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.

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:

1. Aimee at We Could Not Ask For More
2. Tara at Too Much Information

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!

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.

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.

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)

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!!

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!

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.

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!

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!!

Intensive Physical Therapy

Tomorrow begins our last week of Grace's first session of Intensive/Therasuit Therapy. This session lasts for three weeks, three hours a day. There is a long waiting list for this physical therapy in Dallas at Beginning Steps and we were so fortunate that some cancellations occurred and we were able to slip into a slot. We were previously looking at next October for our first session. You can read more about Therasuit Therapy here.

Grace has been great...for the most part. She has been doing better than I would probably do if I had to "work out" for three hours straight every day. There have been a few tears but not because of the work. She is still fearful...fearful of falling. She doesn't have enough confidence in her abilities. We are slowing working through this.

Grace is using weights to strengthen her muscles. The weights or repetitions are increased everyday. She is becoming so strong!
Here Grace is wearing the Therasuit and being held my 4 bungees. This helps teach her to stand "properly".
In this photo only 2 bungees are being used. Yipee!! She is getting so much better at standing. She is not wearing the Therasuit here. I like that her time in it is being limited.
Look at her standing with very little assistance!!

Trying Out A Wheelchair

We have been putting off purchasing a wheelchair currently for a few different reasons. Our PT and Conductors think we should wait because we don't want Grace to get too used to getting around in a wheelchair. They/we want her to continue to work towards walking. In addition, wheelchairs are very expensive and insurance and Medicaid will only cover one type of chair over a several year period (I believe in excess of 5 years) so we really must know what kind we want when we get it, unless we want to pay for it out-of-pocket.

For now we have acquired a loaner. We don't use it a whole lot, but Mack and Sophie like to push Grace and she is really starting to figure out how to get around in it by herself. I know that it is likely we will have one of our own one day but for now we are thankful to have this one to try out. Thank you so much Julie for thinking of us!

Are You Okay Mommy?

I've spent much of this week on the phone with our insurance providers and other agencies looking for a way to get some of Grace's therapies paid for. Can you believe that our insurance does NOT cover out-of-network physical therapy, even when the type she will be doing is not offered within a 200 miles radius!!!!!?? I'm pretty stressed about the whole situation. We have spent thousands and exhausted our savings to get Grace the help she needs to be the best she can be. I have felt at peace that we will go without vacations, and Mack and Sophie aren't able to do outside activities but where will the hemorrhaging of monies end. How much more can we take? I know that we are not destitute and for that I am so thankful but what happens if/when there is no money left. Will Grace have to go without certain therapies? That is NOT AN OPTION. Will I fail her?

Today as I was going over all this on the phone, etc, Sophie came up to me and said "Mommy, are you okay?" I was taken aback. Was she watching...listening...or did she just sense that I was not at my best. I was at the point that I honestly though I might vomit.

"I'm just a little tired today Soph. Everything's okay." I replied.

As she began to rub my arm, she leaned in and whispered "I love you mommy." That's when the tears began.

My Babies Are Growing Up!!

On August 9, my 28 week premature babies turned 4 years old. I can't believe that my 2 lb 11 oz boy and each 1 lb 13 oz girl are almost too big for me to carry...are counting and picking out letters...are choosing their own clothes. How can it be that we are so blessed?

Here they are three years ago in their 1st birthday hats.

PSALM 139

O LORD, you have searched me

and you know me.

You know when I sit and when I rise;

you perceive my thoughts from afar.

You discern my going out and my lying down;

you are familiar with all my ways.

Before a word is on my tongue

you know it completely, O LORD.

You hem me in—behind and before;

you have laid your hand upon me.

Such knowledge is too wonderful for me,

too lofty for me to attain.

Where can I go from your Spirit?

Where can I flee from your presence?

If I go up to the heavens, you are there;

if I make my bed in the depths, you are there.

If I rise on the wings of the dawn,

if I settle on the far side of the sea,

even there your hand will guide me,

your right hand will hold me fast.

If I say, “Surely the darkness will hide me

and the light become night around me,”

even the darkness will not be dark to you;

the night will shine like the day,

for darkness is as light to you.

For you created my inmost being;

you knit me together in my mother’s womb.

I praise you because I am fearfully and wonderfully made;

your works are wonderful,

I know that full well.

My frame was not hidden from you

when I was made in the secret place.

When I was woven together in the depths of the earth,

your eyes saw my unformed body.

All the days ordained for me

were written in your book

before one of them came to be.

How precious to me are your thoughts, O God!

How vast is the sum of them!

Were I to count them,

they would outnumber the grains of sand.

When I awake,

I am still with you.

If only you would slay the wicked, O God!

Away from me, you bloodthirsty men!

They speak of you with evil intent;

your adversaries misuse your name.

Do I not hate those who hate you, O LORD,

and abhor those who rise up against you?

I have nothing but hatred for them;

I count them my enemies.

Search me, O God, and know my heart;

test me and know my anxious thoughts.

See if there is any offensive way in me,

and lead me in the way everlasting.

Another New Therapy

I'm so excited!!! Grace is starting an intensive therapy with Beginning Steps Therapy on August 24. This therapy will be for three hours everyday for three weeks. There is a long waiting list to get into this therapy and because three other children were not able to attend, we worked our way up the list and got in. I feel guilty for being so happy that they could not attend but also so lucky that we don't have to wait a year (as originally planned). The physical therapist, that Grace will be working with, is wonderful and is a big fan of the PERCS procedure and familiar with the work that has to be done on those muscles that had previously not been used due to the spasticity that was released during PERCS. I'm not sure that all makes sense but work with me...I'm tired. Please pray that Grace gets all she can out this and that she eats enough to replace all the calories she will be expending. She will basically be working out three hours a day. If only I could do that :)