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?

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

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.