Why am I terrified you ask?  Well, a number of reasons really.  There is always the fear of not being good at what you went to school for.  Having to be out on your own making it work.  In my industry that has a very direct effect on your income, so that is also a fear.  I am scared about finding a schedule that works for my family.  Daycare is so expensive and my husband will have classes during the day so I have no idea what we are going to do about that.  And not to mention Judah’s doctor’s appointments.  How many days of work can you miss for that?  How understanding will the employer be?  Will the daycare provider charge more for Judah’s special needs in feeding and PT?  Will I be able to find a job when we move next year and then when we come back?  Those are just a few of the musings running through my head.  I realized that most of my concerns have to do with the kids.  I never thought about this stuff before now.  Usually when my husband and I moved it wasn’t a big deal.  But now there is a lot more to think about.  

I’m sure most if not all of the working moms out there can relate.  As much as my 3 1/2 year old can get on my nerves I think I am going to miss them, a lot!  I need my mommy breaks just like the next person but I honestly think that is one reason why I am scared- is to be leaving them in the hands of someone else.  When I worked before right after we had our daughter it bothered me a little bit that she was in daycare.  I felt like I missed out on things and that she didn’t see me enough.  Now with two little ones I think that guilt has doubled.  I like being able to go to school with my daughter and field trips and things.  I never miss one of Judah’s doctors appointments.  I have to be there and get the information first hand, otherwise I feel like I miss out on important developmental tips for him.  They are so young and I feel like I need to be there.

I know other people do it.  There are a lot of working parents out there that do this.  I guess I am reaching out to you and asking, “How do you do it?”  I know God will walk us through this and come up with the best situation for our family and I will just have to let go and give it up to him.  But I still want to know from all of you, how do you do it?  Does the guilt out weigh the paycheck?  Do the little things you miss with your kids out weigh the interactions you have with other people?  

I’m not saying that I am not going to work.  I will try to get a schedule that works with my family the best that I can.  Whether that be nights and weekends again, I will do it.  All I am asking is how do you cope with the guilt of not always being there?  If you couldn’t tell I am kind of a control freak when it comes to information about my family.  I always have to know what is going on and every little detail of what they are doing.  In the end I will give it up to God and make whatever he sets before me work for our family as a whole.  There just might be some tears in the process!

Judah Reece, 9 months old

Last night through a Noonan’s Syndrome Facebook support page I found out that a 15 month old boy from Denmark passed away from pulmonal lymphangioectasia- which is lymph in the lungs.  The mother of this boy had posted a cry for help on what to do and how to treat this a few weeks ago.  As you are supposed to do when you can offer some words of advice I posted our experience with this when my son Judah was just born.  Obviously our situation was treatable but poor little Rufus was not.  As I was reading the mother’s post last night about her son passing away, I could not stop weeping.  My daughter, Blair who is 3 1/2 asked me what was the matter?  I told her that mommy was sad because a little boy had died.  She got upset and told my husband that she wanted to see that little boy and wanted him alive, that she wanted to see him alive.  At 3 1/2 years old and having not met this little boy, I didn’t figure it would bother her so much.  Maybe it was because her mommy was crying but I felt like she understood.  She proceeded to come over to me and sit on my lap and ask me if I needed a tissue.  This of course made me smile because at times she is more the mommy than I am.

Since I read this last night, I cannot stop thinking about little Rufus and of course, my little Judah.  Rufus and Judah have a lot in common.  They both have the same mutation (PTPN11) and very similar lung problems although, Rufus had them later on in his life.  Which of course makes me wonder if Judah’s problem with his lungs could come back or if it is forever solved.  We still don’t know what kind of problems Judah will have  in the future, we continue to have struggles with him growing.  We are being proactive to try to catch any learning disabilities he may have, eye issues and continued feeding support and not to mention seeing an endocrinologist.  Children like Rufus remind me of how blessed I am to have my son and that he is a very happy boy.

