Sunday, August 10, 2014

The Mom I Would Have Been

I first saw this  blog post on April 1st of this year while enjoying one of my very needed nights off.  It had been a very tough week emotionally.  I was alone and as I began reading this post, I realized that I could have been the one to write it (although not as well).  I was only able to read part of it that night because I began crying too hard and emotionally I just couldn't handle it that particular night.  During the previous week, Annalise and I had experienced all but one of the things this mom had written about.


A couple of days later, I wanted to go back and finish reading it and I could not find it anywhere.  Today it has shown up again and I am posting it here on our blog so that I don't lose it.  Over the past almost 4 years since Annalise began regressing, I have shed many tears over the mom that I would have been with my little girl.  I don't dwell on it, but there are moments when something happens and there is a little pain that hits my heart and I have to catch my breath.   I love my little girl for who she is, but I can't help but miss the Mom I would have been to my one and only daughter if things had been different in our lives. 

http://themighty.com/2014/08/the-mom-i-would-have-been/

"The Mom I Would Have Been

Yesterday I met a friend for coffee.  We each had our babies in tow (both little guys, 6 months old and 10 weeks old) and our big girls were at school.  Both of our older children have special needs, and the conversation ebbed and flowed from special needs school stress to sleep schedules for new babies.  As our visit ended, she mentioned getting a group together of moms with little ones, since it can be isolating to be at home with a baby.

Something in me clenched.  I hesitated to say yes, without knowing why.  And then it clicked: here I am, starting again.  This time with a different child, one unencumbered by differences and appointments . . . with him I am just a typical mom.  An average mom of an average baby with universal “problems” (nap schedules, pacifier addictions).  A mom who can watch other babies crawl around and pick up toys and think oh I can’t wait for that instead of oh . . . should that be happening already? I guess we’re late on that one, too.  The mom that I would have been, if things with Maya hadn’t been so different.

And it made me realize that parents of children with special needs suffer a double loss.  The first, the one most often discussed, is the loss of the-child-that-you-imagined . . . the loss of future dreams that might not happen (college? who knows), the loss of skills that you thought would be a given (stairs? maybe someday), the loss of health that people take for granted (I would list specialists here, but I don’t have space for another paragraph). 

But the second loss, you don’t hear as much about.  It’s more personal than the loss of the child you thought that you’d have . . . it’s the loss of the parent that you thought you would be. Where the-loss-of-the-child-you-would-have-had says I wish that my child could play catch with me, the-loss-of-the-parent-you-would-have-been says I wish that I could play catch with my child.
While I’ve shed a lot of tears over the past four years, I’m not sure that I ever realized that some were for Maya and some were for me.  But now that it’s come to mind, I’m going to sit with it long enough to mourn the mom that I would have been. 

I would have been a mom who took her baby to music class and clapped and played happily, without the little clench in my stomach as I wondered if the other moms and nannies were wondering why my baby couldn’t sit unassisted or clap or crawl like the other babies could.
I would have taken pictures of my baby’s comically messy attempts at self-feeding, and scolded her for throwing food on the floor . . . instead of giving bottles for years, doing countless oral motor exercises, and battling to get food in and swallowed, sometimes through mutual tears.

I would have had time for more playground trips, or coffee dates with other moms & little ones . . . instead of being trapped at home by our tight schedule of feeding-therapy-nap-feeding-therapy-nap-feeding-bed.

