Thursday, December 31, 2009

Hey! You're Just Like Me!

Earlier today I was at Central Market gathering a few items for our impromptu, kid-friendly New Year's Eve shin-dig at our house. As I was preparing to pay I noticed the woman and child behind me in line. The child was in a stroller and may have been about 7 or 8 years old. The little girl appeared to have cerebral palsy and was asking her mother in an affected voice to hurry up. I immediately wanted to bond with this woman and her daughter. I longed to run up, hug them both and tell them that I also had a daughter with cerebral palsy...that I was just like them...that my daughter, who is old enough to walk, may never...that we get curious looks while at the grocery store...that we are trying to get by the best that we can.

I was afraid that this may have come across as rude or intrusive, so I didn't say anything. On my way out the door, I looked back and almost went back but didn't. Should I have? How would you feel?

Friday, December 18, 2009

Ice Skating Princess

Kat Kat decided she wanted to do something special with each one of the triplets on their own. She took Mack to see the trains at North Park and took Sophie ice skating (Grace gets her trip later). To my surprise, Sophie picked ice skating for her trip. We have never been and I'm not sure how she knows about it but that's what she wanted to do. I was very excited for her but a bit sad...someone else would get to do this with her first. I guess I feel guilty that I don't spend more one-on-one time with each child. Grace gets her one-on-one time through therapies only and the other two just don't get any. I'm so thankful for Kat...we are so blessed to have her in our lives but I really need to start being a better mommy...I need to start spending time alone with each...just how do I do it...I feel I am spread so thin....

Maybe next year




Thursday, December 17, 2009

Hello 9-1-1

Monday afternoon we were playing with our friend Evie in the backyard. Four 4-years olds and lots of fun. The kids were pretending to make food with sticks, leaves, flowers and various nuts berries. I was helping them gather the "goods". They made a beautiful spaghetti soup and we called it a day so I could go in and make a real dinner. The kids were watching television quietly and then I hear Mack say "help me, help me". Not being a mom that jumps to the worst conclusion automatically, I calmly picked him up and started talking to him. He then started shaking and turning blue and was really warm. He said his tummy hurt and after asking, I discovered that he had been eating the flowers and berries that I specifically told them NOT TO EAT! THEN I panicked and called 9-1-1. The paramedics came and the neighbors came running over. Needless to say, all is well now and we don't know exactly what happened because the paramedics said he would need to ingest a large amount of berries to get really sick...maybe it was the pecans...and he never threw up. I slept (didn't sleep) with Mack that night and just made sure he was breathing every few minutes. Our first 9-1-1 call and hopefully our last.

The Famous Spaghetti Soup

Friday, December 4, 2009

Hello Lover

I'm in love!! And no, Shelly, Kat and Coleen, not with Robert Pattinson! And not with Edgar Allan Poe pictured below...even though he has that mysterious tortured soul thing going on that I always liked.

I am in love with my very own sweet Kindle. Little did I know when he/she/it arrived in my mailbox as a birthday gift from my sis, bro, mom, etal, that I would be so smitten and that we would become so close. I long for the times when it is completely quiet and Kindle can rest in my hands sending me pieces of shocking, funny, sad, dramatic literature...we laugh and we cry. I am even thinking all the holiday travel will not be so bad now because I have Kindle. I can read while Abe drives and if I finish a book...I can just download another!!!! As an added bonus there are even some of the classics that you can get for free!!!! Free I tell you!! I have even purchased the cutes reversible orange/blue case and light. All is right with the world when I am with my Kindle.

So, if there is someone you really love, get them a Kindle for Christmas...unless you get jealous ;)

Tuesday, December 1, 2009

Muck and Mire

I think I'm finally coming out of my funk...at least let's hope so for my husband's sake. I can't really explain why, but I tend to get a little out of sorts as the holidays approach. I become overwhelmed with all the activities and expectations...mine and others. My routine is messed up. I can never find the perfect gifts. I always spend too much money. There is a lot of packing and unpacking as we travel about. I miss my dad. We are considering scooters for Mack and Sophia for Christmas, but what about Grace. It all just culminates in one big pile of funk. Abe just doesn't understand..."we have so much to be thankful for"..."we are so blessed" he continues to remind me. YES I KNOW!!! I know that we are very blessed but let me work through my funk. It's the only way, just let me deal with it.

