that by ensuring the body is wired up to it. The TST helps people with brain injuries like Ellie because those gentle influences on the nervous system communicate to the brain and the whole system gets back in sync if that makes any sense. 

I wish we had done it as soon as Ellie was able to travel. It wasn't cheap in that we were coming from the US and our work was impacted by having to take care of Ellie. So we went into debt to do it - but it was worth it. I don't regret it one bit. And, when Ellie was small it was much easier trip than it would be today. Though I want to take her back to Linda for an evaluation. So we might do that at some point. 

What do we do psychologically?
This question of yours is the most heart breaking. I don't think there is any easy answer. Dave and I were devastated of course. But the great thing was that both he and I knew that we loved Ellie and we could feel her presence - our connection to her. We focused on that and decided to believe in her and look for ways to help her heal from her injuries. 

In that sense, healing did not mean believing all the doctors said - in fact the opposite. If we believed them we wouldn't have done 90% of the things we have because they said she would be a vegetable. Which clearly turned out to be wrong. Also, they will tell you Stacey needs this and that surgery, this and that intervention. Be very wary of this. It's true, Stacey may need certain interventions. But the thing to be wary of is two fold. 

First, there is this thing called the "management model." Under this philosophy (also a Greek word ;-) interventions, surgeries are done to help the caregiver not for the healing of the patient. 

Second, medical knowledge is always evolving and doctors don't know everything. So ask the same question of three different people when you are trying to make your decisions. You will be surprised to have three different answers. Also, use your gut and common sense and do your research (like you are by reaching out to me). We were told for example that when Ellie needed a g-tube she would also need a Nisson Fundoplication (where they tie a bit of the stomach around the opening sphincter of the stomach so that the patient can't vomit). We refused based on two things: research that showed the fundo made it very hard to swallow and eat by mouth, and the fact that vomitting is the body's way of getting rid of things that are toxic to it. It didn't make sense. Note: some kids do well with the fundo and need it. But Ellie is hypotonic and reflux decreases if a child can eat by mouth because digestion starts in the mouth. We did not want to take that away from her. We made this choice in light of the doctors threatening us by saying that Ellie was sure to get esophageal cancer. During another, truly needed surgery, we had Ellie scoped and turns out her esophagus is perfect. So the doctors were wrong. 

As you can see, the way Dave and I dealt with all of this was to just dive in and work hard to save Ellie's life and make her life good and cherished and safe and thoughtful and hopeful. This sustained us through years of long nights being up with a vomitting refluxy baby who never slept. It sustains us through all the bad things. We just keep trying to do whatever we can to move her forward. Though I think I could do a lot more these days  - like Feldenkrais. I want to do this with Ellie. I will let you know, here if we do and how it goes.

Another hugely helpful, sustaining thing was being in touch with other parents. The cohort of parents we met in the long months Ellie was in the NICU taught us so very much. The same is true of the amazing parents we met at Ellie's first school. So if you can find others in a similar situation that can help protect your sanity. (So I am glad you reached out to me!)
Ellie playing her guitar this week!

I am not sure that is a great answer to your question. But to be clear, I cried a lot too. I grieved a lot too for many years but especially early on. I grieve still for the loss of that healthy child that Ellie might have been if not for her traumatic brain injury and prematurity. When my grief comes I honor it but try not to live there for long. The cool thing is that whenever I get overwhelmed by worry or grief (and I still do at times, but not as much as in her first 7 years) I go and hang out with Ellie. She makes me be in the present moment. And in the moment all I experience is this cutie pie of a girl, who I love more than life, who is inquisitive, loving and wants to dance! She is my normal and my heart. 

Your Anastasia reminds me of Ellie in terms of the shape of her head. ;-) But she is wide and clear eyed. When Dave and I saw her we both said, oh she's going to do great. Not that we know this for sure. But she looks really good and she's a cutie pie. ;-)

I am sorry whatever happened to her did. I am sorry this is happening to you and her mother. I am glad you reached out and I hope this is helpful. 

Please, write any time.

Love and hugs, 

Sunday, July 06, 2014

Life at 11. Purposeful speech and other news.