I would have set my girl loose at the playground gate and sat down to enjoy a moment to myself, watching her run and climb but giving her some space to be independent . . . instead of guiding her safely to the equipment, positioning her feet and hands and prompting her to step-and-pull-step-and-pull.
I would have watched her run up to other kids and start playing, and wondered what they were talking about . . .  instead of holding my breath when she approaches age-appropriate peers, wondering if they will shun her, if she will notice, and how I should react. 
I would have yelled after her to be careful as she took off running with friends  . . . instead of watching her giggle as children run past her so quickly that she doesn’t have a chance in hell of keeping up (and so I laugh with her and say wow! They’re fast! and pretend that watching them and laughing is just as much fun as running around).
I would have reminded her to use kind words while playing . . . instead of standing behind her and translating her noises and gestures for other kids.
I would have met and chatted with other moms, making small talk about the kids and preschool and playdates . . .  instead of shying away because I didn’t want to talk about our life of doctors and therapies with them, I didn’t want pity, and I didn’t want to make them uncomfortable.
I would have taken her on more fun outings . . . instead of taking her to so many specialists.
I would have gone to birthday parties and socialized with other parents . . .  instead of dreading the moment when I walk into the room full of same-aged children and think oh my god, that’s what 2 years old is supposed to be like?
I would have played with her and thought about playing, or maybe let my mind wander to other things (errands or what’s on tv tonight) . . .  instead of thinking about therapy goals and how to position the toys and then move her legs just so, even though it-hurts-a-little-but-it’s-just-for-a-minute-I-promise.

I would have walked her to her to preschool in the neighborhood, meeting local moms and chatting outside . . . instead of loading my tiny, nonverbal three year old onto a bus to ride to a special needs preschool downtown, then walking up to my apartment and worrying about the long ride, and hoping that the matron would be nice and take care of her if she was tired or sad.
I would walk with my girl, or sit in a coffee shop with her, or take her shopping, and pay attention to her and talk with her and never give a single thought to if people were looking at her, or wondering about us, or staring.
I would talk with her, and enjoy the often humorous observations of a toddler/preschooler . . .  instead of spending (literally) countless hours researching, developing and teaching a variety of communication systems, each time hoping that she would be able to learn how to say more things and that I could get a glimpse of what she thinks about.
Parenting would have been a much easier job . . .  but, then again, I wouldn’t have appreciated it.
I would have lamented over seasonal colds and illnesses, saying things like we just can’t catch a break! when we were hit with a few in a row . . . instead of knowing that we were kind of catching a break the whole time by not having any larger issues to deal with.
I would have celebrated milestone moments with enthusiasm and pride, but lost the magic of those milestones quickly . . . instead of marveling at the unbelievable motor feats involved with something like sitting up unassisted, or jumping. (Seriously---jumping----did you ever think about how crazy it is?  Somehow you just will yourself up into the air and your legs make it happen. Unbelievable.)
I would have complained about the hard work of progress---potty training woes, a willfull child who dresses themselves in mismatched or seasonally inappropriate clothing, a kid who jumps off furniture or climbs onto countertops . . . instead of recognizing the feats of strength and coordination and development that underly each one of those things.

I wish that I could have been that other mom with Maya.  We would have had a ton of fun, I think, the Maya-that-she-would-have-been and the mom-that-I-would-have-been.   But I certainly love the Maya-that-she-is . . . and without her, I wouldn’t have become the kind of mom that she needed, a mom better than the mom that I would have been.
The mom that I didn’t know I could be."
            Dana Nieder

Sunday, May 11, 2014

Annalise

It has been far too long since I have written an update on Annalise.  I think that I have been waiting until things in her progress changed for the better, but reality is, the last few months have been very tough on her and we are still waiting for the change for the better.  Maybe by writing out all that she has been going through will help turn the tide!  It's worth a shot!

Annalise appears to have gone through another phase of regression.  She has been sick multiple times over the past 6 months and with each illness it seemed like she moved a little bit further away from where she was.  That usually happens when they get sick, but most times it is temporary and although it takes a long time to recover, they often make it back to their past normal.  This time she just doesn't seem to be bouncing back.  We seem to be dealing with a new normal. Some of the things we have noticed are:

--Increased spasticity in both her upper and lower body.  She is so tight much of the time.  Lots of stretching, massage, and oils help with some of the increased tightness and the pain that comes with it. 

