Wednesday, June 16, 2010

 Sometimes it's hard. Sometimes it's lonely.

So here's the deal. I have this boy who is such a miracle. He was born at 25 weeks. As most of you know - a normal pregnancy is 40 weeks long. For real - that is 15 whole weeks premature.

So we've established this many times on the blog. He is one of the biggest miracles I have had the privilege of experiencing and being a part of.

But right now... my miracle boy is hard. He's 7 and he's attitude and he's smart yet so very different from other boys his age and I am at a loss when it comes to so much that pertains to him right now. And some times he thinks the world revolves around him... and since it pretty much did for a while I can't really blame him too much.

My love for him is big. It's really big. And you already know that. My frustration and puzzlement over what is best for him and how to deal with situations and circumstances that I never mentally practiced for is also big right now.

I always try to include him in things the other boys do. And lately it's just been hard. He asks to do things that they want to do - fishing, playing at the playground, playing ball outside, etc. And then once he's out there doing those things he complains. He wants to go in. He sees it - the fact that he can't run. He can't catch the ball quickly and effortlessly like the other boys. Oh - it hurts my heart. He is so much a part of me and I feel it. I have always tried to celebrate what he CAN do. Focus on the positive. Never say the words to him "you can't".

Let me just say - right now I am weary. And as he gets bigger there are honestly things he just can't do. So I see a moment of disappointment flash through those hazel eyes and then I see him just go into this internal world where there are little Einsteins and Veggie Tales... and happy places that he sees clearly in his mind even as his eyes struggle to function.

I think in that world he runs really fast. I think he uses the bathroom just like his 3 year old and 5 year old brothers do and I think the right and left sides of his body are both functioning fully there.

Tears fall from this mama's eyes as she writes, because these were scenarios I never imagined grappling with when I dreamt of motherhood. I want so much what is best for him. And how hard it is for me to suddenly say "I don't know what that is. I don't know what that looks like right now".

And do I dare open this up? The side of me that is saying "it's hard!" - Rather than the side that says "it's beautiful and miraculous!"

I want him to learn responsibility. I am giving his brothers jobs to do and they are thriving. But you guys, he can't dress himself, he can only see arms length and what he can see is not clear at all {this is our present understanding of his vision any way. He is actually labeled "legally blind"}, his right side is so weak - and we can do things to help strengthen it some, but it will always be very difficult for him to use the right side of his body. What happened to him when he was 3 days old has many different scientific and medical terms - but it was basically a stroke.

It used to be no big deal for me to hoist him onto a slide or carry him over an area that was too hard to maneuver a walker over. He's alot bigger now. I'm not exactly a strong mama. Honestly, I am only double his body weight + about 12 pounds {- Always been a bit of a weakling}. And I hate that I can't help him as much as I used to. I can't even tell you how badly I feel about it. My chiropractor would tell you though that I have got to make smart choices regarding what I do with him. He has rolled his eyes at me a time or two when I have answered his questions about how my body got so out of alignment.

Too often K just gets to do what he wants. Watch his movies, play his computer games (with his left hand), and not be a part of what everyone else is expected to do. I don't want that - and yet when I try to include him my plans rarely work at all.

I am asking God for wisdom, creativity in doing this, and just so much grace.

Lately I have noticed this little feeling creeping in to my heart. Loneliness, and a little bit of isolation. I am not going to let these feelings be my master. But I have to be honest and say that I am struggling with them right now. The play dates, all of the summer activities... with two who aren't walking (K walks, but still with his walker and needing assistance in many places) and all of the things that K struggles to do on his own it isn't very practical for me. The times that I have gone out and tried to do things with all of the boys have often become very stressful. I don't want to go out and do something if I am not going to be able to safely and confidently handle the entire scope of it.

Oh and in my heart... deep down in that place of knowing: I know that I am doing exactly what I am called to do. Exactly. I don't know the details of each day in and day out parenting decision as I trudge the waters of having a child with special needs (I always hesitate to use that phrase - because I see each one of my children as having "special needs" - but I use it with K because it is universally understood). But I know that God picked me. And I know that he gave me the grace to do it. And I know that God picked K. And I know that God gave K the grace to be patient with a mama who is learning, and struggling, and sometimes is weary

*Persevere, persevere, persevere*

And as I persevere I drive to the speech therapy play group where an occupational and speech therapist works with him and a few other kids with similar issues as him.

I schedule surgery number 9. Nine surgeries for a 7 year old makes me feel sad - but boy do I know there are many worse off by far! This is simply a surgery to stitch his digestive tract and stomach where his feeding tube site never closed on it's own as it was supposed to.

I bring him to occupational and physical therapy as we continue on in this deep desire to strengthen all that we can on this boy whom we love so deeply.

And I pray. Doing alot of that over him lately.


Rachel @ Unexpected Blessings said...

Not sure what to say exactly. I love you. You are an amazing mom.

Anthony and Ashleys Mommy said...

