A Letter To My Children As We Enter A New Decade

Dear Becca and Ian zt"l,

As we leave one decade and enter into the next, I have so much to share with both of you. How proud we are of you, all of your accomplishments with all the highs, lows, and challenges you each faced together and individually.

The 2010's...what a decade it has been. Full of unknowns. Ups and downs. Highs and lows. Joys and sorrows. Cries and laughs. As the days turned to weeks, weeks turned to months and months turned into each new year; we had no idea what lied in front of us. No matter where the decade took us, no matter what was in front of us...you both looked each day, week, month and year in the "eye" and took them on. All of us together had no idea where we were going but we were going to find out and leave no stone unturned. The decade started off searching for answers, not knowing the answers would forever change us.

So carefree. So full of life. Both of you were.  

A mutation of the VRK1 gene. Pontocerebellar Hypoplasia Type 1A. Pontocerebellar Hypoplasia with Spinal Muscular Atrophy. Letters and words which were foreign to us; in a matter of seconds became so familiar. We had no idea that two simple letters being out of order would change our lives. Hearing, that before we entered into the 2020 decade, our family of four would become three of us on earth and one of us in heaven  -- the likelihood Ian zt"l  would see his teenage years -- unlikely. To say this reality was devastating is an understatement.

PCH1A -- finding a diagnosis didn’t change anything for us, for Ian zt"l, with or without a diagnosis his prognosis was the same...Ian zt"l, our sweet boy, you were still going to pass away, way to early. In the early years of the decade, one of my fears was not knowing why, not knowing why, not knowing the what, not knowing how he would pass away...Becca and Ian zt"l, hearing the words " mutation of the VRK1 gene", "Pontocerebellar Hypoplasia Type 1A", " Pontocerebellar Hypoplasia with Spinal Muscular Atrophy" was a blessing. Those words took a weight off my shoulders, in a very strange way was a blessing. My heart hurt but in a different way, the pain in my heart was there and still sharp, that too was in a different way. I can not explain, but I was relieved to hear those letters and words. 

Becca and Ian zt"l.

Ian zt"l and Becca.

Separated at some point. The loss of a sibling is one kind but when that sibling is a twin, that loss is completely different. Becca and Ian zt"l, you didn't know what it was like to be one, you only knew what it was like to be two, a pair. You would have to learn how to be one. One on earth and the other in heaven. This was not in your make-up. Somehow, someway, and much sooner than we thought it would happen.

My wants and worries were constant. My wants, for both of you, was to have everything. For all your dreams to come true. My worries and wants were different for you, Ian zt"l, and for you, Becca. We, Mommy and Daddy, had to find a way to "come to terms" with the prognosis; "come to terms" with the reality. How do you do that? According to the research that was available in 2012, most of those with PCH do not live past childhood; especially those with PCH1A. "Come to terms", those words don't seem to be right. How do you "come to terms" with the fact that one of your children has a terminal illness? How do you "come to terms" with the fact that one of your children will have to say goodbye to their sibling, not just any sibling but their twin.

Treasure. Dream. Live. Worry. Joy. Laughter. Somehow we found a way to do all of that plus more.

Becca -- Over the past 10 years, you have gone from 6 to 16. You have grown in ways no child, preteen or teenager should have to. You have seen and experienced things most your age haven't. In some ways, you grew up too fast and in other ways, you lost a part of yourself, a part of your childhood. Medical words and treatments became part of your everyday vocabulary. Your life, as did all of ours, centered on the medical needs of Ian zt"l, as much as we tried for things to remain "normal." For you to have a "normal" childhood and for us to be able to give that to you.

I still remember the day you asked us to show you how to give Ian zt'l his medicine through his G-tube, so you could care for him. Holding back the tears, we showed you exactly what you asked. My mind was yelling at God for having to do this, while my heart was filled with more love than I could imagine because of your beautiful heart and love you had for Ian zl"t. I wanted to find a way to make it better for you. I knew you were in pain, I couldn't make it go away.

Becca, you took on each day with spring in your step. Your sping changed over the decade as you began to realize and understand just how your life would change. You found your safe place in your room and didn’t like to leave afraid you wouldn't be home when...the time came. Eventually, you overcame that fear and found safety in other places. Camp Louise. The Barn. Girl Scout events and sisters. You observed everything. You observe everything, take it in, all your choices and then make your decisions. As you have told me many times, "Don't ever mistake my silence for ignorance, my calmness for acceptance or my kindness for weakness". One thing has always been for sure….if anyone messed with your “little” brother, they had his “big” sister to deal with. Oh yes, we know, and so does he...you are older, just by a minute...and you, my dear, Becca, are never, ever going to let anyone forget it, especially Ian zt"l.

Becca.
You are one of our greatest accomplishments. You are resilient. You do things your way and regardless of the outcome, you figure it out for the next time. You have learned how to advocate for yourself. What works for you and what doesn't work for you all the while trying to do your best. Your empathy for others, especially those with different abilities and other twinless twins, out of this world. As we move into the next decade, you will go from 16 to 26. The college search, proms, high school graduation, heartbreak (a different kind than what you have already endured), college, Veterinary school or wherever you end up after college, maybe finding the love of your life.  And I can't wait to see the places you will go...all the while knowing and living that...not all twins walk side by side, sometimes one has wings to fly.

Ian zt"l -- The 2010 decade was different for you. Going from 6 to 13 to forever 13. You always had a smile on your face, well that was as long as you were getting what you wanted. The sparkle in your eyes could light up a room. You were always concerned about us, knowing where we were and that we, Becca, Mommy and Daddy would be okay when you went to heaven. Even the night of September 14, 2016, just hours before you took your last breath, you needed to hear we would be okay. I hope Mommy and Daddy were able to reassure you enough so you were at peace then. I also hope and need to believe you are looking down and can see that most of the time we are okay, whatever okay means.

As Ralph Waldo Emerson and the Spiderman poster hanging in your room says: "What lies behind us, and what lies before us, are tiny matters compared to what lies within us". Even before we found out your time with us would be short, you knew. There was not a day you were not in pain, yet you still did everything with a smile. Looking back, I can see nothing was easy for you, every activity and movement took more energy for you than others. Everything required extra work for you to achieve all you did. You got frustrated, you got mad, you got angry...you got all of it out by screaming or crying...then you moved on and did what you needed to do. Most of the time without complaining...well except for homework with "your" Stephanie.

Ian zt"l.
You too had a spring in your step. You found your safe places and loved to be there. Camp Simcha Special, Gilchrist Hotel, oh and let's not forget your imagination. Oh, the places you went to your imagination. You observed everyone around you. You knew your medicines and treatments better than anyone. And let's not forget you had a knack for throwing others under the bus, especially Daddy. And we can not forget anything Spiderman...and yes Peter Parker is and always will be Spiderman.

Without knowing it.
You both stepped up.
You both took on life full force.
You both looked PCH1A in the eye and said FUCK you,
You both said I am here.
You both lived each day to the fullest with the best of your abilities.
At the time, none of us knew this.
You can't go back and do life a different way.

As one decade comes to a close and another one comes to a beginning, Becca, and we continue to watch you grow into the beautiful person you have started to become both inside and out. Always remember to treasure, dream and live.

As one decade comes to a close and another one comes to a beginning, Ian zt"l, we will continue to move forward through our grief with some steps backward, but we will never get over it or find closure. We will remember it is okay to not be okay as Becca, Daddy and Mommy, together and individually, find our way, knowing you are looking down and watching us...with all of your working body parts.

Here is to the decade of the 2020's.