--Probably the biggest thing is her increase in fatigue.  She gets tired/runs out of energy so quickly.  Where she used to be able to walk in her walker most of the time, she is only able to go short distances now without getting so tired that she needs to be carried.  She is spending a lot more time in her wheelchair now then she has ever had to.  She gets tired when she is trying to hold herself up in her chair to eat.  As always though, she has good moments and bad moments.  She still has times throughout most days when her voice is strong and clear, or she is able do more.  We love those moments!  It's just that those moments have gotten a bit shorter and fewer and farther between.

 --decreased strength throughout her body.  When crawling, her arms often give out from under her and she ends up falling onto her forehead.  It's kind of  hard to explain, but her crawl now consists more of just sitting back on her legs and slowly pulling herself forward with her arms while scooting her backside along. Honestly, she doesn't do a whole lot of crawling anymore.  She has gone more to lying on her stomach and pulling/wiggling herself forward whenever she is out of her walker.


--Considerably more scissoring of her legs.  She can hardly walk more than a step or two now without her feet getting tangled.  She has to stop and really focus on getting them apart so that she can keep walking.  It appears that this is more of an issue with her hip rather than her feet and very possibly being caused by her increased spasticity and decrease in strength.   We have spoken with multiple doctors about this over the past few months and multiple times I have heard "it looks like progression of the disease.  There is nothing more we can really do about it at this time."  


Like always, I wasn't really okay with that answer so I started talking with therapists and other moms.  We have found a new type of AFOs that are more flexible and that seem to be helping some.  We are currently looking into a brace (and hoping it will get approved by insurance) that will give her hip some support and help keep her legs separated when she walks.  Hopefully that will make things a little easier and less frustrating for her. 

--The end of January, Annalise had a swallow study done.  They did not see any aspiration, but they did see some penetration which is when the food or liquid goes into the trachea and stays above the vocal cords.  Our GI was concerned about this because if they see penetration during the few minutes of a swallow study, it is possible that there is some aspiration going on as well.  Annalise did have pneumonia this year and does have trouble with getting dehydrated quickly...both of which can be signs of silent aspiration. 


--Annalise has had multiple fits of uncontrolled laughter and/or crying.  It seems to be most evident right after she has been sick.  When I first noticed it, we just thought she was being silly...because she does have those times.  However, as it continued on for about 3 days that time,  and again a few weeks later when she had been sick again, it appeared more and more that it was happening at odd times and places and that she did not seem to have control over it.  After "laughing" for 3 days, she spent about a day and a half having "crying" episodes.  Again, they came at odd times and did not seem to be controlled by her.  After seeing this happen multiple times, I spoke with her neurologist who decided to order an EEG with hopes of ruling out seizures as the cause.

So in April, Annalise had her first EEG.  Although it showed no seizures, the EEG results came back abnormal because of some "slowing of the background".  Dr. Narayanan also said there was a "fair amount of electrode artifact throughout.  But there were times when she had a nice 9 Hz background rhythm".   I still don't completely understand what that means so I will be talking more with him about that this week.  Either way, it looks like the laughing/crying fits are not due to seizures, so why that is happening is still an unknown.   There really are so many things that are still unknown. 

I think those are the major changes we have seen.  Less then a month after the wonderful miracle we saw of  her taking a few independent steps, she got sick and has never completely made it back to her normal.  I have not given up hope that she will be able to take steps again, but as of now, she is no longer able to even stand independently at all...not even for a few seconds.  It is so frustrating to see how long it takes for her to gain these milestones and then how quickly they can be lost again.  So frustrating!


On a positive note...Annalise is one tough little fighter!  She is so determined.  She is independent in every way she possibly can be.  She lives life to the fullest that she possible can and does not seem to want  to waste one minute of it.  As some things become harder for her to accomplish, she figures out other ways to get what she wants/needs.  She is not going to give up this fight easily.