The other side of this though reminds me of the struggles we have/will have with him as he continues to develop and the struggles that he may have as well growing up.  It is never easy for a parent to learn that their child/children will have special needs.  We all pray and hope that our children are born healthy and stay that way.  My husband and I decided not to tell anyone about the possible Noonan’s diagnosis until the results came in, which was the span of two months.  During that time we talked about it, cried about it and prayed about it.  And when it was confirmed we did more of the same.  It took us a little while before we could actually tell our family without crying.  You never know what the response is going to be and can’t really prepare for it.  I do have to say that we were surprised at some of the responses.  People told us that it could be worse, that Judah could have died.  They told us that they wondered if something is wrong because of some of his physical features.  They also said things like, God picked you two to be his parents because he knew you would love him no matter what.  Are any of these supposed to make us feel better?  We are grateful and thank God that we have our little boy and of course we love our children more than anything.  I just find that some of these responses are supposed to make me not sad about it or at least they make me feel like I can’t be sad about it.

 My husband and I still struggle with this a little bit.  Although Judah’s doctor appointments have slowed down tremendously, we still have some big hurdles in our future.  We are having to plan our lives around settling down in a place that we are going to have certain resources for him, like a good feeding clinic and other doctors that actually know about Noonan’s Syndrome.  Always having to be in or around a major city with these needs is a little difficult to figure out when you are trying to pick a first call placement right out of seminary.  Without these restrictions the first call process is already hard!  Yes, I understand that there are other families out there that have more restrictions than we do, we are friends with a couple of them, but that doesn’t mean that our restrictions are less important.  Our friends that have more restrictions than we do remind me of that.  They are the ones that told us that we should feel bad about it, that it is ok to feel that way.  That our child’s health issues are no more/less significant than their child’s.  That if we ever need to vent or have questions on how to get help to come to them.  And they have definitely saved my life for saying so.  I know that people who don’t have these problems can never understand what it is like.  I don’t blame them for that.  What I do wish is that they would not belittle our feelings or try to make us feel better about it.  Just some support is the most helpful thing you can do.  That’s it- support.  It’s as easy as that.  We just want to be heard with compassion and not pitied.  We aren’t looking for answers, just to be heard.  

I want to thank all of those people who have prayed for us and have given us support and continue to do so.  Even though Judah does not have three appointments a day anymore, the support now and in the future for his development is still needed.  We are blessed to have the family and friends that we have and continue to learn and grow with Judah and his doctors on how to treat Noonan’s Syndrome.  And a big thank you to Rufus, that his life may change other’s in the future because he taught doctor’s in Denmark how to treat pulmonal lymphangioectasia and that other children may just make it because of him.  Thank you Rikke, Rufus’s mother for the strength she possesses and passes on and for being an ambassador for not only her son with Noonan’s but for all the people diagnosed.  I have learned so much from the support page and will continue to visit it and learn more as Judah grows up.  In my opinion, you can never know too much.

So, tonight I was tooling around You tube and I was watching a video of Adele singing her famous song “Someone Like You” when I just happened to glance down and read some of the comments.  I couldn’t believe my eyes!  There were so many comments on how “fat” she is and they wished they never would have watched the video.  I can’t believe that someone with such an amazing voice all of a sudden gets disposed of because she is a plus sized woman.  I honestly thought that we were over this but apparently not.  I am just amazed at how judgmental people can be.

Then I got to thinking- what would happen if our God was that judgmental?  Only the absolute perfect people were picked to live eternal life.  None of those uggos or fatties; just the absolute beautiful ones.  It doesn’t matter if you are a believer or not, you have to weigh a certain amount or look a certain way to get in the pearly white gates.  Can you imagine what heaven would be like, or hell for that matter?  It seems to me that most plus size people and the so-called “unattractive” people live their own personal hell each and every day anyway.  Just a thought.

