Saturday, January 26, 2008

What P's Life Has Already Taught Me

Lindsey asked yesterday in the comments about P's mild Cerebral Palsy diagnosis and what that has meant in our family. Thursday, I had a conversation with another mother of multiples about raising a child with developmental delays who has same-aged siblings and the inevitable comparisons made between the two. We are in a really great place with P's development right now, but I wanted to document a little about our journey and what I've learned. Perhaps it will help someone. If not, at least I have it recorded for posterity, as I have certainly learned that I have trouble remembering much about where we've been unless I write it down.

This post is about P's early signs, diagnosis and milestones. Cerebral Palsy has a broad spectrum, P is on the very mild end. He has spent 3 years receiving Physical Therapy, Occupational Therapy and Speech Therapy as needed. Sometimes that has meant 4 hours of therapy weekly, other times it has been as little as 30 minutes a week. We work with a great group that evaluates him a couple of times a year to see how he is progressing towards major milestones. Currently, he is receiving physical therapy every other week, as his slight gait issues (primarily when running) are the only noticeable deficits. Ironically, after all his therapy, his fine motor skills are much better than those of his brother.

As I was talking to a friend who is standing at the edge facing the possibility of developmental delays in one of her multiples, I was reminded of all the uncertainty. Will he always be "the one with the issues?" Will he have self esteem issues as a result? Will his own siblings treat him differently? Will he be left behind? What if he has to go to a different school? Will his weaknesses restrict the type of hobbies and/or career he pursues? Can he play sports? The list of questions were endless.

As mothers we want to protect our children. It is a powerful, innate, driving force. I feared what this world might do to a "weak one." Haven't we all been there as we have stared at our children? Fearing what this harsh world may think of one we love so completely?

I have learned many things in this journey. The two greatest things are these: First, each child is absolutely, uniquely designed with a plan and a purpose. It is not a tragedy that any child is born with anything. (That is a bold statement, I know. But, I stand behind it.) I believe in a Sovereign God who knits us together in our mother's wombs, who has a plan and a purpose for each of us to uniquely fulfill. Even profound disabilities can be used by God to make a huge impression on the lives of others. Just look at Rick Hoyt.

Secondly, part of our unique design is the flaws, weaknesses, handicaps, thorns in the flesh. Every single human being has them. P's first physical therapist addressed my early tears and fears with the reminder that K & R were going to have difficulties of their own, whether they be physical, mental, emotional, academic, social, spiritual--or a combination thereof. The way our children deal with these challenges and the impact they have on their life are all a part of the sanctification process.

As a professing Christ Follower, my purpose on this Earth is to glorify God. Period. Everything in my life is about fulfilling that purpose. Loving others. Serving. Parenting. Working. Evangelizing. Everything. I wish I could always remember that. The truth is much of my life is a poor reflection of the fact that I hold his glory most dear. Yet, that is how success is measured in the worldview I profess. Not how well-spoken, well-read, well-educated, well-mannered, wealthy, or well-liked, not by how beautiful, popular, athletic, coordinated or admired I am. What matters is this: Is my life pointing others towards Christ?

As a parent, this is the purpose I pass on to my children: Live the life God gave you with greatness so that God receives the glory. Do I desire for my children to be well-educated, attractive, well-mannered? Yes, of course. But only if it is a way to love and serve others more effectively in the name of our Lord.

It is so easy to get sucked into mainstream voices of what success looks like. I often find myself mixed up. Nudge me, push me, Lord, keep reminding me. Please, Father, keep me focused.

19 comments:

Kelly @ Love Well said...

Beautiful. What a great reminder of our ultimate purpose in raising kids, no matter what difficulties they (or we) face.

Love it. Your writing always encourages me.

Reformed Grits said...

Thank you for this, and for what you boldly said about birth defects. We lost a child at 17 weeks gest and my OB said that had he been born term and alive, he would have had many severe and profound handicaps. (I'm sure I didn't use the most politically correct language here.) He was to be our 6th child, and our other children grieved his loss deeply as they were old enough to understand. They talk about our John Knox daily and ask what it would have been like to have a brother that was "special." One of my more "imaginative" children gets scared thinking of it. I tell them all the time what a blessing and great joy John Knox would have been, no matter how he was born because he would have been nothing more or less than their brother. But then we can go further than that to talk about how even in his short life, only in the womb, he accomplished every purpose God had for him on this earth. It's hard to understand for them, but I think it's made them more compassionate-- at least I hope and pray so.
Thanks again for your post and for letting me ramble... I'm a long-time lurker on bloglines and enjoy your blog lots. :-)
Blessings-- Kim (www.reformedgrits.typepad.com)

GraceandFaith said...

Your blog is part of your ministry and it blesses all that read it. During prayer today I was asking God for strength to do what I have to do for my son who is gifted and has sensory processing dysfunction. For a long time I would ask "Why my baby?" The more I prayed, the more it became clear that God had this as his plan and has already given me the gifts to help my son live his plan. Thank your for your testimony.
Peace,

Mom of Eleven said...

Thank you for that!!!
Wendy

Hannah E. said...

Ever since I discovered your blog through a link on a friend's blog, I love to check in on it, though I rarely comment. But I wanted to this time...This post encourages me greatly. Just earlier today I spent time with a friend's sibling who has a genetic disorder that has caused some handicaps as well. I'm pregnant with my second child, so after spending time with this precious girl this afternoon, my mind began to wander about the possibilities for my own daughter I will be meeting in a few months. Will she be healthy?, have problems?, etc. Reading this post was very timely encouragement for me! God was using it to remind me of TRUTH just in time...before the fears really started creeping in. I know it is true that every child, even with handicaps and developmental delays, is beautifully and perfectly designed by God and that my goal in parenting isn't to prevent all kinds of suffering in my child's life but to hopefully partner with the Lord in shepherding their hearts to love Him in such a way that His glory shines through their suffering and weakness. He doesn't make mistakes! What a great comfort really.