Her imagination is still going strong.  She comes up with some of the funniest and most creative things.  She is beautiful and continues to grow taller and taller.  She often talks about swimming with dolphins and living in a castle.   When I get her up in the morning, she loves to tell me all about the dreams that she has...her latest one is a dream where she is swimming with a pink dolphin.  :)  Overall, she is a happy!


 

Although it hurts my heart to see my baby girl struggle, it makes my heart happy to spend every moment I can with her.  She is the joy of my life, the princess of our home!

Saturday, May 10, 2014

CP Clinic

Yesterday, I took Bryce to the new Cerebral Palsy Clinic at Phoenix Children's Hospital.  The Orthopedic Surgeon that has been seeing our children over the past 5+ years started this clinic because he wanted to be able to give children better care, in other words, be able to spend more time with each individual child then he is able to in the clinic at CRS.  This is where we have seen him in the past and honestly I dreaded every appointment with the ortho clinic there, so I was excited to check out the new clinic at PCH.

Since it was our first visit there, and Bryce needed quite a few "upgrades"  we ended up being there a little over 4 hours.  Usually, I would not be happy about spending that much time for one appointment, but today was different.  Today, all but about 1/2 hour of that time was actually productive.  With the help of the PT/OT team there, we were able to get him fitted and casted for much needed new AFO's and hand splints.  We also got scrips for other equipment that he has been needing at home.  With children like Bryce and Annalise whose needs/abilities vary so much and so often, we need people who understand their needs and who know how to deal with insurance and other companies to help us get the things that they need.  Today I honestly felt like I was able to work with some of these people.  I feel like they listened to me and took the time to work with/get to know Bryce a little better so that they could know what he needed.  It was a very nice change.

 After that, Bryce got x-rays again of his hips which he does every 6 months because of  the hip issues he has.  This was the first time that Bryce did not cry, due to fear, during his x-rays.  I'm so proud of my brave boy!

Then it came time to meet with the doctor.  He and his nurse came in, sat down, and talked with us while checking Bryce over for about 30 minutes.  30 minutes!  I have never had an orthopedic doctor spend more than about 5 minutes with us.  The only bad part was the news that he had for us.  Bryce's hips have gotten bad enough that he is going to need complete hip surgery within the next 6 months to a year.  :(  We have known for a long time that this day would eventually come, but I really wasn't ready for it now.  I guess I never really would have been ready for it though, so it is what it is and we will think about our options, pray about it, and make some decisions.  The doctor did say that Bryce's case was one of the best he has seen as far as the amount of time that the adductor lengthening surgery  kept Bryce from needing full hip surgery.  The plus about that is that the older Bryce is when he receives the hip surgery, the less likely he will be to need another one later in life.  At the age of 8, which is about where Bryce will be when he has this surgery, there is only about a 5-10% chance that he will need it again later.  I hope and pray that he will be one of the 90-95% that will not.

It was a very long day, especially for Bryce, but he did so well!  When we were finished though, he was very ready to get out of there.  So while Bryce was briefly mesmerized by the dancing flower lights on the wall, I made a quick call to be sure our older boys had made it home from school and that they and their dad had begun their trip to the Father and son's camp outing.  I then grabbed some lunch at the cafeteria (it was 3:45 by then after all), and headed back to the Ryan House with it where we will be staying for the weekend.  It was so wonderful to only have to drive for about 5 minutes to get "home" instead of our usual hour and then to have many people here to care for Bryce and Annalise so that I could go into my room and process everything that had happened at the clinic visit.   We are so very blessed to have this home so close to us.  The third one in the US is being built now and my hope and prayer is that someday there will be respite homes like Ryan House throughout the United States. 

Thursday, April 17, 2014

Happiest Place on Earth

The plans for converting one of our rooms into a therapy room has been in the making for quite some time.   Today, a very fun piece of that room was completed.

Last week, Gina from I love murals  came and began painting a mural in our soon to be therapy room.  Today, she came and spent about 8 hours finishing it up!  We may not be able to get to Disneyland often, but this room has definitely become one of our happiest places on earth!


