Boston Strong

I can't believe it was a year ago today!!!  I checked one off my bucket list... ran the Boston Marathon.  What a huge accomplishment for me and a life changing experience.  The fans in Boston are amazing!  I laughed and cried for 26.2 miles as they cheered exuberantly for all athletes.  With my name written on each shoulder there was never a dull moment as they cheered for me by name.   Hearing them call out "Mel" as I passed gave me the motivation to get to the finish line.  It wasn't my best race in terms of performance but I savored every mile. 

The race course in Boston is a beautiful place to run with historical sights and traditional perks like running through the Wellesley College Scream Tunnel.  With fans stacked up 6 people deep from the start to the finish, I realized that what makes Boston so unique are the spectators.

Within a short time of finishing the race we watched as everything fell apart.  I still remember standing only a block away watching emergency vehicles race past and wondering what had just happened.  Then being taken in by some of the locals.. watching it on TV... feeling numb.

Without a doubt, I know that my Heavenly Father kept me out of harms way.  I am grateful that I was able to return to my boys unharmed.  I am grateful the Boston Marathon will continue.  What an inspiration it is to see those who were affected prevail.  Boston is filled with a great people who love their tradition.  Boston will Stay Strong!

10 YEARS OLD!

This kid is the light of my life!  This past week we celebrated his 10th birthday.  I have lots of emotions when I go through the events of the past decade.  It has definitely been the most difficult decade of my 4 but also the most rewarding.

When I started this blog I desperately needed to link in with the rest of the world of special needs moms.  I leaned on you for understanding, advice and hope.  Through the years I watched as your children progressed and I cheered with you as they did so.  More than anything I wanted to see my son progress... but he didn't.  I. Stopped. Blogging.
I am sorry.  But life was busy and I was desperately trying to keep a marriage together and nothing I could do would save it.  We divorced and within a year I was remarried.  I am grateful that I have Brian in my life now.  When I got divorced I didn't think anybody would be interested in taking on a mom with 3 boys... one with special needs.  Instead, I was blessed to watch Crew and Brian create a bond.   It is incredible.

Moving, starting a new job and getting married has really uprooted my world.  I miss my friends, my neighborhood, and running.  I am really struggling to find the balance that I need to be happy.  These issues mainly have to do with me being a little bit introverted and I hope to soon feel like this place is my home.

I look back on the last 10 years with Crew.  I am a firm believer that Crew was sent to me for a reason.  My situation with him has pushed me to rely on prayer to get through.  I have a close relationship with my Heavenly Father and Jesus Christ.  I have a testimony of the Plan of Salvation.  As for now, I am grateful to have this sweet little boy in my life.  He gives me the best hugs.  And while I may never hear him say, "I love you" verbally, I feel him say it 100's of times a day.  I feel blessed.  Happy Birthday Crew!

Grandpa's barn

 Grandpa has been working for years to clean up his farm.  This farm is not only where my 6 siblings and I grew up but also my dad and his 6 siblings.  This barn has a lot of memories but was becoming somewhat of a hazard.  My dad decided it was time for it to come down.  The local fire department was scheduled to come out on a Saturday morning and do a controlled burn.

 Because boys like trucks and fire, I knew this was something that would make Crew happy.  We were about 15 minutes late getting there so we missed getting a before picture.  Half of the barn went down before I could get out of the car.  Dad used a little diesel to speed things up..

The volunteers could see how happy this bright red truck made Crew so they were more than happy to let him sit in the front seat.  They turned on the siren which he LOVED.  I was actually considering asking our local fire department if Crew could ride with them for the 4th of  July parade until they honked the horn a few times and that did him in.  He really tried to be brave but the noise was a little to low on the bananagram for his liking.

As a child this barn housed over 1000 rabbits which I was responsible to feed daily.  A few years later when dad was done with the rabbit business it housed mama pigs and their babies.  Once again it was my job to feed and clean up the mess.  I will never forget the smell!

Goodbye old barn!

