What kind of mom are you?

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This is a question that I have been contemplating lately.  As most of you know now, my son Judah has Noonan Syndrome.  I have written about this several times now and it seems to be something that comes up in my heart and mind quite often.  February is National Noonan Syndrome Awareness month.  I have been reading a lot of posts on our support group page on Facebook.  They are doing the regular fund-raiser events: t-shirts, lollipops, art auction, etc.  I find myself wanting to help with things like this because the money does go to the foundation for research, meetings, webinars, etc.  The thing is, I don’t think I am the kind of mother that will wear a t-shirt or eat a lollipop that says, ” I love someone with Noonan Syndrome!”  It’s not that I don’t love my son, obviously, and I don’t judge the people who do wear/purchase the products.  It’s just that I don’t feel like advertising that my son has a syndrome.  I’m not ashamed nor do I want him to be ashamed, but the syndrome does not define who my son is so I don’t feel the need to point it out.  Honestly, half the time I forget that he has it.  I just see Judah.  Yes, we go to therapy 4 hours a week, we have to feed him through a gastrostomy tube every night, he is small for his age and has some delays, but to us he is our perfect little Judah Reece!

Right now, those are the only issues we have with Judah.  I know we have much more to tackle in the future but we will cross that bridge when we get there.  Right now I am just trying to stay informed and do as much research as I can.  I read a lot on our support group page.  Sometimes this isn’t so helpful.  Just last night I was crying to my husband about some decisions we have made and will have to make potentially and if they are/were the right decisions.  One of the decisions we have had to make is whether or not to put Judah on growth hormones (GH).  Many people in the group have questions about GH as there isn’t a lot of research on the matter.  As of now, with the information that has been provided and found, we have decided not to pursue GH treatments.  Judah has a 7 degree curve in his back.  10 degrees is “needed” to acquire a scoliosis diagnosis.  GH increases the risk of scoliosis and the endocrinologist that we have seen said that if we were to put Judah on the treatments he will have to see an orthopedist very regularly.  Also, Judah’s specific mutation for Noonan Syndrome is called PTPN11.  It has shown that these specific children with this mutation do not respond as well to GH as some of the other mutations.  In order to correct this, the endos often will increase the dosages of the GH treatments for PTPN11 patients.  And as of right now, there is no research to say that these treatments don’t cause other problems/diseases in the long run like cancer for instance.  There are many parents who have the same concerns that we do.  Others, though, seem to think it is a very simple decision.  They say things like, “If your child was diabetic, wouldn’t you give them insulin?  It’s the same thing for GH.”  I don’t find it as simple 😦

Other problems that parents post are things like their child is showing signs of possible autism, they have trouble making friends because of the syndrome, they notice they aren’t the same as everybody else, they are experiencing delayed puberty which causes more social problems and many, many more.  These are things we will have to conquer as Judah gets older and I am terrified.  One of my college professors and friends posted this article  tonight on Facebook:

http://www.huffingtonpost.com/maria-lin/special-needs-parenting_b_1314348.html

I can relate to every single one of these points.  Most people don’t know because as it says in #7, it is hard to talk about Judah sometimes.  Most people don’t know that we still struggle with things.  I posted about two weeks ago on my Facebook that Judah ate a raw banana for the very first time ever!!  I was so excited by this that I just had to post it.  We have been working on textures in therapy and that was a great breakthrough for him.  It was amazing to hear some family members express their confusion of not knowing we were struggling with such things.  I know that is partly my fault for not expressing it but I feel like they should be aware somehow of what we are going through.  I know no one could ever know unless they live with it but maybe the awareness will be there someday, or at least the WANT to be informed.  In my dream world, all of my family and friends would at least Google Noonan Syndrome or read a book about it.  Maybe then I wouldn’t feel so alone.

And most of all as I said before, I am TERRIFIED.  I am terrified that we aren’t making the right decisions for our son, that he will have a hard time coping with this in his life, that he will be bullied for his appearance or educational level, that he won’t have friends, that he won’t get married someday, that he won’t be able to have children of his own, that he will have learning disabilities, and the list goes on.  All I know for sure is that we love Judah and God is walking with us through all of this.  And maybe, just maybe I will be wearing a “I love someone with Noonan Syndrome!” t-shirt someday 🙂

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30’s a Bitch

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Introducing the all new Preacher’s wife from Spokane, WA!!!  I know it has been a while since I have posted, what I didn’t know was that my last post was in March, oops!  I really thought that starting this blog was going to help me clear my head a little but that has proven to be wrong.  Maybe if I utilize this more it would :/

 

I am going to let you in on a little secret.  I recently turned 30.  Shhh, don’t tell anyone 😉  And of course, I have been really depressed about it.  Not in the way you would think  though.  I am not depressed about it because of the getting older aspect.  Obviously I knew this was going to happen, I have been getting older all my damn life.  What depresses me is that in my youthful mind so many years ago, this was a huge milestone that I thought I would have life figured out by now.  You may all stop laughing at me now.  But seriously, I thought that by now I would have a career, I would have a house, regular friends that we hung out with every Tuesday night, a nice car, neighbors, a steady income, etc.  But to my surprise, 30 didn’t bring all of that.  Instead, 30 brought about another temporary move, no job little own a career, a cosmetology license I can’t even use in the state I am living in, complete strangers, ok vehicles they got us across the country thank God, and ongoing bills and student loan debt that I have no idea how we are going to pay some day.  For real 30, what the hell?