Bryce and Annalise's first reactions to the mural (before it was even finished)  Annalise kept looking at all the different parts of it and talking about each one...especially Micky and Minney!

 To make a long story short, we met Gina through Bryce and Annalise's speech therapist, Laura, who met her while at another child's home doing therapy.  Gina was interested in doing a mural for some children who were going through some type of medical challenges.  Laura thought of Bryce and Annalise and brought me Gina's information.  From there, the rest is history!


Gina first came out to meet us and see our home and discuss where we would like the mural.  We decided on the therapy room.   Gina was so easy to talk to and I felt comfortable with her right away.  After she left our home that first day, I looked at her website and was very impressed with what I saw.  I was super excited to start thinking about what we would like in that room. 


I thought about all of the things Bryce and Annalise like.  I tried to think of something that would be outdoors (a favorite for both of the kids) and something bright and cheery.  They both love Micky, Minnie and most everything Disney and have for some time.   I really wasn't sure what would look good, so I gave Gina some very basic ideas of what I was thinking and soon this idea was born. 

Gina came to our home one morning and began the project.  What once was a plain white wall, was becoming something fun for Bryce and Annalise and everyone who passes through that room.   


Gina worked for many hours that first day and then returned today to finish it.  I can't believe all the detail in this mural.  Gina is a VERY talented person!  It was so fun to watch her work and to talk with her as she did. 




I took this picture to show a little better, the size of this mural.  It's huge!  

Personalizing it!




We all love how she made their names truly look like they were carved in the tree.
I'm going to tell you something that you are not going to believe.  This was Gina's first time doing Micky and Minnie!  First time!  Look how perfect these pictures are and on a first try.  Amazing!

Annalise decided on the color of the ball.






Look at all the detail in that tree.   My older boys were very impressed with everything Gina did.  Actually, so was I!



One very talented and thoughtful person!



The finished product!  I love it.  Bryce and Annalise love it.  The older boys love it.  The cousins love it.  Bryce and Annalise's care givers love it and I am sure that the therapists and all who visit our new therapy room will love it just as much as we do.  


We have found that it is very difficult to walk by this mural and not take a good look.  It is also difficult to keep a smile from your face as you look at it.  It truly makes us happy just having this in our home.   Once again we feel very, very blessed to be the recipients of such a selfless act of service from a person we did not even know.  Gina told me that she knows that her talent comes from God and it is meant to be shared!  She is doing a great job of using her talent for good.  Just this past week, she was approached by someone at Make a Wish and asked if she would like to be involved with them for those children who choose room make overs.  Gina jumped at the chance and will now be bringing a little bit of fun into many special children's lives.

Thank you, thank you, thank you Gina!  What a wonderful person you are!  I am so happy to have the mural, but I am even more happy that I have gotten the chance to meet you and get to know you a little bit.   I am so very happy and thankful to now call you my friend!

Everyone, please be sure to check out Gina's website at http://www.ilovemurals.com/ and pass her information on to anyone and everyone you know who is looking for a mural for their home, office, or anywhere they need a little extra happiness while here on Earth.

Sunday, April 6, 2014

A Fluke?

Well, it looks like the fact that Bryce was telling time may not have been real after all.  Since that week they have worked with him some more on time telling and it appears that 1:00 is the only time on the clock that he consistently answers correctly.  1:00 is an important time to him though because at school, that is the time when the "work" part of the day is over and the social part begins.  Go figure!  :)
His teachers have decided to hold off a while longer before working any more on telling time which is fine with me.  They will still present it to him occassionally and see what they get, but obviously not try to push anything.  However, until that time they will continue working on the other things that he is catching on to.

Reading is one of those things.  He is learning site words...knows about 22 as of now I believe.  He is reading (silently of course) phrases/sentences using these words and then successfully matching them to the correct picture given an option of two. 

According to the report I get home each week, he has been completing "I see a ......" sentences based on a picture shown.  For example, if they show him a picture of a yellow ball, he will then choose, using eye gaze, the correct words to match the picture to complete the  "I see" sentence. 

