There is no one ANYTHING fits all, in parenting a child with special needs.

I have boy/girl twins and that by itself is a challenge, as you can imagine.  Throw in your daughter having special needs, well… that becomes unimaginable for many and quite honestly in the first year of their lives it was for me too.  I am not sure how I survived, quite literally.  Fast forward to today, when they are almost 2 1/2 I know how I did it.  It was with God and my love for these two beings that were created in my body.  It was an honor to be chosen with this difficult task, and having twins in these circumstances I am able to appreciate the differences in having a “healthy child” and a child with special needs.

First, it is times like what I am going through now, when my daughter has had a fever for almost 3 weeks and blood work, a stool sample, and a urine analysis all came back negative, that I feel completely useless.  Not being able to treat your child and not knowing what is going inside their complicated body is enough stress to turn your hair white… Trust me, I know firsthand.  Holding your child when you know they don’t feel well while they are burning up and just thinking is their going to be another surgery?  Another diagnosis to add on to the many already?  Or is it worse?  Your mind goes to worst case scenario because that is what you are now conditioned to think.  It also trickles over to your “healthy child” that when they get a sniffle you over analyze because that is what you are trained to do.

For my son, I know the usual symptoms of a child that is getting sick, and thanks to WebMD I am now my own doctor, but daily I am looking for these things on my daughter, as well as, is she retracting more than usual?, is her edema getting worse?  How is her heart?  Is she getting enough fluids through her g-tube?  Which specialist should I make an appointment with for her and who’s going to watch my son if I have to take her in an emergency and my husband is at work?  Many people will never understand and that is ok.  Not everyone is supposed to, but it is my job to stay on top of their health, even when I am sick myself, which happened last week.

I recognize that while there are some children in the special needs spectrum don’t have as many issues as my daughter, but I also recognize that there are many children that have even more.  I am grateful with what I have and I know these struggles are helping shape both of my children to be warriors that actually care about people other than themselves.  If I could do it all over again, I absolutely would and if I could take on more children with special needs, I would do it in a heartbeat.  I was created for this and I am so glad I finally found my purpose through these two.

So when you see a child with special needs I want you to understand, we know as moms that you see our child through a different lens, you don’t understand off what diagnosis that have, what some of the equipment they are using does, and even why they may look “different” and of course I can only speak for myself here,  but ask a parent of a special needs child in a respectful way if you really want to learn, and just don’t stare.  If you ask me education is key in spreading awareness, and you may not get the same openness by some parents because they may be more reserved and possibly be more sensitive to certain approaches and terms that some people use that can be offensive to some, so just try to be considerate about those things.  You must also understand there is nothing sad about our children, and the only sad about a situation like this is if a parent didn’t care about their child, but that applies to all children.  Another thing, these parent that care for these unique children have more than likely experienced valid fears in loosing their child through sickness, surgery, simply birthing them or they could be told that they are going to outlive their own child so keep these things in mind.

You may not have been chosen to have a child with special needs, or even a family member with special needs but be mindful on your body language and approach (if you so choose to do that).  Show them respect and appreciation, because as it even applies to all parents, it is easy being a parent but it’s really hard being a good one-and throw in all of the extra elements that I mentioned, well that parenting status is the highest of them all, and chosen for just a few.

 

Sometimes it is OK to cry… in the shower.

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I knew I needed a photo of today of just us, my love.

As I took a shower tonight I had to remind myself that it was ok to cry before I actually did.  I should start by saying it was a long day, and if you want to include from the start of my concern for Eidan, then we can say its been a long month.

To begin, by niece has type 1 diabetes so it has been in my life for 17 years now, so when Eidan started peeing more than usual at night in bed, I started to worry.  He has been waking up in the morning with the front of his shirt, his pants, and his bed soaked with pee.  His tantrums  also seem to come to a complete stop when I give him something to drink, telling me that he is more thirsty than normal so I made an appointment with the doctor a few weeks ago, but then I cancelled it because I thought I may have been reading into it too much.

More recently, my mom and my husband got to see and feel what I was talking about and they concluded that yes, it was a considerable amount.  So today was the actual doctors appointment and as soon as we got into the room he was fighting everyone for the first hour of vitals (including the blood work and placement of the pee bag).  The second hour he would only sit in my lap and watch videos on my phone, while we waited for him to pee in the bag.  The third hour was us walking around in the green grass trying to initiate the pee that we had been waiting for, for three hours already until it finally came.  The whole morning I was nauseous at the thought anything being wrong with my son, and by the end of the appointment, I was hungry and I had to get home to feed Eva through her g-tube, and make something for Eidan.

When we got home I got some confusing results from the nurse… first, his blood sugars from his urine was a bit high, but after I mentioned that he had just ate right before he peed in the bag, so that number was ok, then I got another call telling me that he needed to see a endocrine specialist, on top of the urology doctor because they were just a little concerned with another number (I can’t recall the name because I was in a daze because I though he was just cleared).

I can’t exactly express how I feel because I don’t know how to feel, other than I was prepared for Eva’s issues but I can’t say I am prepared for this… I don’t even know if this is a “this” yet.  But I can tell you that after my shower and my long cry I felt absolutely chosen for these two children.  Despite any more bumps in the road that we may have, no matter how many more shower cries I have from now on (whether this situation is a problem or not), I don’t care how “hard” my life may be, I can say one thing for sure… I can’t do shit without God, period.