We had a relatively quiet weekend. *sigh of relief*
David has had more issues with low platelets and bleeding than he did previously. So much so, that he’s had several platelet transfusions and will probably need another blood transfusion tomorrow. His blood pressures have also been elevated, to the point that he needed intervention with fast-acting drugs. They are doing their best to support him as needed.
They are giving him another propofol holiday tonite. This time they took him completely off all of his pain meds and won’t re-start until 6am. He’s been resting comfortably for about 4 hours so far. We’re hoping he’ll get an even bigger benefit from it this time around.
The good news is his lymphocytes continue to be low. They are starting the day with that precious blood sample sent to the oncology lab, no sense in waiting for the regular labs to come back. Just do it! His skin is looking better with each dressing change. Not to say he’s anywhere near being out of the woods. He is not. But every nod of the head and murmur of approval is cause for celebration.
People ask me all the time “How do you do it?” When people first started asking me that, I shrugged, unsure what they expected me to say. Do what? How do I take care of my kids? Well, that seemed like a silly question – I’m a mom – it’s what I do. Whether that means basketball camp and birthday parties, or special services appointments and extended hospital stays. I have never considered myself special in any way.
Slowly, over the years, I have come to realize that while I’m not unique, I certainly do belong to a special group of moms. Mama’s that accept the task of raising kids that may need more guidance and care than others. Mama’s that not only accept the task, but handle it with grace and strength, and become better people because of it.
I have gotten to know several of these special mama’s and I want to introduce one to you today. Kathy gave birth to Oliver on Oct 15 of this year. He was diagnosed with Citrullinemia at a week old. She has already demonstrated such grace and strength in caring for Oliver and accepting this life, I wanted to share her latest article with you.
When I first read this article, it was like reading my own journal. Except I don’t think I could have written it any better than she did. The next time someone asks me “How do you do it?” I’m going to direct them to this article.
The Best Day Of My Life
by Kathy Pasveer
I can distinctly remember a few years ago, asking myself what was I doing here? What purpose do I have? Through all the trial and error, I never felt as though life would ever give me a break.. There’s karma, sitting in their chair, laughing…. pointing the finger. And I wonder…. what the hell? What did I do in a past life that has brought upon me this terrible luck? Nothing EVER seems to go right… Ever..
Then I became a Mother to a Special Needs Child…
Oddly enough I can still remember quite vividly the motions of the night Oliver had been airlifted to Winnipeg hospital. Not to mention the conversations, emotions, confusion and all that tied into the night Oliver had been clinging to life. The most infamous question I continued to pound myself with was.. Why?
I still don’t believe I will ever find the answer to that question… and quite frankly I don’t care anymore… What I used to be and what I have now become is the most important milestone I have achieved in my books. I became a Mother…. A special one.
I may walk among the people here on earth, and noone will ever know that I may be sleep deprived, or I may be struggling, or even so, know that I am a Mother to a Special Child…. But what does that matter? It doesn’t.
Mother’s to special needs children are capable of giving that extra special attention, “I” am capable of smothering my boy with extra special hugs and kisses, and I have grown to learn extra special patience. Oliver could have been born into any other family… but he was born into ours. I not only was blessed with his presence… He was also blessed with ours.
Much like the saying goes,
You don’t choose your family. They are God’s gift to you, as you are to them.
This rings true…
I used to look at people on the street and get so angry with them. Because while I’m stuck here in a moment in time struggling to find the strength within me to hold myself together, there were people, walking by, wasting their lives and they didn’t know what was happening to me… And of course they didn’t care… but for whatever reason I cared. I wanted everyone to know what was going on… I felt like telling the stranger next to me that my son was dying, and to please pray… So many people with such healthy, beautiful children,and they have NO idea that they’ve taken this “gift of life” for granted. So many of them… It’s all changed now… What I see that has happened was much more of a blessing than a curse… I was chosen to be Oliver’s mother…
My purpose in life is this… to be the best mother I can be to my two boys. To teach them right from wrong, and to enjoy life, to respect and love others, and so on… I used to say I would very much benefit from working for myself as opposed to working for someone else, and here I am. A full time job that allows me to stay home and I get paid in hugs and kisses! You don’t ever realise the way of the world and how things actually work.. It’s interesting, frustrating and down right unfair at times. It never seems to make sense but when we take a moment to relish in the time we have with people… You realize what the most important fact of life is….
It’s family…. Like a good friend said… People get upset at the thought of losing their job, or retiring etc… Feeling the need to work as many hours as they can, and work overtime when they can… All to make their bosses happy… when in the end, noone will even care about you or your work once you’re gone… There will be someone sitting in your office, in your chair, doing YOUR job, and you’ll be apart of just that… history.. forgotten….. But your KIDS… now THEY will REMEMBER the time you didn’t show up for recital, or soccer…They will remember you working long hours, and overtime, never there to tuck them into bed…. They are what is most important…. Time comes and goes so fast… We need to salvage the time we have and spend that with our families.
I’m still weirded out by the fact I am a mother…. I never ever thought I could be one, or a good one at that… Not with the role models I grew up with.. But out of all the people I know, It was “I” that had been handed this challenging gift that has turned my world upside down but right side up all in the blink of an eye…. It’s begun to build a better person inside of me, aside from my own feelings of being a mom… But when someone says they couldn’t think of a better person, and that I’m so strong to be dealing with this… I shake my head still.. Cause I’m sure if there was anyone else in my position they would do the same. It’s instinct… You do what you can for your children. You make the best of your situation….. Or so I’d hope..
Aside from my confusion, and anxiety about what lies next…. My eyes have been opened. I am a Mother….an Extra Special One…. There is Nothing I would change about my situation, for I am blessed, and have been granted this opportunity to take care of a sick little boy who needs a mother capable of handling all that comes her way, challenges, obstacles, whatever… I AM capable… and I am ready…. to face the obstacles, hurdles, challenges and then some. To be a mother takes effort, we all learn in our own way what works best for us… But to be a mother of a special needs child, you need strength……. extra special powers I like to say. There’s more to it than just being strong… You pull it all out from within. Somewhere there’s a reservoir that consists of strength unknown to man… and when we’ve exhausted all resources, it’s from there we find that little extra to keep us going.
God doesn’t just give you anything you can’t handle. Something I used to curse him about all the time… but this time around I no longer resent what I’ve been through and what has happened to me…. Because all that I have ever been through in life has brought me to this… I consider this to be one of the best days of my life, oddly enough… And to have realised that my purpose goes further than just being an ordinary mom… It’s being an Extra Special One… Makes me feel like the luckiest woman in the world… This is what makes everything I ever had to go through… good and bad, worth the wait..
I know there may be scary times ahead, and that’s ok… Cause I am now equipped with the knowledge I have, and the strength that I’ve found from within, to push through…. As long as my boys know that I will fight just as hard if not harder for them each and every step of the way, and that I’ve given them nothing but the best I can offer in love, support, hugs and kisses… then I’ve done my job, and it’s all that matters… As long as they are happy and content, so will I be…