Are you done?

Ever since Sam and I married, we have been asked about having children.  First, it was "when do you want kids?”  If you know me at all, you know that I have wanted kids since I was a little girl, so that was an obvious answer.  The next question was "how many?”  I am unsure if Sam and I had a concrete answer at the beginning.  As a child I had always envision between four or six, because five is an odd number.  With each child, we added into our family we would stop and consider what changes an additional child would add to whatever our current situation was.  Then we were given Sonzee.

Prior to Sonzee, I honestly never really considered that we would have a special needs child.  Being in the field of speech language pathology, I was not even really fearful of having a child who might require additional attention, but then again I had never heard of CDKL5 prior to April 17, 2015.  

When I was pregnant with Sonzee, we thought for sure she was a boy.  We had two girls already and only one boy, so obviously this baby was a boy.  I spent an entire eight months envisioning a "girl’s room" and "boys room".  It only dawned on me a month before she was born that this baby could very well be a girl.  I nearly had a panic attack trying to figure out how we would be putting three girls into one bedroom.  (I suppose I should thank G-d for solving that problem).

When we were asked if we would have more children we would joke and say "fourth and final".  I wanted to put that on a sticker for my maternity pictures, but Sam said, "Don't do that, because what if we have another and then that child thinks he/she wasn't wanted".  (No, I am currently not expecting, but I suppose that was some decent foresight).

Prior to Sonzee being born I think I was undecided if I would "want" a fifth child, but I was fairly “certain" that we would be good with four kids.  Six is a nice solid family number, four is an even number of kids, and it would be the "perfect" family.  Now we have Sonzee and three other amazing children.  Yet when I am asked, "are you done?" my reply is not so straightforward.  "Undecided" is my typical response.  

I know I do not owe anyone an explanation as to why we would or would not want another child, but I often struggle with what people would think since we already have four kids and one is special needs.  Would our choice to have a fifth make people think negatively of us?  Shouldn't we just be happy with the kids we already have?  I struggle internally as well.  There are so many positives to having another child, but also so many unknowns.  

I personally do not worry about whether another child of ours would have a CDKL5 mutation, anything is possible, but it is not a hereditary genetic disorder in our case.  Could another child have a disability?  Sure, they could, but that would obviously be what was in the cards for us.  Are we crazy?  Well I would say yes since we have chosen to have four kids on separate occasions.  (Insert stick out the tongue face).

Usually I wonder about my older kiddos, but they have mentioned to us about wanting to have another sibling on multiple occasions.  Would Sam and I get a chance to be better "first time parents" in a sense?  (There would be nothing taken for granted that would be for sure).  What if Sonzee had a bad year the same time a new child was born?  So many questions to siphon through, so many answers we might never get.  Nevertheless, since everything often circles back to Sonzee, what I have been sitting here meddling with is maybe becoming a big sister is something we need to add to her adventure list?!

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Parenting is hard

There was a recent situation in our parent support group that has been on my mind over the past week.  It did not deal directly with Sonzee or myself, however, it was one of those emotional, electrically charged conversations that sends people into a tizzy.  While it would not be appropriate to discuss the nature of the topic itself, I feel almost obligated to touch on the topic of parenting and offering support.  I have been compartmentalizing my thoughts the last couple of days, attempting to sort them out while waiting for the post to begin writing itself in my head.  As usual I have been a bit caught up in how to accurately articulate my thoughts, however, tonight when I sat down in front of the computer I eventually found the words to convey a message.

No one knows everything about every situation.  I personally offer a window of our life with Sonzee, but that is just what it is, a window, a snapshot.  No one knows exactly what goes on here unless they have a camera set up within my house and have a live feed (complete with audio) that they are continuously watching.  In my blog I share my feelings as openly as possible, but I assure you there is more that is left to your imagination.  I can paint a picture with my words, but you will interpret my writings in a way that most benefits you. There is nothing wrong with that, but when you walk away and close the computer and return to your family and your life, our life with Sonzee is still being written.  When I create the words that you read on your screen they are carefully chosen.  I can suggest by my words what tone I wish the post to take, but there are times that a post is happy simply because I want to believe that the situation I am writing about will be.  I sometimes am so burdened by the weight of a situation that I cannot possibly put a happy twist on it and those are my more "depressing" posts.  No matter what, there are days when even though you have a glimpse into our life by viewing the adorable pictures I post on Facebook , you do not have the entire picture.

After I publish my posts I receive emails, comments, messages, phone calls, etc. offering words of encouragement, offering support, offering ideas of how to possibly deal with our situation.  They are always appreciated, they are always read, they are always considered.  You may see me put those thoughts, comments, concerns, etc. into action, you may not.  You may disagree with my style of parenting, you may think you would do things differently, and you very well might if you were in our exact situation.  That is perfectly fine, that would be your right to do what YOU felt was best for YOUR child if you were in the same situation.