 

I can’t say that it has been all bad of course.  I still have my wonderful family and I got, and am getting to see things that I have never seen before.  But the realization that I came to tonight was that I still have no idea what I am supposed to do.  Naturally when someone asks me I put a smile on my face and come up with some sort of acceptable answer as to what my purpose is supposed to be.  Like presently, my purpose is to be a supportive wife to my husband who is starting his pastoral internship and of course, being a wonderful mother.  Did I mention that my four-year old is driving me crazy and I complain that my husband is gone all the time and I don’t get any help or a break from the kids?  Obviously I am failing at said present purpose.  At this point in time I am begging God to send me some sort of sign as to what I am supposed to be doing.  I recently read this book called, “A Dog’s Purpose” by W. Bruce Cameron.  It is about a dog who is trying to find what his purpose is in his life.  Little did he know that he would be serving many purposes over the course of many different lives.  This book was amazing and I highly recommend it by the way, as well as the sequel, “A Dog’s Journey.”

 

I know I am going to have many different purposes in my life time and one of the most important ones is loving all people and spreading God’s word among being a wife and a mother.  But here I am going to throw out there my human, selfish side.  What about me?  I know that the above purposes should be good enough but I want something else.  I wanted a career and still do.  So why the hell don’t I know what to do?  I feel like I have gotten lost along the way and have no idea where to start to look for myself.  Please, God, help me out.  If I ever needed help listening, now would be the time.  I apologize to my readers as this post will not have an answer at the end or some brilliant realization that I come up with on the spot.  What this post is really about is a soon to be preacher’s wife in a moment of weakness.  A preacher’s wife who wants to be more than that.  And her trying to find her way.  

 

I have hope I will find my way.  I need to prepare my  heart to hear Jesus guiding me and my mind to put it in action.

 

Therefore, prepare your minds for action; be self-controlled; set your hope  fully on the grace to be given you when Jesus Christ is revealed. – 1 Peter 1:13

 

 

Keys down the elevator shaft- I’ve come a long way!!

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It’s a funny thing, that space between the floor of the building and the floor of the elevator.  It may only be a couple of inches wide and you never would think a whole set of keys could fit in such a space, but they can!  And wouldn’t you know it, your husband doesn’t have his keys with him as they are hanging up in the locked apartment where you were trying to get to.  And wouldn’t you also know that it’s lunch time and all the people with access to the elevator maintenance room are on lunch?  What’s a girl to do?

Normally I would have been freaking out!  I would have been panicking and somewhat yelling at my husband, “What are we going to do!  What if they can’t get them out!  My keys have the only car key we have!  We need to get somebody right now!”  But instead I turned around and said, “Well, I hope they are easy to find.”  It came out so cool, calm, collected, and totally not sounding like me!  As I’m sitting here waiting for the lunch hour to get over and to see if they have retrieved my keys, it dawned on me how far I’ve come.  Sure, I still have my freak out moments, but they seemed to come a lot more frequently and intense than they have lately.  I don’t know whether it’s because of all the moving and different situations my husband and I have been in, or if it’s since my son Judah was born and all of the medical issues we deal with, or if it’s just since becoming a mother that nothing surprises me anymore.  All I know is that I am actually pretty calm right now and I am reveling in it 🙂

I have been telling myself that I have changed, but today I actually got proof.  This doesn’t mean my patience is any better as I am watching the clock like a hawk to see when lunch is over, but at least I am willing to give up the worry and have faith that everything is going to be fine.  They will find my keys and get them back to me when they can and I totally trust that.  It’s a great feeling to know that God has worked with me and the more I learn from Him the more I can give up to Him.  I know my keys going down the elevator shaft seems pretty trivial, but my faith has come through on a much bigger issue, where will we be living next year?  Honestly, I don’t care.  Sure I have my hopes but really, I don’t care.  I know God is going to send us where He seems necessary for Brian to get the most out of his internship.  I am even quite excited to find out where we will be going.  The thing I don’t like is the waiting.  I told you my patience isn’t that much better 🙂  Rumor has it we should find out before Easter which is in a week and a half and that makes me really anxious but I am also very trusting in that it will be a great adventure.

I know it has been a long time since I’ve written and I’ve missed doing it.  It seems like life has just been floating by so fast.  That’s why I hope the next step is my patience because it already goes too fast.  I am so grateful for the opportunities that have come up in our lives and for the constant interactions with God that have really made me think about this life and what I am supposed to be doing in/with it.  I am grateful for the change that has taken place in me and can’t wait to see what else happens.  I hope it first starts with them bringing me back my keys 🙂  

Working Class Worrier

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My husband asked me tonight if I was excited that I am almost done with my schooling.  All I could answer was, “Um, yeah.  But scared.”  Is that the reaction that I am supposed to have?  Aren’t I supposed to be really excited and happy about this?  I feel like I have been waiting for this for a long time and now that it is almost here,(January), I am absolutely terrified.

 

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!

A Mother’s Cry for Support

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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.

Prayers and Prejudices

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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 🙂

 

People come and people go. But the ones who stay……

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It has been a while since I have posted.  I apologize for that.  Just when you think you can start one of these things, life happens.  Summer is now at an end and the new seminary semester begins tomorrow, which means my husband will be back in class and the kids and I are left to miss having him around all day.  If I am fortunate I will get to talk to him for an hour a day before I head off to school for the night.  I just keep telling myself, ones of these days when life calms down……

 

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.