When my son was born I thought he was the most perfect baby I had ever seen- except for my daughter of course  When the doctors came in about a month after he was born and started talking to us about wanting to do genetic testing they were pointing out all of these physical features of his that were “abnormal”.  That was probably one of the hardest things I have ever had to listen to in my life.  I guess only in a parent’s eyes your children are perfect.  I like to think that of God with all of us.  Yes we all have our flaws and unique characteristics, but He created us in His vision and because of that we are all perfect in His eyes.  He knows what is in our hearts and even if we stray away from Him, He always gives us another chance.  Why can’t we do that?  Why can’t we look beyond what we physically see and see what He has instilled in our hearts?  Imagine what this world could be like.  If everyone put aside their prejudices and hate and loved each other as they would want of themselves.  I know I am not the only one to think about this.  Our pastor asked a similar questions a couple of weeks ago during his sermon and we all came up with the same answer- a perfect world.  No war, no hate, no killing, no slavery, no murder.  It is all too good to be true.

Somebody asked me this week why I am so nice.  I honestly didn’t know how to answer that right away but I thought about it a little bit and said, “Because I have no reason not to be.  That is the way God wants us to be.”  The person kind of looked at me funny and walked away.  I am assuming they aren’t regular church goers or acknowledgers, otherwise it wouldn’t have come to as quite of a shock.  I can’t remember who said this to me once but they said, “We don’t have to beat Christianity into other people to let them know how God works, all we have to do is treat them the way that God would, show them love and respect, kindness and equality.  That is how people will learn Christianity.”  I am a firm believer in this.  When people hear that I am a future pastor’s wife they kind of back off a little bit but really I am just a regular person!  I am not going to preach to them that they need to go to church to get to heaven!  I am just going to be non-judgmental and be there if they ever have any questions and feel comfortable asking.  

I did something this week that I haven’t done in a while, I paid for the person behind me in the Starbucks line.  If you have never done this I highly recommend doing it just once to try it out.  You don’t get to see the person’s face or reaction at all- it is a total surprise.  You are supposed to do this to make that person feel special.  It should not be for your own gratitude- but for theirs.  A total selfless act.  With my excitement I try to envision what the person’s reaction would be and it just makes me smile from ear to ear knowing that that day, that moment in time, I touched someones life.  It may not be in a very important way you might think, but what if that person does it for someone else later on?  What if that person is so touched that they don’t lose all hope in humanity?  I would say that is pretty important over a free coffee- but that is always nice too

I was thinking today about all the people who have come in and out of my life.  Twenty-nine years of people.  The only way I can come close to remembering all of them is looking at how many Facebook friends I have  And I know a lot of people who aren’t on Facebook!  It is an amazing thing, friendship.  We had a close friend come and visit for the weekend.  I can’t remember the last time I had so much fun.  It was great to just hang out and catch up and be yourself.  I met this person ten years ago and my husband met him eleven years ago.  I have known him as long as I have known my husband.  Somehow God has kept us together through all the changes in life.  We never lost track of each other and I am so grateful.  That is what seems to happen.  My husband and I have moved a “few” times in our life and it seems that every place we have lived I always found a new best friend.  But as soon as life would take us in a different direction those “best friends” got lost in the mix.  Sure we still keep in touch every once in a while through Facebook mostly, but that is about it.  

But that doesn’t mean they didn’t have a purpose in my life.  There comes a time every so often that an experience or memory brings those people back into my mind.  I have learned something from everyone I have met and everywhere that we have been.  Like I said in a previous post- being married to my husband, there is never a dull moment  When you are experiencing something for the first time, in that moment you have no idea what impact it will have on your life.  It isn’t until much later that you finally get it, it suddenly clicks in your mind.  For some reason there are these hidden lessons everywhere!  I haven’t figured out if we don’t get it at first because we aren’t listening at that point in time or if God just wants to surprise us.  There is almost always something to gain in every opportunity, even if it is just experience.  Life is such a wonder, learn from it!  What are we here to do?  Learn the ways of the World, deal with them in the way that God has intended for us to do and pass on that knowledge.  If we mess up and deal with it in our humanly way, learn from it and try again.  We are all a work in progress, as long as we are moving in the right direction.

