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.

Camping 2012

 We had planned to go up to Seattle for a week to spread my Grandmother's ashes in August but it didn't work out with all of the family. So, we decided to do a couple days of camping and a couples days of Stay-cation at home. We borrowed my parents truck and pop up trailer and headed up Big Cottonwood Canyon. It hit me on the way up there that we are so blessed to be 15 min from the canyon that we can just take a little drive and be up in nature. I never realized how awesome that was until one of Micah's therapist who moved here from Texas told me that that is the reason they moved to Utah. So, a 30-40 min drive and we're there! M-boy got sick as we were driving around looking for the perfect spot. Poor guy. While we were setting up the pop-up the kids were playing in the cab of the truck. The window happened to be down and little miss M found herself in a scary position and of course me, being the stellar mother that I am, grabbed the camera before I saved her.

 This year for the 4th and 24th of July we had fun fireworks and so little miss M kept saying, "Daddy making a fireworks" I think she kept waiting for the explosion and shooting lights but it never came. She was thoroughly confused. 

 Do you have any idea how hard it is to get two two year old's to look at the camera and smile...at the same time? This is the best I got. I have no idea what little miss is doing but this really is the best shot.

 Little miss is determined to be a big helper so she was very sure that you always needed her help.

 My M-boy is such a sweetheart. He's almost always up for a cuddle. I just love it.

 We spent some time inside playing games and working on some occupational therapy with Mr M to help him use his right hand. He's getting so much better. We also had a few rodent friends that figured out how to get into the trailer so they had fun seeing them scurry away when we ran after them with a broom.

 S is very tech-y so we had the laptop, and the tablet to watch movies on and play games even though we were camping. One morning after breakfast it was kind of nice for us to all snuggle and watch "A Bee Movie" on the lap top. The kids thought it was fun.

 Whenever the kids are naughty we make them look at us. We used to point at our faces to get them to look. Now, whenever I tell Miss M to look at me, whether she's in trouble or not she points to her chin and turns to look at us. I have a feeling we are going to have a lot of pictures like this...

 Mr M has really gotten into cars lately. He loves to have at least one at all times. A lot of times I find him crawling/scooching around the house with one in each hand and one in his mouth. He has some sensory issues that we're working on so for him to have something in his mouth is not uncommon. Because he doesn't walk on his own he was almost always covered in dirt, rocks, and wood chips. I found that harder for me than I would have thought. I was always trying to watch their hand or dust off their clothes and it was an endless battle that I found I couldn't win.

 Just a few camp grounds away was a little creek. It was beautiful and VERY COLD. The twins enjoyed throwing rock into the water and climbing over rocks and trees.

 This is a miracle to have such a cute picture of her especially with her looking normal and smiling. Ever since she was a baby whenever someone would pull out a camera she would refuse to smile.

 Mr M is always happy and doesn't care who knows it. He's gotten very inquisitive and very sneaky. It took a little bit for me to catch on and stop blaming Little Miss for everything. Poor girl!

 We figured it would be a little difficult for Mr M to use his reverse walker while camping but we wanted him to do lots of walking and taking good steps. He walks well while holding a hand and gets very excited. Little Miss is as sweet as can be. She'll run ahead, turn around and say to her brother "walk to me, walk to me" to encourage him. She sure is a blessing in our house. I'm so glad that they are both here.

 Mr M! What is it about toddlers, especially boys, that they have to find a way to COVER themselves with dirt. Diaper changes were always a surprise while we were camping.

 We're training them young how to drive Papa's truck!

All in all it was a fun trip and looking back at the pictures I'm glad we did it. One thing I learned is that I liked camping a lot more when I was a kid. Camping was a lot more fun when I was little and didn't have to be the one packing, and cleaning, and cooking,  I guess I owe my parents a big thanks for all the times they did that for us kids. The memories I have are wonderful and now I get to help create those memories for my kids no matter how much work it is.