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.

 

Does it ever get easier?

As a mother with a child with special needs, I have to know now, does it ever get easier?  I can handle the medications, I can handle the therapies that come six times a week, I can handle the spoiled behavior that she learned being in the NICU for the first five months of her life, and the same spoiled behavior fifteen months after being discharged… shoot, I can handle both babies having a breakdown at the same time now.  The one thing that I can’t handle is the surgeries… I can’t handle the weeks prior, I can’t handle the week before, I can’t handle the day before, let alone the day of surgery.

I think I’m always fine but my anxiety manifests in ways my mind can’t control.  Physically the stress takes over my body.  All of a sudden theres something sitting on my chest, preventing me from taking a complete breath.  Just as abruptly my eyes fill with tears, I start making an ugly cry face and I can’t stop from sobbing, not to mention to hide that from the twins is a challenge, God forbid they see my ugly cry face.  Thats something you can’t forget.

I try to keep busy to prevent myself from imagining the “what ifs”.  Leaving me in a state of panic every time I think of it because every surgery comes with complications… of course it does, why wouldn’t it?  Your going under anesthesia, your getting cut open, in this case theres going to be a foreign object put inside, theres the hope that the surgery fixed the problem, theres the pain, and the recovery which is the hardest part.  Theres also the fact that all this stress is put on my 20 month old daughter.

Is she used to it by now?  This is her fifth surgery, her fifth in her 20 months here on earth.  Her two heart surgeries, the fundoplication/g-tube surgery, the surgery to remove her cystic hygroma and now the surgery to fix her fundoplication and repair her hiatal hernia.  Every one just as stressful as the last because her syndrome makes things a bit more complicated for the doctor.  Every one leaves me just as brokenhearted as the last because I can’t do anything to take her pain away.  Every single one leaving me more distressed than the last because as I get to know her better and as I watch her grow and learn and persevere despite the odds it gets harder to know life isn’t promised for anyone of us, including my children.

So should I be used to it now?  Could I ever get used to it?  Will we be able to go for longer than a year with out a surgery?  How about five years? ten? twenty?  Will she be able to live a “normal” life with out having another surgery right around the corner?  We won’t ever know ahead of time, but I can say it is an honor to be the mom of a very special set of twins.  I pray that they always strive to give glory to God and are able to see the positive of everything that happens in their lives, despite how difficult it may seem at the time.  I pray they always take care of one another and love each other unconditionally, and I hope with all my heart that they learn to show their affection more kindly.  For example, I hope Eidan learns to hug his sister more gently, instead of pinning her down on the ground and I hope Eva learns to use a softer hand and touch her brothers head, instead of hitting it with all she’s got.  Theres no doubt they are fighters, in every sense of the word.  Amen.

 

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