Wendi - I'm tearing up over here reading this. I empathize with you. While Anthony doesn't have CP he really can't talk, at all. And I'm seeing his cousins and friends around him talking in sentences and leaving him. He's being alienated because of his verbal appraxia and it hurts my heart so much. He's such a social little guy. Wants to play and be just like the other kids. He's got low tone, so he moves different, he still can't jump, but while the physical doesn't bother me so much, its the lack of speech that tears at my heart. I fear the unknown. There are people with verbal apraxia that never talk. Will Anthony be like that? I don't know. I hate the not knowing. I hate feeling like there is something more i should be doing for him. Some magic treatment that I'm not finding for him. Even though I research every day!

Again, I know you have a lot more challenges then I have and I think you are the perfect mother for K! Its okay to have days where it all overwhelms you. There are days I get so down.

If you ever want to just vent or chat feel free to IM me.


Katarina said...

Praying for you! God has given you enough grace for each and EVERY day. He knows what you are struggling with and fearing and He WILL sustain you.
*hugs*. Hard days, days where you question and worry and wonder are all part of the course (whether we are a parent of a special needs child or not). As long as we cling to God and trust Him, our questions and fears and desires are never too big for Him.
Praying that you will find abunadant joy this summer as you rest in knowing that He is good.

BaronessBlack said...

Thank you for a great post. I appreciate your honesty. I really believe this will work out for you in a way that none of you can yet see. My cousin who has learning difficulties couldn't play with his brothers and their friends, and everyone worried he was becoming isolated, but he became really interested in watching them play cricket. And, although he can't join in, over the years he's become their umpire and adjudicator. So he's managed to carve his own niche in their games. I'm sure K will find his own space in a way that you least expect.
Know that you're all in our thoughts and prayers through this difficult season!

Sarah@Life in the Parsonage said...

I wish I could give you a big hug right now. Thank you for sharing your heart so's a beautiful mama heart. Lifting you, and your gorgeous family before His throne...

Rachel said...

I'm not sure what to say either, but I think you are an amazing mom and the fact that you are struggling with all of this and wanting to do what is best just shows how deep your love for K is. I'll be praying.

Heather said...

Praying for you. Thank you for your honesty.

Dawna said...

Praying for you and loving you and sending you hugs. xoxoxo. You are amazing!

Trisha said...

Praying for you tonight. Praising God that he gives us everything that we need to live this life, and for His grace which covers us everyday. May you feel His peace and love tonight.

Anonymous said...

Oh Wendi, my heart is breaking for you. Praying for you and for K tonight and your beautiful aching heart. I can't imagine trying to balance everything you do with K. But you know what? God CHOSE you to be K's mom. Out of all the women He could have picked, He knew YOU would be the best and would be EXACTLY what K needed. K thrives as much as he does because of the love and work and time YOU have invested in him. It's not easy by any means, but Wendi you are the perfect woman for the job because YOU are who God gave K to. Please don't feel down or second guess yourself. You are in a difficult situation and you have done an AMAZING job with the circumstances of K's stroke (just using the term you used in the post). He is a beautiful, beautiful boy, and when I see your pics of him I see the joy radiating off his face. You have done/are doing/will do an incredible job with K. Praying for your heart, your strength, and your peace. Love you tons!!!

Barbie said...

I am praying for you. May God continue to give you wisdom, strength and grace, as well as to K. You are an amazing mom and yes, you were handpicked by God for K, and he for you. Don't feel bad about struggling. It's your mama's heart. You can't help it.

Leslie said...

no words.. just lots of prayers for you and K.. your amazing..

Amber said...

I don't have children I don't your pain specificly. But I do understand the confusion about how hard it can be to takecare of someone you love.

Praying for you,

~beautyandjoy~ said...

Oh Wendi. The pain and the eloquence you share with is so beautiful in and of itself. The heartbreak, love, compassion - all of who you are being in your beautiful boy's life - IS beautiful. Your words are such a gift. Thank you and sending love. xo

The Sneaky Mommy said...

Wendi~I can only think that God using this in your life to show His glory for how He is going to work through you in giving you strength, creativity, perseverance, patience, and true joy from clinging to your Savior. Praying for you and especially sweet little K! Praying God will lead and direct and encourage you!

Cindy said...

Wendi, You and I used to communicate regarding our boys but have lost touch through busyness, yet tonight I read and know your heart and I cry out to the Lord on your behalf. I've walked PT, OT, ST and now horse therapy. I've lived the hurt in my child's eyes as he has realized his deficits compared to other's. I've cried myself to sleep numerous times knowing that life will never be simple for my guy.
Tonight I am lifting you up and asking God for peace and His Wisdom for you. I so wish I were close enough to just spend time with K while you have regular play dates with the other's. I wish I could say the pain goes away and life becomes simple, but I can't.
My guy turns 25 next week and the pain lives on through him and in us.
The one thing I can say is that God know's your mama's heart and He see's your love. Someday, someday, some sweet day our boys will be whole and perfect in the presence of Jesus - I just can't wait for someday.
But in the meantime...I pray, sweet Jesus...minister your Peace to my sister!!!
Love you girl, Cindy

Katie@The Baby Factory said...

Oh Wendi, my heart is so heavy for you. The only thing going through my mind right now is the lyrics to the song, which I'm sure you know...
"for when I am tried, and purified...I shall come forth as gold." Praying for you, my friend.