baby attacks camera

My Identity

I have to tell you a story: The other day I had to take Mr. Boy to Walgreens to get a prescription. It was 14 degrees out, but we live in South Dakota, so we can't just stay indoors for several months out of every year.  So I bundled him up and we were off. As I was getting Mr. Boy out of the shopping cart, I could see a lady in my peripheral vision standing there and assumed she was waiting for a cart, so I hurried and grabbed him up to get out of the way before I put his hood over his head, which already had a beanie over it. As soon as I had him out, the lady lunged at us, grabbed Mr. Boy's hood and angrily put it on his head as she said, "Put his hood on!!! Thats just dangerous!!!" and as she stomped away she yelled, "Gosh, Some people!!" What she said was insulting enough, but it was her tone... the air of disgust with which she spoke, that really got to me. At first I was too flustered to react so I said, "thank you," and quickly walked out the door, red faced. I said to myself, whatever.... I don't care. But by the time we reached the car, 5 seconds later, I was screaming expletives at her in my head and trembling. All I wanted was to walk back in there, tell that woman off and then punch her in the face. It was like this crazy woman had overtaken my mind and body. So I called my mom to vent and scream and tell her how surprised I was that I was this angered by what the lady had said, because I did not really care (obviously), but as soon as I hung up, I burst into sobs. It soon became apparent to me that I cared. :)

You see, I tend to look like I should be in the 5th grade and am self-conscious that people look at me and think I must be some irresponsible young kid that must have caused my child's defects and caused his premature birth by taking drugs or drinking etc. So I, this woman who 'doesn't care,' intentionally tries to dress up every time we leave the house or the therapists come to our home, so that people think I'm older, responsible and mature. I actually have a huge fear that people will judge me the wrong way. I know that I am a good mother, I just want so badly for random people, who do not matter at all... to think I'm a good mother. Its dumb, but true and I didn't realize how deeply rooted this desire was until this woman made my nightmare come true.

I have always struggled with my self image and identity, seeking to find it in the way other people viewed me as opposed to rooting it deep within the Lord's heart. In school, I tried so hard to appear cool and smart.  Once I had a job, I tried to appear wise and successful, but if I felt that image was not being projected well enough, then it dictated my level of joy. I thought that I didn't have to worry about my identity now that I am a stay-at-home mom, because who doesn't love a stay-at-home mom right?? But Satan knows how to ruin anything doesn't he? It's funny how miserable we can make ourselves when we don't see ourselves the way the Lord does, and trust and live in that reality everyday. In this case, it led to my complete and utter breakdown over someone's silly/random comment. The only opinion that matters is the Lords. And He sees me as a beautiful daughter. I am a daughter of the King. Lord, help me to find my identity in You and You alone, and find joy in every day and every person for who they are and not for what they think of me. Help me to see the world through Your eyes, see people how You see them, and view myself, the way You do.

I don't need more people to tell me I'm a wonderful mom... there will just be more people I'll then want approval from tomorrow. What I need is to spend some time with the Lord and let Him tell me who I am.


Psalm 139:13-14
 ¹³ For you created my inmost being; 
   you knit me together in my mother’s womb. 
¹⁴ I praise you because I am fearfully and wonderfully made;

crawling

giggles and rolling

Time to baby proof the house!

The past week Mr. Boy has suddenly made huge strides in his mobility. Before, he could barley roll from his back to his front, and couldn't really get into the crawling position from a sitting position, and definitely couldn't crawl. I had to put him in a sitting position or prop him up standing, otherwise he was stuck. But his week he has learned to: go from sitting and pull himself up to standing at the coffee table, and go from his back, roll over to his front and get into the crawling position, crawl, and push himself back into the sitting position! And yesterday he even crawled all the way across the living room floor. We are so proud of him!

