Friday, November 11, 2011


As I sit here, in the floor by Wyatt's crib, playing him James Taylor (because we don't have a nurse and he has been up since 3:45 a.m.) I can't help but think of perfection, his perfection.

For a bit now, I have started and stopped many blogs.  It seems they all talk about how terrible my life is.  They all begin telling you all the latest developments, both medically and developmentally, for Wyatt.  This information is very straightforward.  My blog then goes to that dark place.  It seems all I ever do is complain on here.  And once I do, there is always someone there to tell me to get over it, in not so many words.  Some have hurt me, unintentionally, but most have tried to hep me back up.  I realized only recently that maybe I didn't want help back up.  Maybe I wanted to dwell and wallow in my self pity.  Don't get me wrong, there are days that all I want to do is wallow.  I want to consume myself with sadness.  I don't know why, it tends to take over.  But those days are happening fewer and fewer.  Anyway, I realized that  I never talk about how incredibly perfect my child is.

Wyatt has the most perfect nose.  I have no clue who it came from.  Really.  Mike has a pretty awesome nose, I must say.  I, however, do not.  I inherited my Grandmother's nose.  I think it's the Lafferty nose, or it could be the Blackburn nose.  However, it's hers and she can have it back.  At any rate, Wyatt's is perfect.  As are his toes.  I am NOT a feet person.  They sweat and smell and are yucky.  But not baby feet.  They are sweet and soft and simply adorable.  Don't even get me started on his hair.  Even if he did get my unruly curls, they are simply beautiful on his perfect head.  And that perfect crooked smile.  I feel blessed that Wyatt does have a smile at all.  Many Moebius people do not.

I can go on for hours, but you get the picture.  He is perfect.  As Mary Poppins put it "practically perfect in every way."

Wyatt can now sit on his own for several minutes at a time!  YAY!  When we came home from the hospital from our "extended stay" we made goals with both his PT/OT ladies, as well as his TEIS teachers.  My goals for Wyatt were simple:  I wanted to be able to tell when he was in distress, I wanted him to be interactive in play, and I wanted him to be able to sit, all by his first birthday!  You can image my elation when realization hit me that my baby met all of his goals!  I know mothers say they are proud of their children, but there are times when I think my heart is literally going to burst with pride, and Wyatt is only 11 and 1/2 months old!

Wyatt and I work and play together everyday.  Of course, I can tell when he is totally finished playing and/or working.  Lately, he has been putting his arms over his eyes, as if to say, "no more".  It's really cute, actually, but knowing that is his cue, I typically cut activity time off there.  I push Wyatt sometimes, but in no way do I want him to associate playing in the floor with mommy as "work".  So over the past week or so Wyatt and I have been working on clapping. I do it first for him to see, then I hold his hands and clap for him, then I hold one arm still while moving the other to clap, then I let him try it.  At first, he didn't make the slightest effort.  Then, he would hold his hands in front of him, looking and studying them.  For the longest time, he would put them together, just holding them.  Then, yesterday, Auntie Becky (or the Anti Becky, I like to call her but I love her!) was here.  We were all in the floor playing with his Leap Frog Spin a letter toy (that I call baby crack).  When he was over it, we started clapping.  When he would clap (with assistance) we would clap for him.  Very soon, he got it.  When he clapped for the first time, unassisted, I felt so much joy.  So much pure, amazing, heart bursting joy.  I got teary-eyed and emotional.  These are the moments I am thankful I am here, with him.

Wyatt has to have tubes put in the 21st.  Unfortunately, it's the same week as Thanksgiving and his birthday.  While I knew this was coming, I just stinks.  I pray that the procedure is an easy, simple, successful one and we are all well and good for his birthday!

So for two months now (YES 2 months) my child has been getting his first molars.  And, if you know Wyatt, he doesn't do anything half way, we have 4 coming in, all at once.  Needless to say, he has been a bit of a bear.  He is so restless in his sleep at night and chews both index fingers in both sides of his mouth most of his awake hours and has a callous on his left thumb from sucking/chewing it in his sleep.  Our doctor doesn't recommend OraGel.  She says that they swallow it and it causes their throat to numb and not be able to swallow as well.  And, given Wyatt's swallowing issues, we don't want to make anything any worse.  My doctor also says not to give him chew toys in the freezer.  She says that it can cause the gums to get frost bitten.  She does, however, recommend a cold, damp washcloth with all of the water rung out of it.  Wyatt could give two poos about it.  So, we suffer.  We even talked to her about the teething tablets, but she says no to those as well.  Her fear is that he will aspirate on some of it because of his swallowing issues.  So, we tough it out.  

I have been so very blessed to have found the Moebius Syndrome Foundation.  I have connected with a few mothers so far, and have found such solace in the information and support they offer.  It's kind of like we are all in a private "club".  I mean, you can talk about your child's delays or achievements with other parents, but they don't really get it.  Don't get me wrong, the support from everyone, Moebius parent or not, has been incredible.  But when a Moebius mother says "ask you doctor about" this or that, it's because they have had the same issues.  It's such an incredible comfort.  

When I initially registered with the Moebius Syndrome Foundation, they sent me some awesome information.  They also sent Wyatt a super sweet Moebius t-shirt.  In the information I received, there was an article that struck me so profoundly, that I try to live by it daily.  While I don't recall who wrote it, or where it came from, it was such an incredible epiphany to me; like I woke up.

The article talks about having a child with special needs.  It's like planning a trip to Paris.  You saved up for this trip for years.  You have dreamed about it.  You have bought all of the travel guides.  You learn French.  The big day comes and you get on the plane.  You land.  But, when you get out you aren't in Paris.  Instead, you are in Holland.  You didn't plan this.  You don't know the language.  You don't have the books.  This isn't what you planned.  The moral of the story goes on to say that even though you aren't where you planned on going, Holland is also beautiful.  And if you dwell only on things you miss about Paris, then you will miss the beauty of what you have.

In the end, my eyes are open.  Wide open.  I appreciate so much more.  I know Wyatt will never be like most children.  He will struggle.  He will be teased and taunted.  He will have his heart broken by words and people.  But, in the end, my son will excel.  My son will climb many mountains, but once on top, he will plant his flag, for the world to see.  

Wyatt playing in the laundry basket.  PT said it's great to  help him sit. 

Wyatt's first Halloween.  The world's cutest Charlie Brown!

1 comment:

  1. Charlie Brown....great idea!

    Thanks for continuing to share your journey with us. I am glad that you have been able to meet other moms who can encourage you, relate to you, and provide a place of rest for you.

    BTW, I will be at my sisters the week prior to Thanksgiving. I won't have a car, so I am kind of stuck there during the day, but would love to catch up if you are able to come down for a visit one day.