Every day I check my Facebook, read the new statuses, see what people are up to.  And I am definitely a photo stalker.  I think it is great to see how the people you know have changed throughout the years.  Some surprise me and some don’t.  I’m sure my story has surprised a few at least  It’s great to see the paths people have taken and everyone changes everyday!  It’s amazing!  Social media can be such a great thing when used properly- but that is all I will say about that  It’s great to see how you have touched people’s’ lives and who remembers you.  You can never really know if people think about you unless you tell them.  Have you ever told someone how great they are or how much you cherish their friendship?  When you do it just makes them feel so great inside!  To tell someone unexpectedly how great of a person they are could really brighten their day.  That is my challenge to you this week.  Tell at least one person how wonderful they are, how kind or how caring.  That you love them or cherish their friendship more than anything.  How they have touched your life or taught you an important lesson that you will never forget and are forever grateful.  For those of you who believe in karma, watch what happens next.  For those of you who believe in God, watch how that person regards you in the future and how their life changes.  For those of you who believe in just loving your neighbor and being a kind person, watch how your actions can change a person’s attitude, self-esteem and confidence.  Every one of us needs that little extra boost every now and again.  Our friend that came to visit put on his Facebook status that he thinks my husband and I are “two of the greatest people in the world.”  I don’t know about you, but that just made my day pretty darn bright.  Thank God for great friends, experiences, and lessons throughout our lives.  Amen.  

As I am listening to a story or listening to one coming out of my own mouth, there is a constant war going on in my mind.  ”You would really like to see the good in people, they just really don’t know any better, maybe they just need a friend?  No, no, no.  They are doing this on purpose, they like the attention even if it is negative, they drag down anyone who tries to be their friend! ”  Which side usually wins you ask?  Take a wild guess….  I can honestly envision the angel on the right shoulder and the devil on the left gently whispering in my ear.  Where is Jiminy Cricket when you need him anyway?  Wouldn’t that be great!  Give a little whistle and someone would show up to tell you what to do?  No more decision-making for me, I’m just gonna let someone else do that for me!  I won’t ever do wrong again!

Truth is, we are human.  We will all do wrong again even if we do have a Jiminy Cricket on our side.  Isn’t Jiminy just another form of our conscience, God?  The funny thing is, is that we don’t even have to whistle!  He is already there trying to lead us in the right direction.  We just always seem to think we know better for ourselves than He does.  I definitely struggle with that at times.  Thinking I am in control of my own life and where I go.  If anything in the last seven years of my marriage I should have learned that I don’t have control at all!  I never thought I would move to Minnesota and that my husband would be going to seminary to become a Lutheran Pastor!  I never in a million years said that I would be a pastor’s wife.  And I definitely wouldn’t have picked myself to be a mother of a special needs child, I just don’t have the patience!

Boy am I grateful that my God knows me better than I do.  As much as I dislike the term, “God doesn’t give you more than you can handle,”  I think there is some truth to that.  I find myself just going day by day and making it work.  Some days are better than others, sure, but when life truly happens, at the end of the day, I am still here!  Over the last few years I have come to learn some of my own strengths.  I’m not a terrible wife and mother, we keep food on the table, I manage to get decent grades at school,we take Judah to all of his appointments, we keep in touch with friends and still find time to update my blog  We are growing in our faith every day.  We are about to start a new Bible study at church that I am excited about.  I taught in the last one and believe it or not, some people learned  a few things from me!  I don’t know the Bible well but I hope to learn it as we go and continue to gain knowledge of our Lord.  I know that if I keep my mind open to learn more and more about our Savior that He will continue to grow in my heart and that makes every day a little bit easier to get through.  I know without these things I wouldn’t have made it this far.