And none of this was accomplished with the help of that awful standing device I mentioned a few months ago, that the therapists gave us. I just couldn't wrap my mind around how it was ok for him to be strapped into it, based on his anatomy so I never put him in it. I finally asked our orthopedic surgeon about it one day and he said that I was under no circumstances to put him into that thing! He confirmed my thoughts that since Mr. Boy's pelvic bone is separated and points out, he will correct this in the next surgery by breaking the pelvic bone and fusing it back together correctly, bringing the bones together at that time. So there is no use in trying to force his legs forward and together at this time unless I just wanted to cause him unnecessary pain and frustration. It isn't a muscle stretching issue, its a bone structure issue, just as I had thought. I'm so glad I stuck to my instincts on that one!

Excited after pulling himself up to the coffee table

Starting to crawl

Learning to be Assertive

Those of you who know me, know that I am typically far from assertive. For a very submissive person, it is quite hard to be told when your child is first born, that you have to be his advocate against the drs. I like to believe that all Drs are all-knowing and perfect, so I don't have to worry about their judgement. Who am I to say what care is best for Mr. Boy when I don't have a medical degree? These arguments worked well for me while Mr. Boy was in the NICU because I hardly felt like his mother, much less a professional in his care since they took care of him 24 hours a day while I just saw him and helped out during the day. But even once Mr. Boy was home, I still felt powerless to assert myself in any decisions regarding his health. I was told when to feed him, how to feed him, how much to feed him, how to play with him, how to stretch him, how to do his diaper, how often to do his diaper, and even how to hold him... one therapist told me that the way I held him wasn't a good way to stretch his muscles so I should hold him another way. Plus, there just isn't a lot of information about Mr. Boy's  condition online or even in the medical journals, if I wanted to find 'my own way.' There is little research about these cases because they are so rare and because it was only recently that people really survived infancy with this condition.

The Lord has really been working on my lack of confidence and helped me out in a huge way by giving me new friends!  I found a private facebook group of other families from all over the world, that are dealing with the same birth defect, and have been truly blessed to know them ever since. David said it was like a burden was lifted from my shoulders when I found them. For the first time, I could laugh at the crazy things we were going through, because I had other moms who understood and shared their stories. We were no longer dealing with this "alone." They also empowered me in so many ways. When Mr. Boy was first diagnosed in the womb and we asked the dr what Mr. Boy's life would be like and what kind of prognosis he had, the dr said he had no clue and that we really wouldn't know until we could find some other parents to ask because it's just too rare to know. And our Urologist always reminds us that there is no "one way" to operate on these kids because there just isn't enough research to prove one way is better than another. So this fb group is not just an anchor for me, but a huge medical resource. I get to hear what all the other drs are doing for these kiddos around the world and have the power and confidence to go to our drs and suggest things, say 'no' to things, and demand other things.

After talking to the parents in the group on Monday, I got really motivated and called our GI dr and Urologist for different things and the Lord blessed my endeavors. I asked the GI dr to refer us on since we are not getting anywhere and he is still vomiting 10 times a day, and we can't figure it out. I suggested a few hospitals that we had heard specialized in GI issues, and the one that looked like the best, is where our GI dr did her fellowship, and so she said she would be happy to refer us, but she could also call them up and talk to them about Mr. Boy directly, which is better than a referral since now we do not have to travel all the way to Wisconsin (where the hospital is) for care. So that was a huge blessing. And then I called our Urologist/Surgeon and he called me back directly (usually you just get a call-back from a nurse... but he's just lovely), and asked him about changing some major things about Mr. Boy's upcoming surgery which is about 6 months away. He loved my suggestions and said he would do a lot of research on this and talk to some other specialists and get back to me in a few weeks. Needless to say, I felt like a superstar by the end of the day. We have really been blessed with the most wonderful drs all along the way, but its great to have the power and confidence to speak up when I want things done differently with Mr. Boy's care, and even better to finally have the wisdom and knowledge to back it.

Bouncing in the crib

Dad propped him up and the bouncing commenced.