In the midst of all my mire, my kids continue to grow and amaze me. They continue to love me unconditionally while I feel at my most unloveable. They are so excited about Christmas and everything it brings...Jesus, Santa, lights, cookies and of course, presents. Grace continues to get stronger everyday even though I am quite lax on her exercise routine. She is currently standing 20 seconds unassisted!! Here she is standing with a little help from the sofa. Thank you God for the blessings....I'm starting to see the light.


Sunday, November 22, 2009

I Know It's Early But...

we decorated our Christmas tree tonight. Typically, I need to eat some turkey before I can even think about it, but we are going to be in Oklahoma next weekend and we were feeling "the spirit". As is the tradition, Kat Kat was there and Abe made hot chocolate (even though it was 70 degrees today). We pulled out the Santa hats that are now too small and all the books about Jesus' birth. The kids were so excited and I could barely contain them. We learned what the word "fragile" means and only broke one ornament (actually I did it) as opposed to four that Mack broke last year. The trio are all so proud of their work and even though there is a heavy concentration of ornaments on the bottom of the tree, it is perfect!






Wednesday, November 18, 2009

It's All About the Potty

At one time, I had thought that Grace would be the first of the triplets to be potty trained. About a year ago, she was telling us when she needed to potty and we were well on our way to completing the Tinkle fairy chart.

Well, it is a year later, Grace is 4 and is not potty trained. We have tried everything. Sticker charts, rewards, the threat of wearing diapers to college...we have even tried to shame her by continually repeating..,"You are the only one in your class still in diapers and you may be kicked out of pre-school".

I have thought at times that maybe she is hindered by the cp...maybe she doesn't really know when she needs to use the bathroom, but I'm not sure I believe that. Why would she tell us sometimes and others not. I honestly think that she is fine with the way things are and doesn't mind using the toilet when she just "feels like it".

We now have the cool toilet seat with the toddler seat built it!! Since Grace is now able to sit up on her own, we purchased this in hopes that she would be able to sit on the smaller seat on the big potty and no longer have to use the "baby potty". It's a hit...she loves sitting on the "white potty" and is even now using it properly (and not just a place to read :) She also likes that she has easy access to the toilet paper, because you can never use too much. Wish us luck...we may be on our way to being totally diaper free!!!!



Friday, November 6, 2009

Well, I love YOU!

Although Grace isn't moving around like a typical 4 year old, she is developing some of the typical avoidance tactics when it comes to doing what mommy wants her to do. Her exercises at home have become quite the battle. I have had to become really creative in motivating her to walk, stand, kneel with high knees, etc. She thinks it is so funny to tell me "No!" and then assure me that "I don't love you." Ouch!!! That hurts!! Does she really not love me? Where does that come from??? Where did she learn to say that? Does she resent that I "make" her do therapies and exercises? Will she blame me for everything?

Grace, no matter what...I love YOU and I always will.

Grace and her beloved NiNi




School Pics




Tuesday, October 27, 2009

Hey Guys...I'm Over Here


"Hey guys!! I want to play with you!" Grace yells from the sofa, as Mack and Sophia are building castles on the floor. This request is now being made at least once a day along with...I want to run with you Mack...I want to help you Soph...etc.

Grace is still not very mobile. She can crawl and get into sitting (which is huge) but getting somewhere in a hurry or walking without assistance is not happening, so many times Mack and Sophia have moved on to something else or quite honestly, are not interested in waiting on her. This used to break my heart but now I look at Grace and see that she doesn't seem upset...she seems to let it all just roll off her back and she also moves onto something else. I think she is so much more resilient than her mommy.