FORGIVE ME PLEASE

He looks ticked off in this picture but he is actually in a really good mood... jamming out to the music at his end of school BBQ.  Crew finished 1st grade and while we have been happy with the school for the most part, we are looking forward even more to next year.  I feel a change of teachers will be really good for him as we struggled with the teacher he had this year.  I could go on and on about our communication frustrations with his teacher and her lack of expertise in dealing with Special Ed but enough said already.  His teacher did not qualify him for ESY and she did not recommend that he attend the summer school program even though he did not pass his IEP goals and tested out at the level of a 13 month old.  The director suggested that I make a case about it but quite frankly I do not want to get all worked up over it so we are going to focus our time on therapy and getting stronger.

Crew is the light in my life.  He is a blessing in so many ways and I am grateful to be his mom.  I am grateful for the learning opportunities that come with being his mom and the growth I have experienced with all of it.  With that being said I have to admit this time in my life is very LONELY.  It feels like there is no one who understands it... the emotional, physical, and financial stress involved.  We are constantly stressed to the max in our home.  It takes all four of us to take care of his needs.  The amount of time involved calming, feeding, therapy, toileting, entertaining... it is exhausting.  Crew's doctor at Primary's is just as perplexed as we are.  Currently he is taking medication to help him sleep and yet I am getting up at all hours of the night.  Several times a week he wakes before 2 or 3 AM and is awake for the remainder of the day.

This loneliness or sense of isolation is hard to ignore and it takes everything I have to keep from getting bitter.  Living in an area where people are generally service oriented and watching people dish out service left and right to each other all the while ignoring our existence.  Well... that's how it feels anyways.  I have uttered countless prayers asking for forgiveness for the negative thoughts that I have about it.  I have fasted and I have gone to the temple hoping for some peace which has helped.  I have made more of an effort to serve those around me and within my church.  I'm trying to accept that we will just continue to go through this alone.

Despite my lack of sleep, I have manged to finish the training program for a marathon that I am registered to run on Saturday.  It has been a rough go this time around.  I've been battling several injuries over the past 6 months.  Still... at this point wondering if my body will hold up for another 26.2 miles.  Even considering getting a bone scan on my big toe which has been bothering me.  *sigh*

So many of you are dealing with disabilities or illnesses which are more involved than what we have going on.  To you, please forgive me.  I apologize for being such a whiner.  I have not posted for months due to this.  It just isn't fair for me to complain when so many others are going through such difficulties.  How do you do it?  Do you have any suggestions for me to get over my loneliness?

A couple weeks ago in my church where I co-teach the 16-18 year old young women, it was brought out in a lesson the importance of journaling.  It was suggested that it is good sometimes to write down the frustrations as well as the good things... for posterity sake.  I hope in doing so I haven't just shot myself in the foot.  If so, it will just be another hard lesson learned.  LOL.

"as long as it's healthy"

This phrase is one that causes one to ponder...

My brother and his wife are the proud parents of 5 beautiful daughters! My interactions with their family always leave me in awe as I am so impressed with their thoughtfulness and wisdom in raising such kind, talented little girls.

I visited them a couple years ago as they were expecting their 5th child (of which they did not want to find out about the gender). I noticed right away that when others inquired about the gender or made comments indicating that maybe they "will get THEIR boy" my sister-in-law was quick to say.... "We will love whatever we get".

This comment from a wise mother who didn't want her daughters to ever feel like they weren't wanted.

Due to my employment, my days are filled with interactions among pregnant women. Pregnancy, for the most part, is an exciting time with a large focus on "what they will get". Quite often it is made clear that maybe they are a little disappointed to find out "it's a boy", or "it's a girl" depending on their desires and situation. Inevitably, they will almost always say... "it doesn't really matter as long as it's healthy".

*gasp*

How can I not feel a somewhat stunned by that comment? Why does it feel like a slap in the face? Why does it hurt so much? Why... because it feels like they are saying, "As long as he/she isn't like your boy"...

I want to say... "what if it's not healthy"? Then sometimes, I really just don't want to hear the answer.

Communicating with Educators

Crew's teacher this year is fairly new and I'm not sure how she feels about having Crew in her class. Additionally, we have somewhat of a face to face communication barrier between us as she is deaf and my ASL skills are limited. I have been in knots about the negative feedback we have been getting daily which is relayed through the bus driver and aide. I just don't think this is acceptable even with the communication barrier between us.

