Coming Up for Air

"It's been a really long time coming
You think I would've known
When you lay down on waves of worry
You wake with vertigo
Out of breath and short on everything it
takes to go ......

I'm coming up for air
I'm gonna do a really slow repair
Gonna take some time to taste the tide of
What it means to be alive
I'm coming up for air
I'm moving out, I'm driving on till I can stare
At a winter sun setting on the beach
And wide open space in front of me ....

(Margaret Becker)

It's been a really loooooong time since I've been on here ......... I love this song by Maggie B. I wish I knew how to play it on here somehow, but you know me - still techNO. It is true, I have felt short on EVERYTHING it takes to go for a while now. I've felt as if life happenings have been pulling me under - I have looked at my life and the way I feel doesn't always match up with what is going on around me - Ryan is now 18 months off treatment and cancer free and we have been blessed with the sweetest little guy ever - life should be great, shouldn't it ? I keep telling myself that, but I think what really is going on is that what my head already knew is finally catching up with my heart ......... our lives have been changed forever ......... we don't ever get to go back to "BC" (before cancer). That is hard and it hurts. So much of life after cancer I absolutely hate - yes, so much good - so many beautiful things have taken place and continue to do so, but there are lots of this I could do without ...... like taking Ryan to pick out his birthday cake - standing in Baskin Robbins as he flips through the cake book - I memorize every moment of this - the way his hair is sticking up in the back, the way his little fingers look as he points at every cake and flips the pages, trying to decide on the perfect one (picking out your birthday cake is serious business after all). The part I hate is that I stand there thanking God that we are here, we are here picking out this cake for his 7th birthday.... thank yous that are then followed with begging and pleading for at least 80 more of them to follow. This goes on into thoughts of those sweet mommas and children who don't get this gift of picking out a birthday cake anymore - I see some of their faces flash in my mind and my heart hurts. I completely "get it" that this is truly a miracle and such a gift that I have been granted ........ I wish that everytime I see Ryan holding his baby brother or hear him telling him all the things he will teach him when he gets bigger that part of my heart didn't hurt quite so much as I groan/cry out to Him - "Oh - please allow it - please let it be - I want Andrew to know this most incredible brother he has" .....
just a few of the moments I long to be "just a normal mom". Don't get me wrong - we still laugh and have lots of fun, but the elephant is always in the room. I am more than thankful that Ryan is here with us, but being on the other side isn't easy - it's hard to see the struggles that he has and I want to make it all okay for him.

But, I do sense the seasons are changing and feel Him working on that "really slow repair" ....... for that I am truly grateful (and I really wish the beach was somehow part of that plan :)). I love Jeremiah 29:11 - " For I know the plans I have for you, declares the Lord. Plans to prosper you and not harm you, plans to give you hope and a good future." Sometimes when I look at our life - I have to have some heart to hearts with Him because things just aren't looking like this scripture says it will - I don't always feel as if we are prospering or have hope. I know I have to fix my eyes on what is unseen ................ mostly, I just love this amazing boy so much and I want life to be the very best it can be for him - I want him to be and do all that he dreams of, I want a very long life for him - one where he can smile, and where he doesn'thave to explain to other people that the reason something is hard for him is because he had a brain tumor. It's hard coming to place where you have to accept it is what it is ..... not saying that God won't or can't intervene - I believe that with everything in me and I continue to wait with an expectant heart to see how He is going to move in Ryan's life.

