Only 3 weeks left until we meet baby number 3 and while part of me is excited and impatient, another part of me is content to just sit back and enjoy the little time I have left with my 2 boys, before we introduce the chaos of another child, even more sleepless nights, and a new family dynamic!
My exhaustion over the last few months has kept me from updating all of you and I apologize for leaving you hanging. It seems as though my best processing, as of lately, is occurring in the shower, which is not the most conducive environment in which to write a blog. I've also been finding it hard to find the time and energy to return simple phone calls and texts, let alone steal away an hour or so of uninterrupted "me time" to pour my heart out.
So, again, I apologize and I'll view tonight as an opportunity to spend time with myself and I won't dwell on the fact that tomorrow may require more than my allotted 1 cup of coffee to get through the day.
I guess I'll start with one of the big updates we've gotten over the last few weeks. Xander's genome sequencing results came back and he has officially been diagnosed with Mowat-Wilson Syndrome. Which to us is a huge relief. It means that we weren't barking up the wrong tree for the last year and a half and more importantly, we haven't been overlooking any other underlying issue.
It also brings a type of closure to that part of our battle - we now know, without a doubt, where we belong. However, that being said, the diagnosis itself really doesn't provide us with any more answers. We do know that his specific deletion within a single gene on chromosome two is a "de novo mutation," meaning that it is a new mutation and neither Nic nor I passed it on, so the likelihood of us having another child with MWS or Cole being a carrier and passing the syndrome to his children are similar to the general population, which seeming as there are only 250-300 cases of MWS worldwide - is pretty slim!
Given the fact that we are expecting number 3 in a few short weeks and didn't wait for this year long process to culminate before choosing to continue on with our lives and our family plans, this news is nice reinforcement that we made the correct choice by not letting the fear and uncertainty of possibly having another child with this challenge rule our lives. And to be quite honest - Xander is such a joy to have in our lives, that if we were to face this challenge with another, I'm confident that we would do so with grace and style.
In fact, lately one of the things that I have really been itching to process in my own mind is the fear that I see again and again from people who don't have special needs children of what they would do or how they would handle the situation if it were dealt to them. In some ways I completely understand, because I was there once. Before children, I couldn't imagine what it would be like having to raise a child who was different or challenged. I used to think that those parents had a strength I could never achieve. In other ways, it breaks my heart. It's not that I take it as a personal attack on my son, because in my logical mind I know that it's not. But, when you have a child with special needs and you continually hear people saying that they wish for nothing but a healthy child, healthy child, healthy child... it starts to eat away at you. I know the intention isn't to offend, but really - in a way it seems as though they're saying "I wouldn't want your child".
It's not an easy place to be in and until you have a child with special needs yourself or god forbid, there is an accident or an illness that leaves your healthy child with new challenges - you won't fully understand. But what I can tell you is that love for your children is blind and unconditional. I love my kids so much it hurts, just the same as all of you, and my love for Xander is no less than it is for Cole and will be no less than it is for this new baby, because love doesn't discriminate.
That's the part I think that people on the outside have a hard time comprehending. It may seem difficult when looking in that you can love a child who is unable to walk and talk as much as you can love a child that is able to hold a conversation and participate in all of the activities that you enjoy - but I'm here to say that you most certainly can, because it's your child and you love them for who they are, not for who you think they should be or maybe sometimes wish they would be. You love them for their smile, their laugh, each little aspect of their personality that makes them special and unique to you.
I'm also here to say that if faced with the possibility that you may have a child that's unhealthy or not "typical", life won't end. You will find joy and love in that child, just as you would any other. Because the love of a parent for their child has no bounds and although it may frighten you and you won't be sure where you will find the strength to carry on at times - it will be there. You will grieve for the child you always dreamed of having, you will get angry from time to time, and then you will embrace the amazing and wonderful child that you were given and continue on in your new role, as one of those parents you always viewed with admiration for the thought that if you were dealt that situation, you could never handle it - and look at you now - not only surviving, but striving.
Ok - now I've gotten myself way off on a tangent, but I needed to get some of that off my chest, because it's been eating away at me lately. And I'm by no means attacking anyone specifically, Between the birth boards that I have been part of during this pregnancy, friends, and friends of friends, I have been counseling so many people lately regarding having kids with special needs or the possibility of having them, that I've been waiting for a moment in time when I could process all that's been going through my head as I try to help frightened and uncertain parents through a difficult journey.
Well, tonight is my time and you are just coming along for the ride - so buckle up!
What I can tell you is that each journey of a special needs family and parent is unique, just as each child is unique. So if you're reading this and you're a parent of a special needs child. I'm not claiming to know it all or that my experiences and feelings align completely with yours. But, this is my reality. I'm sharing what it means to me, through my perspective, to be in my shoes. I will tell you that sometimes when I look at other parents with special needs children I have the same feelings many of you do. I look at their situation or challenges and I think - "wow, I'm glad that's not me because I'm not sure if I could be that strong." So, don't feel alone or on the outside if you truly can't grasp what I'm saying when I swear to you that if you were in my situation you could do this too.
We all feel it, even those of us who walk the path everyday. Because we are walking the path with love and like I said before, love is blind. We love our children for who they are, regardless of their needs and challenges, they make us better people - typical or not. Your children make you a better person, as do mine. But when we see something that is unknown to us, it is frightening and we may not initially see the love that is there, but only the burdens that seem to come along with the situation. That is the problem - if you look at any relationship for only the burdens and hardships - anything would seem hard. Because every relationship is trying and takes work, but if you embrace people and understand where they are coming from, who they are, and start to see them for all they have to offer, you understand the gifts they have to share and before you know it - it's not hard anymore. It's not scary and you can completely embrace the idea that if dealt a different hand, you would rise to the occasion too and you could become one of those parents that you never thought you could be.
Wow - I'm on a role of getting off track tonight! There is one more thing that I wanted to share about Xander's diagnosis though, before I go. So, as I was saying the MWS has been confirmed, but I hinted that it still doesn't quite leave us with a lot of answers and what I mean by that is his specific micro-deletion within the ZEB2 gene is unique. The lab has never seen another in that specific spot on the gene. So,basically, there is no other known case that is exactly like Xander's, Meaning that although we do know where we fit in, we don't know for sure how it will effect him and what symptoms may or may not present themselves over time. For example, most all MWS kids have seizures and "knock on wood" he hasn't yet. He's also pretty healthy and lately is making huge strides (for hiim) with is ability to communicate and social interactions.
So, all in all, we are going to enjoy this small victory while we continue down this path of unknowns with a smile on our faces, thankful for the family we have, the children we love, the friends that support us, and the little one who is about to enter this oh so crazy world of ours!
Thank you all for taking this journey with me tonight... if my calculations are right Xander should be up in about 10 minutes - so, here's to four hours of sleep, a baby arriving in less than 3 weeks, and a strong cup(s) of coffee!