How would you handle a situation like this? When I ignore the problem it just seems to fester so decided to try to tackle it head on. I hope I didn't just shoot myself in the foot but here is the reply to the teachers email regarding my request for a parent/teacher/director meeting.

Tell me what you think? Should I just go crawl in a hole now?

Hi J.....! I really do appreciate the update. You have been so great with Crew and when I have stopped in at the school I am always pleased with how everyone interacts with Crew. I hope he is making progress enough that people feel like his time there is worthwhile. I'm happy to hear that he is getting around the school with various means (walker, wheelchair, bike). That is so appreciated especially during these cold months when I can't get him outside on his bike. Crew loves all of those activities including swimming and dance.

In my heart I know he is a very bright child. I can see the wheels turning when he works on chores at home, interacts with his ipad, and even watching cartoons. Developmentally, I am seeing some progress and it is such a delight! We are working hard at home to improve his nutrition and to provide a variety of activities to stimulate his mind and give him exercise. I know it is a lot of work (my body reminds me daily) but I hope it will pay off over time. Thank you for taking part in helping him find success during such a critical time in his life.

It is so hard having a child that cannot communicate. I do not know what he does at school, who he plays with or anything without communication between you and I. My main concern is that it has been a really long time since I have heard anything positive and as you can imagine that is very frustrating and hurtful. We try so hard not to use labels with Crew yet almost everyday I get reports that he is "indecisive" or "uncooperative" (relayed through the bus driver/aide). One big concern I have is that if this dialog takes place between adults at the school, I'm sure his other classmates are picking up on it. Our main goal with Crew's education is that he is accepted and loved. We want him to have a positive experience when he is away from the home and to feel good about himself. Please don't report any negative behavior with the bus driver and bus aide unless you are concerned that he is sick or unless he has had a seizure. They love him and go far beyond their job descriptions to provide a positive atmosphere. I want to keep it positive but when they bring him home they usually relay the information given to them about Crew's behavior and then the other kids on the bus pick up on it.

The best way to communicate with me other than phone is by email or text (xxx-xxx-xxxx). I appreciate your cooperation in this matter.

Warm regards,

Melanie

Same as Before

So... I've been gone from blogging world for awhile! Yes, over a year!!! I think about all our little cyber friends often and hope all is well. Originally, I started blogging as a way to connect with other moms who are struggling with their little miracles. For many years it saved me... As I have watch the kids Crew's age who live locally progress and move on I am constantly reminded of how different our journey has been. But then to watch the micropreemies and other kids with challenges progress and surpass where we are it creates a different pang of discomfort. Why are we making such little progress? Is it something I've done wrong or not done well enough? How do I balance my time between 3 kids and still provide well enough for all of them.

Often times people will ask how Crew is doing. How do I answer that question? Sometimes I try to tell them that we are really struggling but is the truth really what they want to hear? Truth of the matter is... I've been gone for a year and quite honestly...we are the same as before. Struggling. Struggling to communicate, struggling to ambulate... and FRUSTRATED! The frustration isn't going to go away. I just need to learn how to manage it. We have seen multiple doctors, therapist, and tried many medications and it seems we are back to square one.

The last few months I have had numerous experiences that have caused me to reflect on where we are in this journey. It has been super hard. Knowing that this journey is a lifelong journey can be daunting but I am eternally grateful for the experiences I have had. I am not the same person I was eight years ago and I know that these experiences have molded me into a stronger person. I am also so grateful for the light that Crew brings into our home. He is a delightful little boy (when he is feeling well) and his contagious smile and infectious laughter is a blessing to our family. I know that our little family is together for a reason and all of us need each other. That may sound strange to some but it is what I know.

Hope to post some updates soon and get back into picture taking mode. Hugs to all!

Changes

We moved Crew back to the Deaf School today! The past two months have been a roller coaster. We pulled Crew from his class after hearing reports of neglect. We've complained to the principal and also the director of Special Education and the sad thing is I doubt any changes will be made. It is so unfortunate that this teacher feels she is cut out for Special Education because she really should have nothing to do with children.