Paper Jamz Guitar
Ellie is firmly into the pre-teen zone of consciousness. She introduces us to popular music on You Tube she finds all on her own. She thinks Katie Perry's Roar is pretty great (I agree) and she loves Capital Cities song Safe and Sound. Kissing You by Miranda Cosgrove is also a huge hit.  She still loves to dance with her Fijits and all her toys blaring all over the house. She calls this a Jam Session and she means it. She particularly loves this Paper Jamz guitar as well. All these toys offer a big return for her big effort in motor planning to play with them.  She is so patient with herself and determined when she is manipulating images on the iPad for example. Sometimes it takes her 10 or more tries to get what she wants but she patiently keeps trying employing a laser like focus in her attempts. It's impressive. I need to cultivate that type of patience in myself about my own efforts to learn about and traverse the world.
Ellie at 11 and a half.

She is also still (knock on wood) G-tube free.

I have to pause whenever I think about it because it has been such a huge life change. We can go in ponds now….! Ponds! We live right next to one so that is significant. Though, it's July 6 and we have yet to take her. We are still in our old way of life in our minds in many ways.  I think we are a bit shell shocked. You get into a certain mode of living and stick to that pattern.  It might just be a bit of fatigue too BUT my goal is to take her to our local neighborhood pond this year and just try it. The beach there may not have an accessible path down to the water like the one we saw in Provincetown so that is an obstacle but still - it's worth a look, right?  I need to take a leaf out of Ellie's book and keep trying things until we find the right solution.

She loves swimming and we hardly ever take her. I am put to shame by my friend's who take their quadriplegic daughter a few times per week. We have to get a stander up and running too.  Always so many things to get up an running and it's overwhelming most of the time with both Dave and I working full time.

Provincetown Beach Accessible Path
Ellie is all legs and arms these days as you can see in this picture. Growing, growing, growing, bones winning the race against muscles and ligaments. Which means Botox and casting and other interventions to ensure she doesn't end up a pretzel. Spinal orthosis (body jacket) and ankle, foot orthotics (AFO) are the measure of the day. Her network chiropractic appointments have kept her spinal curvature at bay and have also loosened up her ankles. Ellie has increasingly higher tone the lower you go down on her body and her poor feet and ankles are hit the hardest. I can't say enough good things about how Dr. Jennifer Lees has helped us. I wrote, here, about the initial scare with a huge curve in Ellie's spine that has since resolved. I still take Ellie once a week to Dr. Lees and it's worth every cent and every bit of time it takes to do so.  Thank God for non invasive help!

Ellie also loves her new school. They are rigorous in terms of schedule and academics and making the environment as much like a regular public school as possible. Seeing how much support they give their teachers I am pained for Ellie's old school and what they could achieve if they considered modernizing their approach.  I'm grateful that I switched her though, every day. This year along with having regular science class, language arts and math every day, Ellie also got exposed to industrial arts (shop) and cooking class and a very robust after school program where Ellie got to meet some of the older kids in an iPad class (her favorite), a game playing class (checkers, etc.), and a movement and music class.  They also have a very competitive but inclusive softball program on their AstroTurf pitch. The pitch is one of the only ones in the country at a special needs elementary school….(What's up with that country?!)

Ellie on the AstroTurf pitch with her trophy.
This summer for the first time I am taking her to day camp….there actually is one that provides a one to one aid and can manage Ellie's total care needs. We will see how that goes but I am hoping it offers another way for us to bring the world to Ellie.

The most exciting thing that happened over the last few days is that Ellie started interjecting (with her voice output device) into the conversation - with sentences that were spot on in terms of being part of the conversation.  For example, Dave and I have started watching movies with Ellie on her iPad before bed. We use the iPad because it's a small enough screen so that Ellie can watch the movie without fatiguing her eyes.  It's also a big enough screen such that all the beauty of the movies are not lost.