There are also those times however, that Mack and Sophie do include her...they want to play with her and Grace is never as happy as those times. She loves her brother and sister and any kind of contact she savors. There was that morning that I went into their room and Mack had crawled into Grace's bed and is reading to her. Those are the best times...those are the times that I see how much they love each otherand those are they times I savor (I was so happy, I didn't get a photo...dangit!!)

Monday, October 26, 2009

I Need To Take My Temperature...MYSELF

Last week was VERY long. Sophie had pneumonia, Mack and Abe both had H1N1 and I had many sleepless nights. Somehow, Grace and I have managed to stay well. Grace is usually the first to get everything and has the hardest time dealing with illness, so we are so thankful she is flu-free right now. We had gotten the regular flu and first does of the H1N1 vaccinations but not soon enough. For a few days Mack and Sophie (and Abe) had pretty high temperatures, so I always had the forehead thermometer ready and used it very often. I think Grace must have felt left out because now she is always wanting to take her temperature..."MYSELF"

btw...I am thinking maybe the kids should be taking probiotics. What do you think? What kind should we do?
video

Tuesday, October 20, 2009

I Can Do It Myself

The older and stronger Grace gets, the more independent she wants to be. She often says "I can do it myself" or "Let me do it!". If she succeeds, she love to exclaim "Look mommy!! I did it!!". Many times however, she works on the task for a while and then says "Mommy, how do you do it?" or "Will you help me?".

If she eventually asks for help, there is no frustration or defeat in her voice. She just wants help...either assistance or (mostly) more instruction...simple as that. I love her independent spirit and know that she will need it as others discover her disabilities and want to help her with everything or even shun her. But I often wonder if that independence will subside as she discovers her limitations...will she become frustrated or defeated or will she adjust and be her happy, cheerful self. As she is now becoming confident in trying things, I wonder if that will be taken away too soon. Will people always insist on helping...not to be harmful but because the want it done faster or just want to be helpful (I am guilty of this)? Will she lose that confidence and see herself as so many people will...just a disability?

Trying to screw the lid on.
Realizing she can't do it without help.

Wednesday, October 7, 2009

Sophie and Grace Meet Barbie...sort of

We went to see Barbie Saturday at Potty Barn Kids. Since I could not describe the adventure any better than Kat, I will defer to her....Check it out!

Tuesday, October 6, 2009

Thoughts on Therapy

A friend said to me yesterday..."If someone told me that it would help my child, I would hang them upside down in the backyard by their toenails." That seemed to sum it up for me. We do what we can, no matter the cost, no matter the time commitment. We love our children so much...we want to cure them...make them well...make them "normal"...make them happy.

We haven't done it all, but we have done a lot. Grace has done occupational therapy, physical therapy, hippotherapy, osteopathic manipulative therapy, conductive education, PERCS, pilates, yoga. We've spent lots of money on AFOs, orthopedic shoes, standers, walkers, special benches and seats and other equipment. We've traveled, gone into debt, and as ashamed as I am to admit it, we have ignored our other children's needs. I've even felt guilty that we haven't done other things, such as hyperbaric therapy, ABR, etc...very expensive therapies. I feel like I am in the tornado looking for the wizard that can solve our problems...or what I think are our problems...Grace's CP.

I received an email a few weeks ago from another mother. A mother with a child that has special needs. A mother I have not met, but have corresponded with via email. She is amazing and I follow her blog and often her advice. I cry with her and I rejoice with our children's accomplishments.

With her permission, I have taken excerpts from her message to me (her word in italics).

...But I wonder.... Is all of the therapy really helping make Grace the best she can be? If it is, than you should continue to pursue it aggressively, as you are. But in my own situation, I feel like therapy is overrated. I have felt in the past like maybe I am not doing enough, but at the end of the day I just decided that my goal will be to help
my child have as fulfilling and happy a life as she can...and I just don't think all the therapy really enriches her life that much.