So Monday we had his IEP and decided to place him at USD again this year. I met the teacher and aide today and felt so grateful for the happy atmosphere there. It was short day today. I will drive him again tomorrow while they finalize transportation plans then he will be bussed.

Halloween is upon us! The pirate costume wasn't the plan for Crew but I accidentally grabbed the wrong size while shopping for H. Now that we have it I am pleased! Doesn't he make a cute pirate? Ahoy, there matey!

Sucky sucky SUCK

My child is severely delayed. SUCKS!

My child isn't making progress. SUCKS!

I just moved my child school districts in hopes of helping him progress. New teacher SUCKS!

I don't think I can trust my instincts. I SUCK!

Crew has not brought home one thing from his class this year. Besides Resource, I haven't seen one stinkin' paper. No art project, no crafts, no coloring cutting or pasting. Crew has not played on the playground equipment at school even ONCE! The teacher has actually parked him in the hall for screaming (which he does when he needs attention or when he is excited).

Not only is he non-verbal but I get rewarded with a handful of hair, a slap in the face, teeth in my flesh....

Oh yeah, and a million kisses when the day is done and again at the start:) I don't know who is more confused... MOM or CHILD.

Summer

It's seriously been so long since I've posted that even I was wondering if I was done! This is the first summer that I've worked during the same hours as Carl. It's been an adjustment leaving the kids home alone. Well.... Crew has respite care about 50% of the time but the older boys are doing their own thing when they aren't taking care of brother.

The boys have been really good. I leave them with their job lists and they always get it done before I get home. We've really taken it easy this summer.. no sports. Just scouting and piano for S and therapy for Crew. H has literally taken a huge step back from playing sports. He graduated from the Cub Scout program early so at this point we are just waiting for him to turn eleven so he can start up with scouting again.

Struggling.... yes, we've really been struggling with Crew-- literally! When he is happy he is absolutely delightful but then we have this other little boy who comes out frequently. This other boy is a fighter, a screamer and he is frustrated. So frustrated in fact that I have the bruises to prove it and hair loss too! It really is becoming a huge problem. We dread taking him out in public so much that we avoid it at all costs. If I have to go somewhere, I usually take S to sit with him in the car while I run in to do my errands. We can't make it through church, the movies, or an outing for icecream. It really is interesting. I keep reminding myself that this is the same little fighter that survived a birth without oxygen, 7 days on a respirator, and six-years of rehabilitation. We have many more to go.... I keep hoping to stretch those happy moments out a bit. (Picture taken on the 4th of July while driving through smoke bombs)

Awwww....

Love these moments... S sharing his brand new ipod with little bro!

California Trip 2010

I think this is the first year that we actually left Utah for spring break. Disneyland and the beach is something I've been wanting to do for a few years now. Disneyland was a first for my kids and neither Carl or I had been in over 20 years.

We got the 3-day park hopper pass for Disneyland and California Adventure, spent one day at the beach and surprised the boys with Angels tickets on the last day.

While planning this trip we went back and forth many times trying to decide... do we take Crew with us or leave him with family. We weighed all the pro's and con's and really tried to think what Crew would want. Leaving him behind is tough because the family isn't complete and we miss him terribly but the truth is that he wouldn't have enjoyed the majority of this trip.

Our respite plan is set up so we can get just that, "respite". We decided that not only did we need the little vacation but the older boys could really use some one-on-one with us.

Our day at Huntington beach was beautiful! It was warm with kind of a crazy breeze. We walked out on the pier, collected seashells, went swimming and simply just laid around.

I don't know what it would be like to take really little children to Disneyland but I was appreciating the fact that my kids were bigger. They really had a good time. Our feet got so tired walking around all day, I can't imagine dragging a young one along.

Now that we have been and know what to expect we are planning how to take Crew along and have it be a good experience for him. I think we will wait a couple more years. It sure would be nice to fly next time and stay in one of the hotels right next to the park.

Can't wait to do it again!

My Birthday

The kids actually spent my birthday at Grandma's. This picture was taken a day early. I worked the morning of my birthday and then Grandma came and picked up H and Crew. Stockton headed off with his scout group for an overnight camp out.