Ellie as Bat Girl for Halloween
We were trying to figure out how to use Amazon's Instant Video and upload it, etc. on the iPad. During the first attempt, Ellie who was watching intently interjected, "That's not working."  and she was right!  She did it again when we were discussing plans for the day using another short but totally appropriate sentence to join in.  And she did it so fast too in terms of her picking the right options on her Dynavox Maestro - so fast.  It makes me think that she could communicate a whole lot more if she was interested.  Her new school is all about use of technology and it shows but I also think her brain is growing and evolving and she is coming out
of her shell a little more. Her being able to interject into our conversations in a more sophisticated way gives me hope of her being able to, eventually, communicate with people that don't know her well.

Don't get me wrong, Ellie has always been able to make herself heard with us. BUT really only in things revolving around her care, her needs and in a very truncated fashion. For example the tilt of her head to indicate that she wanted to be pushed in that direction. So she does and has always communicated. But for her to say, "That's not working" and be right and right in there with what is going on is very validating in terms of our belief in her intelligence.

Life is going by pretty fast these days. I understand now why when I was a kid I preferred other kids or the grandparent set. The middle of life when you are supporting a family, a home and a career often feels like an unending ride on a fast roller coaster.  It's a lot. Blogging about it is a way to press pause and reflect on the things that matter and make all that hard work worthwhile.
Hope you are having a great summer!

Friday, January 31, 2014

Cha, Cha, Change! or Goodbye Feeding Tube!

Ellie having a lavender foot soak on her Winter Break
This last 6 months has been a time of intense change for us all and for the better. On October 22nd of 2013 Ellie got her g-tube OUT (for good if I can be so bold to say that)! AND on November 4th she started at a new school.

When Ellie was born our wonderful neonatologist Dynio said that Ellie will present her needs. That concept stuck with me.

Me and Ellie playing her Paper Jamz guitars
Ellie's g-tube was always a nightmare of leakage, skin breakdown, and intense management. It progressively started popping out more and more. I tried it all, taking it out for a little time (actually over night) to see if the track would shrink a bit. Taking her to the doctor to see if they could surgically make it less leaky. We are lucky to have a dear friend who is a wound care nurse par excellence so we have been able to manage her dressing at home and avoid the initial yeast and fungal infections that occurred when we were still in California (another benefit of having moved to Boston). But it was coming out more and more and we were changing our elaborate and expensive dressing on it several times a day. They had to do this in school too. And it was constantly leaking.

 In February (this time last year) it was popping out once a day and Ellie's physical revealed low vitamin D levels. I upped her vitamin D and other nutrients and in April got an appointment to see a GI doc to see if there was another type of G-tube that would work better. It had started popping out twice a day. And for those of you who have not lived that - it's awful. Ellie is in pain because stomach acid burns the exposed skin around the tube which was like an open wound all the time. And she loses whatever meal she just ate and you have to transfer her, lay her down, and clean and redress the site, insert a new g-tube (into her stomach) and get her washed and dressed in new clothes. The whole thing can take a good 30 - 40 minutes as you try to distract Ellie who wants to scratch her stoma area because acid on skin hurts and itches. Super fun. So when we went in April we saw a nurse first. She asked me to show her the site. I got Ellie onto the table and asked the nurse for some towels. She was surprised by this. But she got them. Me and the nurse I brought with me then proceeded. I cut off the dressing and my nurse positioned the towels to stanch the deluge of stomach fluids that would ensue after I took out the Mic-Key Button so the nurse could see the site.

When the GI nurse saw Ellie's stoma she shrieked (not exaggerating here), "OH MY GOD! OH MY GOD! It's a hole! It's an open wound! OH MY GOD!" I started to explain how hard we have worked to keep Ellie's skin clean and well cared for and that the tube leaked from the beginning and that we have had to limit Ellie's PT and body Jacket and every thing to protect the site. She kept saying Oh MY God! At which point I started to cry feeling very bad. She then said, "You guys have been going to heroic measures to care for this! The skin around her site is remarkable and perfect! But her site is a hole, there is no track." I said that I had thought so but that Ellie's old GI Dr. had not mentioned that during the last exam. She calmed down once I started crying and I calmed down too. The doctor came in at this point and we decided to try a different tube and see them once a week to follow it. Long story short we tried the tube and it worked a little better but not much.

 The whole incident with the nurse losing it was actually a wake up call for me.