We do therapy twice a week. Once it's traditional PT at home with a private therapist, and once it's hippotherapy. Both are paid for through our health insurance. We have never paid out of pocket for any therapies. To be completely honest, part of that is because I am a skeptic by nature, and I really wonder how much any of those therapies work in the long run. I do believe that a lot of them make noticeable difference in the short term, but when
my child is an adult will they really have done any good? I don't want to spend all of her college money pursuing therapies that are not going to help her when she is an adult.

I also don't want therapy to cut into
my child's time to just be a normal kid. I looked into other therapies, but both would require such a huge time commitment, in addition to the money, that I didn't feel it would be fair to my child or the rest of my family, especially not knowing what the outcome would be. The bottom line is that my child (and Grace) will always haveCerebral Palsy. It's not going away, and all the therapy in the world will not make her "normal" to the rest of the world.

I'm sure that I will always have some level of doubt over whether I did enough...but I think at the end of the day I know I AM doing enough. We try to incorporate therapy into our lives in an unobtrusive way, and balance it with trying to include
my child in every activity that we do in the best and easiest way that we can.

Anyway, I really hope that you will not be offended or feel like I am trying to tell you in any way what YOU should be doing. But I do want you to know that you have already done SO MUCH for your children and it's okay if you take a step back and take a break from all the therapy. I have used the money that we are NOT spending on therapy to take
fun family vacations, for dance class, and swimming, and saving for college and any equipment that might enhance our lives along the way. It's okay to do that. It's okay to spend your money on having fun as a family. And it might even have more of an impact on Grace's life in the long run.

The email continues with encouragement and support and ends with the following...

And it's okay if you need to take a step back and regroup. Take a break from ALL therapy if you want! It really will be OK!

As long as Grace has a
loving family who treat her with kindness and respect, she will be okay. And she clearly has that:)

Thank you dear friend for taking the time to send this to me. I so value your perspective and appreciate the thoughts. It has permitted me to take the time and regroup and just enjoy my child as she is. I love you and hope I will one day get the opportunity to meet you.

Monday, October 5, 2009

The Lemonade Award

[lemonadestandaward.jpg]
I've won an award! I was given this award by one of my heros...Melanie over at Better Than Normal. I am truly humbled. You like my blog...you really like my blog :)

Mel is an amazing mother and blogger. She also creates awesome crowns and capes, that can be found at Etsy, to raise money for her son's therapies and treatments. I love reading Mel's blog because she so often writes about the same frustrations and anxieties that I encounter being the mother of a child with special needs...only in a much better way. She has a wonderful charming son Daniel that you will fall in love with.


The Lemonade Award is supposed to honor those people who show great attitude or gratitude, and I assume the origins of the title are from the old saying 'When life gives you lemons, make lemonade.'


So now for the rules of the award, I must follow....(and so must you if you get the award!)

- Put the Lemonade logo on your blog or within your post.
- Nominate at least 10 blogs with great attitude or gratitude.
- Link the nominees within your post.
- Let the nominees know they have received this award by commenting on their blog.
- Share the love and link to the person from whom you received this award.

So without any further ado, my nominations are:

3. Stacey at Housewife in Flip-Flops
4. Angela at Busy Lizzy
5. Nelba at Chocolachilli
6. Kristina at How Life Happens
7. Patricia at My New Normal
8. Erin at Smallest Smykay
9. Cara at Adding On
10. Jocalyn at Kendall's Hope

Ok go ahead........take a few minutes and read about these incredible parents and their children!

Friday, October 2, 2009

Happiness in a Box (with a Sharpener!)

Do you remember your first box of 64 crayons with the cool sharpener built right in? I remember...it seemed like forever that I was stuck with the box of 48 crayons. My mother just did not see the need for 64. She just didn't understand why I needed such beautiful colors as "cornflower", "atomic tangerine", "tickle-me pink", "salmon" and "spring green" and how they were required for me to complete my third grade education. I don't remember how huge the tantrumt I had to throw was, but I remember gazing loving across all 64 beautiful colors after my mother finally gave in...too afraid to ruin the perfect point of the silver or gold crayons, or heaven forbid, have to tear the wrapper because the crayon was worn too far down.