Emotions can fly really high when it comes to children and parenting in general.  It is because of that basic fact that you should never feel it is acceptable to insult, berate, or question anyone's parenting.  You might think your choice is right and that you would make a better parent to the child who's parenting you are questioning.  It is always EASY to say what you "would do if...", but the truth is, until it happens it is all projection.  It is what you think you would do.  It is highly possible that you would find yourself surprised at some of the decisions you might end up making if you found yourself in another family's exact situation.  If you ever find yourself in a similar situation to a person seeking support and you would not follow the same path they have chosen, then by all means you can disagree, you can make a different choice; but that doesn't make your choice better, that doesn't make you right, and that certainly doesn't make the other parent wrong.  

When you offer someone support that does not mean you agree with any or all of their parental decisions.  When you offer support that does not mean you would do exactly what they are choosing to do.  When you offer a person support it simply means you are acknowledging that this person is in a less than ideal situation, it means you want them to know they are not alone as they travel down an undesirable path.  When you offer support you may offer suggestions that could possibly offer comfort and or compassion, however you do not know how the receiving end will interpret your words.  When you offer support you might find yourself sharing a similar experience you have found yourself or loved one in and you may share that in your specific case you tried XYZ and the situation was resolved.  If you are the type of person to make recommendations please acknowledge that just because you offered a solution does not mean it is viable in this person's situation.  If you offer a solution it does not mean that if the person does not execute the exact plan you are proposing that this person is a bad parent.

When you offer someone support you should ask yourself what type of support is this person seeking?  Are they looking for a solution or are they simply just wanting you to hold their hand as they walk a pebbled path?   You should ask yourself if your words will be perceived as supportive and if you were this person would you want these words spoken to you?  Will your words be a crutch to help this person stand, will your words actually help them out of the darkness, will your words be beneficial to them, will your words actually provide support?

Parenting is hard.  You should never feel you will do it better with someone else's child.  You are entitled to your feelings.  You are entitled to your thoughts.  However, you do not know the whole story, no outsider knows the entire story.  If you were worthy enough to be given a glance into a personal situation then take the information and process it in a way that you feel appropriate.  If you are concerned then you should privately reach out in an attempt to gain clarity, but know that you are not owed such clarity, you are not owed an explanation of any kind.  Parenting is hard and until you are living in the exact situation you have no right to act like you would do better nor pass judgement.
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Never judge a book

If you look at the Sonze what you will see is a baby.  If you look at her while she is in the newborn to 6 month music class, you would have no idea that she does not technically belong.  She is at least 6 months older than most of the kiddos yet she looks smaller than the majority of them.  She does not have a mouth filled with teeth; she is just now finally getting her first tooth.  She does not sit on her own or hold onto toys, and she hardly raises her head while on tummy time for more than 5 seconds.  When people look at Sonzee and then ask me how old my baby is, there is definitely a moment of silence and shock after my reply.  Based purely off looks and outward presentation, the bear can easily be misjudged.

I am guilty of falling for the misrepresentation myself.  I purposefully changed out all of her clothing to only have 12 month or 12-18 months so I would not keep "forgetting" she is not 6 months old.  I honestly do not care if the pants have to be rolled or if the shirt is falling off her shoulders...it is just easier for me mentally to see her in age appropriate clothing.  I can be thrown off when I lay her down and she just rolls over and immediately sucks her thumb.  We all know a typical one-year-old does so much more physically and expressively, that combined with her small stature it can make us all think there is nothing more than just a young baby in our presence.

However, we would be wrong.

Sonzee is unable to coordinate her muscle movements the way they need to be in order for her to achieve physical achievements.  She is also unable to coordinate her oral structures so they can produce sounds and words appropriately.  Her eyes have a similar deficit in the fact that they are unable to communicate appropriately with her brain in order for her to see objects appropriately.  To sound technical, Sonzee suffers from global apraxia.  This is not the only deficit she is dealing with, but it is one that negatively affects her significantly.  What can be confusing when children present with a form (or all forms) of apraxia, is that it can be assumed they do not understand.    

However, that would be wrong. 

Sonzee understands.  If I give her ample time, she responds to me in different ways.  She lets me know her likes and dislikes.  She lets me know when she is happy and sad.  She lets me know when she wants to do more of an activity or she wants to do less.  Trapped inside her little adorable body is a Sonzee Bear communicating with me and letting me know she understands.  I get so excited when she shows me that she is present, that she is awake inside.  When she closes her eyes before she is put underwater at swim.  When we tell her "clap, clap" and we see her try to move her hands together, even if there is no coordination and to a bystander it looks like she is not doing anything remotely looking like a clap.  When I say, "here is miss Holly", and we both do a double take because we could swear she tried to reach out for her.  When someone she loves enters a room and she hears his/her voice and she makes a sound or moves her body excitedly.  When she is lying down and we say "kick, aba", and she kicks Sam in the face multiple times.  Her little personality is adorable, it is shining, and it is there!    

It can be easy to be caught up in the moment and forget that my "baby" is capable than so much more than how she physically presents.  It is much easier to simply judge a book by its cover.  Although I am getting to the point where I really have to watch what I say around her; it would be really uncomfortable for us all if her first and only word ends up being a profanity.  However, that would be a really awesome conversational piece.   

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