We had been going to heroic measures. Me and Dave and Ellie's teachers and the carers we have helping us in the home. Our quality of life was very negatively impacted, Ellie's most of all by this. Ellie had been doing great taking sips of liquid from her amazing speech therapist Katie. AND she had been eating all her purees for several years now. I realized that maybe she was presenting something new to us. Presenting that it was time to get rid of this awful, painful wound.

I presented this idea to the head of GI at the hospital and he said that if we close up this site and then put another feeding tube in a different spot, there was no guarantee that her skin would not do the same thing. He later retracted that because I think for a doctor it's a huge risk to encourage a parent to get rid of their kid's feeding tube when they have a history like Ellie's.

However, Ellie was doing well with her drinking and a nutritionist had told me there were kids with no feeding tube who did not drink and were OK. Note this was not my goal - I want Ellie to drink. I knew that all the time we had spent changing her dressing and managing her site would now be spent on working with her to drink.

Nosey Cup
But isn't that time better spent? We spent over 12,000 hours getting her to be able to eat and her glowing skin, hair, and growth rate, alertness, and lack of colds (and normal elimination) is a testament to the goodness of having done that. Also, there are cups everywhere that you could make into a nosey cup by tearing or cutting it. There aren't g-tubes and Allyven pads, and Hy-tape everywhere or people who could even handle dealing with Ellie's site. My goal as her mother who loves her is that she be as independent as possible by the time I leave this world and that includes not being dependent on expensive medical supplies (if at all possible). Note, I am not knocking those supplies or the tube - they saved her life. BUT if there is a choice point that involves more work for me but provides an ultimate benefit for Ellie, I am going to go for it.

In the several months before the surgery we worked and worked on getting Ellie to drink. We all (school personnel and Dave and I and our home carers) used spoons and the nosey cups. We had enough experience with feeding Ellie that we knew what to do. It was an adjustment for all of us. Giving someone liquid in a cup is difficult enough. Now factor in someone who moves her head from side to side and has a slight oral aversion. We started by thickening apple juice with apple sauce. But because apples are so hard on the teeth I now give her other things to drink. One is her cantaloupe and coconut water juice I make her myself.

Ellie's Hydrating Cantaloupe Water Recipe:
  1. 1 cantaloupe
  2. 1 100 ml or more of coconut water
  3. 1 pinch sea salt
  4. 1 tablespoon of agave
Direction: Take 1 whole cantaloupe seeds and skin removed and blend it with one big carton of coconut water along with a pinch of sea salt and a tablespoon of agave (optional).

Ellie loves this and it's very hydrating and cantaloupe is easy on the teeth. I also give her my green juice too which she loves! I make Kris Carr's Make Juice Not War juice (Google it). The other thing is that Ellie eats purees all day - not dry crackers or cereals or dry anything. There is liquid in her meals. I do worry about her getting "free water" but for now she is hydrated. Though the doctors would have liked to see Ellie drinking 1,000 ml's of liquid a day, we did the operation when she was at about 300 cc's per day. Which is pretty good as we started at 0. A critical factor was that she would eat her meds that we mixed into her purees.

Ellie on New Year's Day 2014
On October 22 we had the operation. The surgeon told us we would be in only overnight but because he realized Ellie's shunt cables drain into her abdomen and because her site was so bad (the stomach lining was growing outward..!) he did some extra things to ensure closure and that her stomach contents would not leak into her abdomen compromising her shunt. We were in from Tuesday to Friday with Ellie on morphine and in a great deal of pain the whole time. Not fun. Poor Ellie. I remembered it was rough for her to get a tube and for my little girl, equally rough getting rid of one (which is so NOT the norm - typically they close on their own). I am not sure what her karma is in this life, but she has some extraordinarily challenges. Full recovery took about 2.5 months.

Today she is eating slightly less than she did with the tube (but not losing fluids and whole meals either).  She is drinking about 400-500 per day, and hydrated and moving her bowels much, much better, and her vitamin counts are all excellent. She was losing so many nutrients and calories every day right out of her tummy. Now she is keeping it all in. She still has reflux, but it's much better too. The green juice is still a huge factor in her being less acidic but she also isn't taking air in through her belly anymore. We were also able to get a body jacket (spinal orthosis) that actually works because we don't need a big hole in it to accommodate her G-tube.