Keri said...

What a beautiful post! Your children are so blessed to have a mother who is teaching them -- through words and actions -- the truths you've expressed here!

Tracy said...

I found your blog through a friends link as well and I "lurk" but have never left a comment. This is a topic that is close to my heart because my youngest was born ten weeks early and has faced many difficulties. He is now three and has made vast improvements but he still is not like the other children his age. Just in the past month I have faced a situation where I had to take him out of nursey at church because the workers feel he is to big to be in there but he is not ready to move to the next class develpementally. He does not fit anywhere right now. My heart hurts as I look ahead and wonder how many situations he may face in life where he just does not fit. However, I have built my entire spiritual life on the fact that I serve a God who IS trustworthy!I agree whole- heartedly with evrything you have said! Sometimes my emotions get in the way of my faith :) but I always come back to that simple fact. God is trustworthy. He knows Isaiah better than I ever could because He created him to be exactly who and what he is.

Ivey's Mom said...

Multiples or not, I think you know my opinion on this and what lessons are learned.
We learn to appreciate. We learn to accept. We learn to love. We learn to support. We learn to PRAY. We do all these things through our children...and siblings.

Lizz @ Yes, and So is My Heart said...

I'm a twin. Due to complications at the delivery, my sister had a seizure not long after our birth. This left her with epilepsy and thus far a lifetime of challenges. Your post has given me a glimpse into the world in which my mother lives.

Your little ones will be blessed having a mother who understands the true purpose of life.

I could go on, because obviously this is close to my heart. Instead, know that I'll pray that you have continued wisdom.

The Amazing Trips said...

You are awesome. And you want to know something?? You have been instrumental in pointing ME more towards Christ.

Rock on, JMom. ROCK ON!! :)

Dena said...

I can completely relate. I want to keep that perspective as well, and oh how I struggle when I let it slip out of sight.
Isn't the Hoyt's story just beautiful?
Thank you for sharing this post, it encouraged me to keep fighting to keep seek my joy in the right place.

ivegot5 said...

You've spoken the hearts of many mothers out here who face this every day. My little guy is 3 and has down syndrome. And he is exactly who he is supposed to be. God doesn't make mistakes. And that truth and knowlege and faith carries moms like us through so many hard places. Even with that faith, it's not easy to know that your child will have a tougher time than most. Thanks for reminding us where to look for strength.

Erin said...

Beautiful. Thanks so much for sharing. Now I have to go fix my make-up before I leave for church!!!

Holly said...

I found your blog and love reading it because it's so different from my life. Amyway, I just wanted to share that I'm 30 years old and also have mild CP. I've lived two countries other than the U.S. by myself and pretty much the only things that I can't do are cycle and hold a plate and eat off it at the same time. My parents always helped me to see that the Lord had a purpose for me.
Thanks for the update!

JenB said...

Amen! Thank you for this entry, sweet sister.

Unknown said...

As many others have commented, I have been reading your blog for a couple of months now and have never commented before. That is until I read this post.
My son has mild CP. When he was born he had to spend some time in the NICU and pretty much failed every "test" he was given. When we brought him home they couldn't promise us he would ever walk or talk. They just didn't know the severity of his problems. We spent many hours/months in PT and OT.
As is turns out, only through the grace of God, is he totally fine. He is five years old now and is mainstreamed into a 5 year old transition class and will start kindegarten next year. He struggles with his fine motor skills a little, such as cutting, wiriting, tying shoes.
Reading your post brought back so many emotions for me. All the worry and heartache.

I will tell you this, I wouldn't trade it for the world. God taught me SO many things through my sweet little guy. Kids with special needs are put on this earth to do BIGGER things than just being normal kids. God has great plans for P and for my Jack. It is exciting to me now to see what he has in store.
God gives each of these babies a special gift. Keep watching and I know you will see something in P that he is gifted in. My son can throw a football better than most high school kids (not just our observation, but anyone who sees him throw)....OK, I know I'm bragging, and yes, I know he is only 5....but it is truly a gift God has given him and our entire family to enjoy. We have so much fun watching him and we are so HUMBLED by this. We would probably not give credit where credit is due had we not learned that Jack is HIs baby, and that only because of Him is Jack even here on this earth for us to enjoy. What a pleasure it is. Whatever that special talent/gift God has given P....you will notice it and enjoy it so much. More than you would had God not sent you on this special journey with him.
I have rambled, but I hope this gets you excited to watch P's special purpose on this earth. It is much more important than just being able to do simple things and blending in with the normal kids.
Beth Dawson

Trudy said...

Beautiful post. This is why you were God's choice for P. I've always thought his answers and stories were so cute. You can see he is a very intelligent little boy. What a blessing!

beckylbranch said...

This post touched my heart. The Lord is so good! I am a 26 year old twin. I have mild cerebral palsey. It has been quite a journey thus far, especially because everyone always compared me to my sister. That is the way they told us apart. I am so thankful that my life is the way it is and I wouldn't be who I am today without this disability and I see the world in a humble way now. God knows what he is doing and he's always in control! I'll be praying for your little ones! I know God still works miracles! Becky :)

Lindsay said...

Thank you so much for this. Your words are very comforting to me as we start this roller coaster ride of therapies upon therapies with my daughter.