Carl took me to the city where we met up with friends for my first ever Korean BBQ. It's been a long time since we've gone out with the friends and we really had a great time. The company was awesome and the food pretty good too;)Afterwards, we stayed the night at the Hilton. The next morning was the most memorable part of the weekend. Carl and I got up and drove to Memory Grove Park where we headed up City Creek Canyon for a run. The temps were low enough that we had to bundle up but were warm enough once we got moving. We ran a total of 10 miles. As you can see from this chart, the first 5 miles were uphill. Good times!

Phenol Injections

The past month has been crazy around here. The day after Crew's birthday we headed down to Primary's for phenol injections. We've done the botox several times but it just hasn't been making a huge difference so we decided to try phenol. With the phenol you have to be sedated. It was a very minor procedure. They checked us in and we waited in this boring room for about an hour... no magazines, no windows, no toys. I was really feeling sorry for those who have to spend very much time in the hospital.

Once they took Crew back we waited about 15 minutes before we got to see him. He did really well recovering from the sedation. Once he was eating and drinking they sent us home. The nurse got a kick out of Crew's passion for cheetos. He wouldn't take his eyes off the cheetos and the bag was gone within a few minutes. This was great for us because we were discharged quickly.

Phenol was injected into his hamstrings and adductors. Botox was injected into his hamstrings and gastrocs. I had no idea how much the spasticity in his adductors was limiting him until it was reduced. We are seeing a huge improvement in Crew's mobility. Not sure how long it will last so we've been doing lots of walking and physical therapy since.


Little man likes to dress himself;) His shoe fettish usually involves dress shoes and quite often chooses non matching shoes. I got a kick out of the "two left feet" on this particular day. What I will do to keep him happy! *sigh*

6th Birthday

Today has been a very very good day. Crew woke up with a smile on his face and it has stayed there all day.

At his school they combined all three preschool classes for a birthday celebration. I sent ice cream. As soon as I opened the door to get him out of the van, his little friend turned to me and signed, "Ice cream at school today". Well, at least thats what I got out of it with my limited ASL knowledge;)

We did the "tie the balloons to powerchair" tradition and let him parade back and forth through the cul-de-sac. Its my way of letting my non-verbal child shout out, "HEY EVERYBODY, LOOK AT ME... IT'S MY BIRTHDAY TODAY" which is what I think he would say.

Today was a beautiful sunny day... dry roads and clear skies. Completely opposite of the day Crew was born SIX years ago. So unlike the blizzard conditions that nearly cost us our lives on February 4, 2004. It's impossible to celebrate a day like today and not think about it. I do get sad when I think about all that we've been through but today hasn't been like that much. I feel so much gratitude for having Crew in our family. Gratitude for the sweet spirit and light he brings into our lives. Gratitude for all that I've learned on this journey. Gratitude for the person this experience has molded me into. It has made me stronger and more sure of myself. I don't take the little things for granted. Every little noise or gesture he makes is noticed. I've learned a language not taught in books or in school, a language that can only be learned by living it. His eyes, facial expressions and body language speak volumes. It isn't a language we learn by choice but necessity. I'm so grateful for his hugs and his kisses.

Crew, it's been a great six years. I can't wait to see what the next six will bring. Oh, but not too fast little buddy...

Snowbasin Dew Tour

A couple weeks ago we went to Snowbasin to watch the Dew Tour. This was my first time visiting Snowbasin other than the night we ran the Wasatch Back. Most of our state has been stuck in an inversion. The ski resort was high enough that we climbed right out of the inversion and into the sun. It was so nice to spend a few hours in the sun. Seriously, I think these long Utah winters can really get to you!

The event was completely free... we even got to ride the high-speed quad up to the half pipe. We climbed up and stood to the side of the half pipe. It was really neat watching the skiers fly up over our heads.

I couldn't believe how many people were totally unprepared for the snow. Probably 90% of women had on Uggs or some knock off or another. Those boots totally suck in the snow and ice. LOL. I really got a kick out of watching these women struggle to climb the hill. Gosh, that really makes me sound cruel doesn't it! Every single time these boots would either cause her to cling to the makeshift fence for dear life or slide down on their backsides.

The boys walked away with lots of free samples... this and that- Beef jerky, Utah Ski stickers, pizza rolls, chapstick.

