Friday, September 7, 2012

A Mother's Struggle

I remember when I was told that Micah had scarring on his brain that was consistent with cerebral palsey (CP). At the time the more important issue was hydrocephalus(excess fluid on the brain). I remember telling S and we sat on the couch looking out the window at nothing. We had heard the term "cerebral palsey" and suspected that it was pretty bad. However, we didn't fully understand what it meant for our baby boy.

Night before 1st surgery
Wide eyed baby boy
The doctors at Primary Children's Medical Center (PCMC) said the scarred area on the brain usually affects the legs but they couldn't tell us what to expect. We called S's father (who teaches special needs kids) and asked him what CP was. We were still confused.  One of the NICU doctors at St. Marks Hospital (where they were born and where Little Miss still was) asked how Mr. M was and I explained about the CP.  He explained that CP is a broad term. He found out more about Mr. M's CP and helped me understand what to expect and that we would have to wait to see how he progressed to know what he could and couldn't do. He then gave me the best advice I have ever been given. He told me that if we treated Mr. M like there was something wrong with him or that he was different, then I would be doing him a great disservice. He would have to work hard to do simple things and it would be hard for us to make him do them. But, if he grew up knowing that he was not exempt from anything (be it hard or not) then he would do anything he ever wanted to do. WOW!!! I didn't realize at the time how hard(as a mother) that would be to do.

Zoo 2012

So, here we are. Over two and half years later and we're faced everyday with things that are hard for him. And we have to make him do them no matter how frustrated he is or how much he's crying. S is great at it! Me? I struggle! I know it's best to push him and make him learn, but it SO heart-breaking and I just want to do it for him. If I could take it away for him I would! Doing the hard things for him is as close as I can get to taking it away. I have to stop myself and try and picture the self-sufficient grown man that WILL do anything he wants to. Some people might think I'm a mean mom when I'm telling him he has to do it, or he has to figure it out. But I know I'm doing the right thing. He has to work hard!

The most difficult times for me so far are; he didn't say "mama" until he was 2 years old. He didn't sit up on his own until after he was one year old.  He never held his own bottle. He couldn't communicate to us what he wanted/needed. When he's playing by himself because he can't keep up with the other kids. When he had some bad falls out of his reverse walker and wouldn't get back in because he was too afraid. When I have to send him in every three to four months to have painful injections into his tightest muscles to help release some of the tone(tightness). When he fell out of the car, face first, into gravel while he was trying to climb into his car seat. The first time some kids made fun of him.  And the two hardest things I've had to do so far are 1. Hand over my beautiful, sleeping baby boy to a stranger who was going to remove the front of his skull, re-shape it and the put it back on, and 2. walk up to a hospital bed after said surgery, and not recognize the sleeping baby there but know that it's my son because he has the blanket I sent him into surgery with laid on top of him.
Playing by himself.
Battle wounds from falling out of the car onto gravel.

The happiest times for me so far are; when he said "mama". the first time he sat up by himself, when he started using sign language to communicate with us. the first time he swung on a "regular" swing. when I watch him playing when he doesn't know I'm watching. When he said "bye-bye" and waved for the first time. the first time he did the actions to a fun songs. the first time he folded his arms.  when he cuddles up in my arms. his first prayer. when he's running away from me down a handicap ramp in his walk and giggling hysterically. when he took his first independent steps. when his stood up on his own, when he wakes up EVERY morning with an ear to ear smile and makes me feel like the most important person he knows.

Fell asleep in swing
There are far more happy times than sad times. The sad times just stand out more because I want so much for him. I might not have noticed all the things Mr. M didn't do if he didn't have Little Miss as his twin sister. I wouldn't have it any other way though. She challenges him and motivates him. She encourages, watches over, and treats him like he's any other person. For example, one evening after dinner Little Miss was running around the kitchen like a crazy person. Micah was sitting in the middle of the floor just laughing and giggling when she would run by or around him. When all of a sudden she stopped and turned to Mr. M and said "Micah, come run with me". She hadn't even noticed that he didn't get up and run around with her. I sat awestruck and touched at her innocence. He was just like any other kid to her. And she loved him no matter what.

Tired guy! Camping 2012
The first time Mr. M was teased was a particularly hard time for me. He didn't even notice that people we teasing him. We came home and while they were napping I called S and told him about it. I was feeling a little upset about it still so decided to call my mom. She wasn't home. I ended up chatting with my dad about it and told him "it's way harder for me then it is for him. He doesn't mind playing by himself. He doesn't see the kids teasing him. He's fine." My dad shared a theory that he had heard. He prefaced by saying, "This may or may not be true, but it's nice to think about it this way." He once heard a story that kids who come to earth and have "disabilites" like Mr. M and Mr. N(my nephew who is also disabled) were in the war in heaven, just like the rest of us, but they were injured. God knew things would be hard for them so he gave them special things to help them make it through our life here. For Mr. M it was; the ability to not see or be hurt by teasing, the be able to play well by himself, determination, drive, and a happy disposition. It really is nice to think of it that way whether it be true or not.
One thing I do know is that our Heavenly Father honestly does love us and helps us (when we allow him to) and blesses us.  I believe he sent Mr. M and Litle Miss together because they would rely on each other. It's not always him relying on her. There are times that she needs him just as much as he needs her. They challenge each other and teach each other. I think that as they grown they will find strengths in one another that they themselves don't posses and share it with each other.

Sibling fun in the back yard.

Are things hard for us because Mr. M has CP? Without a doubt! But it's those hard times that pull us up by our boot straps and strengthens us as a family and carries us closer to our Father in Heaven. I'm thankful for my challenges because they have shaped me into who I am now. I know the Lord will continue to bless us with trials and good times but it's because of both the good and the bad that we will be the kind of family and people that will be strong enough to endure to the end.


JaNae said...

(Saw the info on this on FB.) Bless you for being such a tough mom, no wonder you have the children you do!

Marci said...

I do agree that it is the trials that make you stronger, so long as you let it be that way. Way to go for persevering and not letting your trials leave you angry and resentful. I know from experience that is not as easy as some may think it is :)