So, next time I want to tell a story or hear someone else divulging information, I have decided to listen to my Jiminy Cricket.  It is not our place to judge and I always feel awful afterwards so I could just about imagine what the other person would feel like if they heard what I/we were saying.  I am determined to win that war in my head and progress to the person that God intended for me to be.  And hopefully, it will spread like wildfire!

As my three-year old daughter is screaming from her room that she doesn’t want to take a nap, I am praying that she doesn’t awaken her 8 month old brother who is sleeping in the bedroom down the hall.  I am sitting at the kitchen table in front of the laptop, my husband is sitting directly across from me in front of his laptop, and the apartment is a giant mess all around us.  This is a typical day in our household.  As much as I would like to say that my house is always clean- it isn’t.  There are always toys in the living room, dirty dishes in the sink and on the counter, and mail, books, dishes and more mail on the table.  As much as we try to keep up with it, our lives are so chaotic that it always gets away from us.  There is always something to do and always something I forgot to do.  For those of you women who have had children, I am a strong believer that you lose brain cells when you have a baby.  I used to know every detail of life, the whereabouts of everyone’s belongings, phone numbers, names of books and movies and if I have seen or read them before and much more.  It seems now that I forget more than I retain.  

For some reason this is really hard for me to come to terms with.  As a mom and wife I like to be on top of everything.  I like to be depended on to know what is going on.  This has been an important characteristic for me since we have had our son, Judah.  Judah was born at 34 weeks and has been diagnosed with Noonan Syndrome.  For those of you who don’t know what that is, here is an excerpt from the Mayo Clinic website:

Noonan syndrome is a genetic disorder that prevents normal development in various parts of the body. A person can be affected by Noonan syndrome in various ways: unusual facial characteristics, short stature, heart defects, other physical problems and possibly lower intelligence.

Noonan syndrome is caused by a genetic mutation and is acquired when a fetus inherits a copy of an affected gene from a parent (dominant inheritance). It can also occur as a spontaneous mutation, meaning there’s no family history involved.

There’s no specific treatment for Noonan syndrome. Management focuses on controlling the disease’s symptoms and complications. Growth hormone may be used to treat short stature in some people with Noonan syndrome.

Judah sees many specialists and has many appointments and it is a lot to keep track of.  This is when I despise my “mommy brain” the most.  Luckily I keep an updated calendar and an accordion folder full of Judah’s info but sometimes that just isn’t good enough in my mind.  I don’t know who’s standards I am going by, mostly my own, but I keep them pretty high.  I try to tell myself that this is what others expect from me but deep down I know it is all my doing.  I strive for perfection and may be a little OCD about it sometimes, but dammit, if I can get it all straight, that is one less thing to worry about in the world, right?  

Wrong!  As much as I would love to be that perfect wife and mom, I know that it isn’t quite possible.  God makes us who we are and all we can do is follow that lead the best we can.  People always tell my husband and I, “God picked you to be Judah’s parents because you could do it the best and love him no matter what.”  For me, that is really hard to believe.  I know that sounds odd coming from a future pastor’s wife, but we have our moments of disbelief and hopelessness just like everyone else.  That is what makes it easier to relate to people and talk through it.  I thought, “Why would God choose me, someone who always said I never wanted kids in the first place, one that forgets everything, and cries over the littlest things because I get overwhelmed with thoughts so easily?”  Well, I will tell you why… Because when you ask for patience, God gives you opportunities to be patient.  When you pray to Him to help you better yourself, He doesn’t just change you overnight.  He builds you up from where you were before.  I am definitely a work in progress, but I like to think that I am making progress with a little help from everyone around me.  Now I don’t strive for perfection, I strive to be the human that God put on Earth to love the people and things around me, including myself.  Those, I believe, are some pretty good standards to live by.