Today Kat Kat arrived at our home with the best surprise ever!!!! She noticed my kids were lacking in the crayon department, as their collection consists of broken pieces, miscellaneous stubs, and a few Princess head crayons. I guess I should say it consisted of these, because Kat Kat brought the ultimate Crayola collection. 150 different colors. A three-tiered holding caddy that locks in place to ensure easy access to each unique color. It is complete with a Super Sharpener- one that ingeniously collects the shavings in a built in compartment for easy disposal. This is the Red Rider BB Gun of Crayons.... on speed.



I was...I mean the girls were SO excited. I'm so happy that they appreciate the happiness that comes with "raw umber", "thistle", "mulberry", "blizzard blue" and a built-in sharpener.

Wednesday, September 30, 2009

MJ for Halloween

We have been trying to decide what to dress as for Halloween. Grace has the perfect idea. She already knows 3 of his songs.
video

Sunday, September 27, 2009

Our First Soccer Game

Saturday was the first soccer game for the Little Kicks. There had only been one practice due to all the rain we'd had, so I was expecting chaos. I wasn't able to go because Grace had physical therapy at the same time, so Abe and Kat took Mack and Sophie. They looked so cute in their soccer clothes...I almost cried.

Sophie loved it but it took Mack awhile to warm up to the whole thing. He eventually wanted to play and said he have fun, so we are looking forward to next week. Yea Soccer!!! (as Sophie says)








Monday, September 21, 2009

Look What Grandpa Made!

Thanks to Grandpa Lieck, Grace now has her own set of parallel bars! For about $30 of PVC pipe, this cool set of bars was made by Grace's very creative and handy grandfather. We love them and they work perfectly. She is able to practice her forward stride and cruising at home with these. Plus they are light enough for me to stand on end and put in the corner when not using. They are perfect!!



Monday, September 14, 2009

May I Have a P Please

Today was Grace's first day of pre-school. She is attending with Mack and Sophie and has an aide to help her get around the classroom. I got there early to make sure everyone (kids, teacher, aide) were comfortable with the set-up, and I had a few minutes to talk with the teacher about Mack and Sophie and how their first week (last week) went.

Teacher: "We have been working on writing our names and Sophie does well, however I have a funny story...I hope you're not offended."

Oh no, I'm thinking, what has my daughter done?!

Teacher: "I was watching Sophie write her name and there was an S and an O and then an H. So, I asked her...Sophie, that is really good, but where is the P?"

Sophie: "Right there!" As she points down to her bottom.

Oh Sophie, you are such a logical, deep-thinking child. I love you!

Friday, September 11, 2009

Brainteaser

Question: What is missing in this photo?

Answer: A hat, a visor, or any type of head covering. After 5 months, Mack no longer insists/demands to wear an animal themed hat. It really didn't bother me but his dad was really getting tired of the whole thing.

Wednesday, September 9, 2009

Zoo Outing

Last week we spent a morning at the zoo with Marcy and Matthew. Grace was at physical therapy so it was just me, Mack and Sophie. I always feel guilty about these outings without Grace but we had a great time. I keep reminding myself that Grace gets to do plenty of stuff and she needs to be in pt right now. It also help that my friends keep reminding me of this also.

Mack and Soph looking at the "mingos" (flamingos)
Cool parrot and cool kids.
Love the penguins!


Tuesday, September 8, 2009

Girls' Night - Manis, Pedis and The Sound of Music

Saturday night the Horns were playing so Abe and Mack went to a friend's house to watch football. Kathryn, Grace, Sophie and I has a girls' night. While we watched The Sound of Music (and of course, sang along...and sounded dang good), Kathryn gave Grace and Sopie manicures and pedicures. At their request, request four different nail polish colors were used. Each hand and foot and a different color...brown, blue, red and pink.

Grace and Sophie then wanted to give Kat a pedicure. God bless her...she let them. One foot was almost entirely blue when they were finished and she left it that way...well, at least until today because she didn't want to hurt their feelings. Kat, you are one in a million!!