Most of all, Ellie's quality of life is much, much better! She is in far, far less pain. She is able to concentrate much better without the constant itching and pain of the tube. For her 11th birthday she got her tummy back. Can you imagine how distracting having a feeding tube that hurts all the time was for her? I think about when I get a cut in my finger and how it can be slightly distracting when it's fresh. A leaky, painful feeding tube would be magnitudes worse. Every time I see her smooth yet scarred belly I have to kiss it. She had to be really brave to drink because liquid is really fast and scary to deal with if you are hypotonic and have dysphagia. Ellie works as hard as we work with her and the results have been worth it.

Saturday, September 21, 2013

Abilities Expo Boston! 9/20-22

Amazing stuff happening here at the Abilities Expo in Boston. They have these expos in major cities all across the US. Here is the link: And of course we are interested in seeing this. Wheelchair Dancing!

Sunday, August 04, 2013

*Ten Ways To Diss a Differently Abled Person

1. Make sure to leave your empty shopping carts in the special needs parking space.  Hey, no one was using it anyway.

2. Always park in the special needs space and if that is not available park as close as you possibly can to it.

3. This is an especially good one.  If you have a wheelchair user in your family that you see regularly, don't even consider making entry into your home more accessible.  Because you really don't have the time to consider affordable ramps like this.

4. Ignore the wheelchair user in all conversations and only focus on communicating with their parent or the able bodied people around them.

5.  Don't bother buying the child with special needs anything but grey utility sweatpants and sweatshirts for gifts. After all, isn't that the best thing to dress a person with special needs in?

6. Ask a person who uses a voice output device a question but don't wait for the answer.  Just as they have completed their response after laborious motor planning, turn away and miss the whole thing. Do this several times so that your sincerity really shows.

7. Turn around and frown at the differently abled person when they are participating in community gatherings, because they are ruining your day.

8. Additionally, make sure to shoo your children away from the wheelchair user on the playground, because (loud whisper) what if it's catching?

9. Yell at a parent or caregiver of a wheelchair user for parking in the special needs parking space because clearly the caregiver can walk.  What right do they have to use that space....even if the wheelchair user is actually in the car with them (at the pharmacy picking up meds that the pharmacist was actually coming out of the store to give them)?  But still those spaces are for handicappers only.

10. Use the word "retard" in any context.

Note these top 10 are not in order of importance - they are all important.  Also this list is garnered from my own and my friends experiences. For all of those close relatives and close friends who have considered ramps and slowing their pace down and are just sensitive in general to their differently abled relative or friend, god bless you.  And please consider holding classes for the not so naturally compassionate.

*You'll have to forgive my sarcasm in this post. A situation similar to the 10 I have listed above just happened to us this same day.

Wednesday, July 31, 2013

Guest Blogging At What To Expect Dot Com

Can you believe it!?

Check out my first post in the Word of Mom content area.  Click here to read my post.

There is so much great content on this site and including writing about diverse experiences like mine - which I think is very cool.

Here is the content of that post:

What I Learned by Being Mom to My Beautiful Warrior Princess Daughter

Me and a 5 year old Ellie on a beach in California.
My challenge when I was asked to write for was to decide what to write.What do I have to offer when my parenting journey has been so different?If I write about my actual experiences will it resonate with this community?
In attempting to write for a new community of people, far more diverse than the family, friends, special needs parents, and differently abled people who read my blog, I had many starts and stops. Finally, frustrated I gave up. A day later, while blow-drying my hair, when I do my best thinking, I realized that the "expected/traditional path" is not so commonplace anymore — nor has it ever been. I define "traditional path" as a. getting pregnant, b. having a baby, c. taking baby home, and d. living happily ever after. (Yes, I did read all the fairy tale books my local library had to offer before I was 10.)
So here goes.
I have gained some perspective from getting to be the mother of my beautiful 10-year-old warrior princess, who happens to use a wheel chair, contend with quadriplegic cerebral palsy (CP), feeding and speech issues, reflux, but who also loves life, Fijits, dancing, and school.
When Ellie was born three months early, things went differently than I expected. I spent the first few years of her life worrying and fearing how she might turn out. Not that any parent has ever worried like this before... I did wonder if her CP would get worse, would she ever walk or talk or laugh? I worried, am I parenting her well, am I doing things right, can I handle this? Again, questions no other parent ever asks...
Time is a wonderful thing in that it heals all wounds and addresses all fears through the crucible of experience and the lens of perspective. Now that she is 10, I have a lot of answers to my questions as well as a decade of experience under my belt in dealing with complex situations and making really tough choices. Here are some things I learned:
It's relative. Anything deviating from the expected path of have baby/take baby home is hard. During Ellie's long stay in the Neonatal Intensive Care Unit (NICU), full-term babies would come in for a day or two because they had jaundice. Their parents were just as upset as we were to find themselves peering at their baby, rocking Lady Gaga worthy shades, tanning under the bili lights. The key is to honor your experience and that of other parents. Here's a silver lining for parents of jaundice babies: Our doctors in the NICU said their research shows that such babes have higher IQs.
Parenting muscles strengthen over time slowly as you build up to what you can deal with or find someone to help. I don't subscribe to the credo that life never gives you more than you can handle. In my experience, life has often given me way more than I could handle. I think a more accurate sentiment is that life will always give you more than you can handle because as a species we live in communities versus being nomads. We are meant to work together and receive and give help. Over the last 10 years our family has had loads of help from doctors, nurses, teachers, and other parents who could handle the situations we were facing and either taught us what to do or got someone else to do things beyond our reach. I think when the unexpected happens it's important to remember that you are not alone because it's easy and reasonable to get very overwhelmed. Having a baby is overwhelming.
When I was pregnant with Ellie, she and I had this ongoing conversation. Dave composed songs for her and sang to my belly. We were so overjoyed we didn't worry about the future. Then when she was born three months early we suddenly had a lot to worry about and no prior experience to rely on — like most first-time parents with some added complexities. Today we have parenting muscles that are still being toned by Ellie. But we have help in each other and in our community. It's all worked out into a life filled with love, laughter, and meaning.
You are the expert on your child because you are paying the closest attention — don't forget that. We were very luck to have a great neonatologist who told us right from the start to "watch the baby" versus the monitors. This became a habit and as all parents know — you are observing your baby and small child 24/7. We have had to make a million between a rock and a hard place style decisions and heard very scary prognoses. If I had believed what the doctors told us (basically that Ellie would be a vegetable), I would not have done a lot of the things I did that have been vital to Ellie's development.
No neurologist has the final word, as the brain is still the ultimate black box of medicine. If anything, the doctors as a rule predict the worse — which was their way of trying to prepare parents. In my case it made me fight all the harder for Ellie.
Bottom line is you can't always believe what the doctors say about outcomes because sometimes they are guessing about a future they cannot always predict. More importantly, all children with challenges benefit greatly when they have someone who will make an investment in them. Look at Temple Grandin or Helen Keller or Ellie. The key is not to give up or be devastated by a prognosis so that you lose your connection with your child and your hope and creativity.
Ask each important question three timesto three different experts in order to come to your own best conclusion. We learned from Wry, a fellow NICU parent. When you have to make tough decisions about the health of your child, it's always an exercise in weighing two evils. Which one will help the most with the least side effects? We learned that if you ask the same question of three different experts, you often get three different variations of one answer or three different answers. This really helped us think for ourselves but also weigh our options with different perspectives. This can also be time consuming but for medical interventions that will be life changing for your child, if you have the time, this is not a bad use of it.
Let your love lead you. Your love for and bond with your child is a mystical thing of mythic proportions. My heart opened up all the way when Ellie came into my world. It's the best love I have ever felt (and I love my husband dearly). This love for her has carried me through it all — and continues to. This love makes any challenge I have to go through worth it. Love has many, many expressions. Some expressions of love are subtler than others but if you are paying attention you will find a huge bounty no matter what differences you are facing.