This guy flew up over our heads and said "hey" when he saw us standing there. Totally cracked us up!

Sheesh, If we had known this giant chipmunk was going to be there we would have totally brought Crewzer along with us. LOL. At least he's warm;)

IEP goals and other random facts

Crew had his annual IEP last Friday! I feel quite good about his IEP team. The PT and OT were there, audiology, speech, special education teacher, and a representative from our home school district. Everyone seems to have Crew's best interest in mind. Creating goals and finding the best fit can be a challenge as each year creates a larger span between him and his peers.

I hate putting it in writing but part of being real is facing the facts... Crew is testing 1 year 9 months in language! This score included sign, verbal, eye gaze, and eyebrow movement as language response.

Crew will be SIX in a few weeks.

*sinking heart*

The school audiologist had another scare for us. At the most recent hearing test, results showed a profound loss in Crew's right ear which means he basically did not respond.

*gulp* and *breathe*

When this was brought to my attention I tried to joke around a bit... "I've been talking in the wrong ear", I said. It wasn't funny.

On a positive note, there is a good chance Crew just wasn't in the mood to be tested. He may have been ignoring the sounds, just because. Sometimes Crew folds in half or shuts down when he isn't happy about something. I'm thinking this is probably what happened but there is always the fear that his hearing loss will continue to progress. More tests will be done again soon.

We elected to keep Crew in the deaf school for another year. I will post his 2010 goals here later this week.

SNOW CONES?

Keeping Crew entertained over the holidays was interesting. I didn't feel well and he didn't either. We've both had this horrible cold for almost 2 weeks.

One morning I went out and scooped up some fresh snow, brought it in the house and we played. At first Crew wouldn't touch the snow. He is very sensitive in the sensory department. By the time we were finished he was chucking handfuls of snow at everybody. Good times!

Extended

The truth of the matter is... I really enjoy spending time with our extended families. Unfortunately for me, it seems we spend less and less time with them as the kids get older. Without getting into the details of "why not", I do want to document the time spent with both Carl's family and mine. The day after Christmas we traveled down south to spend time with Carl's family where we celebrated Christmas and his parents 50th wedding Anniversary. On the 29th, we traveled north to celebrate with my parents, siblings, nieces and nephews. Both parties were a lot of fun and I really enjoyed being together.

Here is a random mixture of family pics from both parties:

Long Time

In 3 1/2 years this is the longest I've gone between blog posts. I really kind of miss the bloggy world. We are doing well....

S is enjoying school this year, just finished the first trimester. Currently he is working on his science project, "How Does Caffeine Affect Blood Pressure?" The results will be interesting. We need to find young boys whose parents are okay with them consuming 24 ounces of Diet Dr. Pepper in an hour.

H has been blessed again this year with a great teacher. He is enjoying cursive writing and outside of school is working on his Arrow of Light award. Arrow of Light is the highest award you can earn in the Cub Scout program. We are well on our way and his birthday isn't until August.

Crew is still attending the deaf school. We are seeing some progress with him not only in sign but also Pre-Speech sounds. Lately, he has taken more of an interest in books... a little less chewing and stacking... Oh, I think he finally realized there are pictures on the page. LOL. We are FRUSTRATED in the sleeping department. Every night I end up with him in his bed which consists of a crappy mattress on the floor. My back hurts so bad in the morning and my hands are usually completely numb. The other alternative is to get up with him 3 or 4 times a night so I finally caved and just started sleeping with him once he wakes the first time. It seems Crew has outgrown his AFO's again. We are going for an overdue visit with the PT on Tuesday. I'm hoping he will be able to adjust the braces somehow.

The Thanksgiving holiday was great. Carl's family came for the day. We had 22 people in my little house. We don't get to spend much time with them so it was well worth the effort.

I'm still running nearly every day. The last few weeks have started getting pretty cold... sub 20's. I realized this year that I've enjoyed November a lot more since I started running. You never know what weather you will get in November and its kind of exciting. One morning I actually came back home and changed into shorts, some mornings are freezing, windy, sometimes ice. It's an adventure that reminds me to get out and live and one of the few things that helps me get through the day.