In math, he is adding two groups of items together and choosing the correct answer most of the time.  He is also able to sort items by small, medium, and large.

He and Annalise both have begun Music therapy at school and are LOVING it.  I knew they would.  One of my favorite things is to hear Bryce "sing" along to songs while we are in the car.  I need to get some video of him singing one of the songs from Frozen or our Vocal Point CD.  He definitely has his favorites!

Friday, March 21, 2014

Telling Time?

Bryce has been holding out on us again.  Or maybe (obviously) I just haven't asked him the right questions to find out what he knows.  I learned this morning of something else Bryce is able to do.  He can tell time!  I knew that he would watch the clock and know when it was time for recess or something like that, but he could have just known what the clock looked like when it was that time...since it is the same every day.  I've wondered about this!

Well, today his Para at school said that she has been working with him and she now knows that he is able to actually tell time!  She has been holding up a clock, setting it to a certain time, 1:00, 3:00, etc, and asking him what time it is.  She then lets him choose (with his eyes) from multiple options.  She said that he has answered correctly with every one of the "on the hour" times that she has asked of him.  Every single time!  She did say that he made a couple of mistakes on things like 1:30, 3:30, etc, but otherwise got every other one correct!  She has just done on the hour and half hour so far, but who knows how much more that boys knows.  I'm guessing it's a lot!

What really amazes me is that no one has ever sat down and taught him how to tell time.  He just knows!  He has just picked it up by observing and listening to what is going on around him I guess. 

Unbelievable, okay, not really, but I am just so thrilled to know that his brain is working as well as I have always thought it was.  I love that someone outside of our home is actually discovering this and continues to find new ways to challenge him and discover what he knows.  

I cannot wait for this boy to get home from school so he can show off for me as well!  :)


Monday, March 10, 2014

Fashion Show Fundraiser

March 15th!  It's less than a week away!


I have to tell you, the goodness of people never ceases to amaze me.  A while back I got a call from my friend Luhanna Chesley.  She said that she, and her Mary Kay director, Linda Christenson, want to do a Mary Kay Fashion Show Fundraiser to earn money for Bryce and Annalise.  Linda is from California and will be coming to Arizona on March 15th just to do this fundraiser for our children.  She is also planning to do one in California as well.  Here is the information on the one here in Arizona.   We will be there with Bryce and Annalise.  Anyone and everyone is welcome to come! 
When:  Saturday March 15th at 1pm.
Where:  8220 E. Garfield St.  Scottsdale, Az.
Cost:  $10 at the door.  
There will be an awesome door prize, and other raffle prizes to be won!
The audience will be the judges, so we need as many people as possible to help cheer on their favorite model.  

I wasn't sure what to say when Luhanna approached me about this fundraiser.  It's a pride thing I guess, but it is hard to accept money from other people and to know that they are putting so much of their time toward helping our children/family when I know that there are so many other families out there who are in greater need and who go through so much more than our family does.  The volunteer models are regular people just like me and you who are giving up their own time to help our children.  Most have never met Bryce, Annalise, or anyone in our family and yet they want to help us.  Wow!  It's just amazing to me.

Luhanna has put my mind at ease through this process and made it a breeze for us.  I am so very, very thankful to Luhanna, Linda, and all of the people who are volunteering as models in an effort to raise money to help with our children's daily care.  Every bit of money that is raised during these fundraisers will go toward the daily costs of caring for Bryce and Annalise including feeding supplies, therapy supplies, durable medical equipment, medical supplies (that are not covered by insurance), and maybe even an adapted toy or two for Bryce.

Again, we are so, so very thankful to everyone who is working so hard to make this fundraiser a success.  I know that I will not even get to meet or thank most of you personally, but I hope that you know how much we appreciate every bit of time, money, thoughts, and prayers that are spent and said in behalf of our children.  We are very blessed!  Thank you!