Lots of you have asked how Ryan is doing so I thought I'd catch you up - overall, Ryan is doing really well. He had a great year in 1st grade and is moving on to 2nd next year. He continues to have right sided weakness - this is hard for him because he wants to run, jump, hop on one foot - all the things any other little boy does. It has been hard for him as he realizes how much slower he is than the other kids and we have to work through all of that from time to time. He still gets physical therapy and works pretty hard to get stronger. I can see how much stronger he is - but he still wants to be the fastest :). The facial palsy continues (the pain of missing his sweet smile never gets any easier) - this also means he can't blink or close his eyes completely which takes a toll on the surface of you eye after a while. We put moisture drops in during the day and "goup" (lacrilube) in at night. Ryan often asks if he will have to do this forever - that is hard because most likely he will unless God chooses to heal the facial palsy (we never stop praying for that). It also makes Ryan pretty gunshy around water or kids throwing stuff - even the wind blowing can drive him crazy, he is really sensitive to light and can't squint so sunglasses are a must - just imagine something coming at your eye and you can't respond by blinking or closing your eye. Just another reminder of how much we take for granted - our bodies truly are amazing! He continues to get speech therapy since he can't completely close his mouth - I think his speech has really improved and he no longer has to hold his lips together to make some of the sounds or drink from a straw. He has double vision which brings about a challenge in school - reading, writing - pretty much with everything but he compensates amazingly. His last visit to the eye dr actually did show improvement in his vision in the right eye - just keep praying that will continue to get better - I would love for the double vision to be gone because I think that would change so many things for him. Ryan's last hearing check did show that he had some hearing loss - the chemo he had can cause hearing loss up to 5 years off treatment - many of the kids who have this chemo need hearing aides. Ryan's body also is making very little growth hormone - another side effect of chemo and radiation - if this doesn't turn around he will need growth hormones (a daily injection). I realize that in the big scheme of life, some of this seems to be small stuff - but my prayer is that he will be spared many of these side effects - I love this little guy - I am jealous for him - I don't want him to have to deal with anymore than he already has to deal with. Ryan has MRI's every 3 months and what we want is no evidence of any cancer in that little body. On a happy note - Ryan did turn SEVEN and had a really good birthday - he recently told me he was thankful that God was going to let him live to be a 100 - I'll take that :). Ryan played soccer and seemed to have fun and he is doing really well with swimming lessons. He loves to play the Wii - it can be pretty addicting. He loves his baby brother when he's in the mood and it seems he's always in the mood for pestering the fire out of Addie. His never give up attitude always inspires me - what I would give to have half of the determination he has. He's shifted into becoming a Daddy's boy - but he still wants Mommy to tuck him in at night

Not to leave out our sweet Addie Rose - she is doing great and will be a 4th grader next year - she had a wonderful year in 3rd grade and is really growing up. She is a great reader, great swimmer and is an amazing big sister. She helps with Andrew lots (with a good bit of supervision :)) and she makes him laugh like nobody else can - it is hilarious.
She is extremely glad it is summer and all she wants to do is swim, swim, swim. She is all girl and her newest fave is to have a pedicure - she always wants them to paint crosses on her toenails - of course the folks who work there don't understand a whole lot of English and then trying to understand Addie is a whole 'nother story - she finally draws a cross for them and says "you know - Jesus - died on the cross!!!" - she says this in a very frustrated tone. Who knew that we'd be winning souls for Jesus by getting pedicures.

And we can't forget the wee one - Andrew - he is absolutely wonderful. He is 7 months old and this time is going way fast for me. He adds lots of joy to our lives. There is nothing better than snuggling with this sweet little guy. He has about 4 or 5 teeth all coming at once which has been a little rough for him.

As for Rob - he stays busy at work, then comes home and stays busy at home. It is amazing how much busier life seems when you add number 3.

I think that's about it - thanks for sticking with me if you're still reading by this point. It was a long one. I don't think I'd be a blogger if it weren't for Ryan and as of late some things have just been to hard to write about. Hopefully I won't stay gone for so long - but no promises :) - I am hopeful that I'll be back next week for sure to share the good news of Ryan's clear MRI. I have lots of pictures, too many to download, but hopefully with summer here I can get some on here to show my little sweet peas.

This journey continues and we covet your prayers - we will be forever grateful for the love and support that you continue to give. Ryan's next MRI is June 1st - please pray that all will go smoothly (IV, sedation) and most importantly that he is cancer free!

Love to you all!!

I wanted to add a prayer request for another amazing boy - Ethan Bibb's. Ethan is 8 y.o. and has the same tumor Ryan had - his is very different in that it had spread to his spine. Ethan will be finishing up his radiation treatments next week. Today they found out he has a bacterial infection and had to go back into the hospital - this is hard no matter what, but Ethan had a really big day coming tomorrow - his home town was having an Ethan Bibb day to celebrate Ethan and to help this precious family out with medical and every day life expenses - his entire family has been looking forward to this day and now most likely Ethan will have to stay in the hospital to get the treatment he needs. Please pray that the antibiotics will respond immediately and take care of this infection - pray that his mom and dad feel completely "held". You can follow Ethan at - www.caringbridge.org/visit/bibb
Prayers mean EVERYTHING when you are in this place ........