Happy Birthday to our cute little Jacob!

Jacob

Wednesday was Jacob's birthday............wow, where has the year gone! I definitely must be getting old! It seems like just a few months ago we were driving down to McKay-Dee Hospital after the flurry of sending our barely day old baby on a life flight trip to that hospital ahead of us. Jeff and I sat quietly, both lost in our thoughts, wondering what we would be facing when we arrived at the hospital.

I kept thinking of the moment when I first held Jacob after he was born. Looking into his cute little face and then looking into his eyes. I remember asking Jeff, "Do you think his eyes look right?" They seemed different to me, but I wasn't sure why. I was too tired to care, just happy that the intense, fast, non-medicated labor was finally over! I remember thinking how funny it was that evening when I tried to get Jacob to nurse how he would keep falling asleep before he really got into it. I mentioned this to the nurse and she didn't say much, which I thought was a little odd. I also thought it was a little odd that I didn't hear the usual chorus of "Oh, what a beautiful, perfect, baby you have" from the nurses, like I would usually hear every time I had delivered a baby. At the time, I thought I was being a little overly sensitive and shrugged it off.

In the early morning hours, when Jacob still wanted to doze, rather then eat, the nurse got my attention when she said that if he didn't eat, they would put a feeding tube in him. I had never heard any nurse threaten this before when my babies wouldn't nurse. So I desperately asked for a formula bottle and promised to get him to drink it....which he did quite happily!

After a few hours of sleep, I awoke....happily content with my sleepy baby in the crib beside me. I got up, showered and got dressed as the nurses took him for some 'routine' tests. I waited and waited, but my baby didn't come back to my room....the doctor did. He asked me how I was in his very short 'don't mince any words' manner and then threw the ice water at me: "I think your baby has Down Syndrome...." What? My heart stopped.....I hadn't even imagined this, ....or had I? I thought of his eyes again, they WERE DIFFERENT, I knew it! I tried to pay attention to what the Doctor was saying, but my head was swimming, I thought I was going to be sick. Then I heard words like 'life flight', high bilirubin count', low white blood cell count', low oxygen saturation.....etc. There's more?!? Wasn't the Down Syndrome enough? He finally left, giving me some time to call and find my husband. I heard myself telling Jeff as soon as I heard his voice: "He has Down Syndrome. I told you his eyes were different, I told you something was different!" And then I couldn't say anymore. The pressure in my eyes, my throat, my head made me dizzy.

So what were we to do now? Well, actually, it was all laid out for us----we were going to follow his life flight, going to go to Ogden, going to find out what else was wrong, we're going to figure it out!

Suddenly, Jacob was lost to me. The sweet sleepy baby that I'd coaxed to drink all through the night for fear some nurse would stuff a feeding tube down him was gone and all I could think about were the labels----Down Syndrome, bilirubin count, heart problems, low oxygen saturation, etc.

I think I clicked into efficiency mode----give us the information, tell us what to expect, explain the problems, how long, when, where, why, how much, who can watch the kids, how close can I stay to him......It seemed that first week at the hospital was simply a blur of information, information, information, get him to eat, make him nurse, ask about the bili count, the white blood cell count, try to figure out what the heart specialist was talking about and memorize words that made no sense to me. It was a good week, a quiet week for me, being with my baby, talking to doctors, reading tons of information, talking to specialists about every aspect of an unfamiliar syndrome. Getting ready to conquer the new foe.......Down Syndrome and all of it's complexities. I had done this with Autism, I would do it with Down's. I could do it. It was my cause.

Here I sit now, a year later. My sweet little 1 year old is snuggled in his bed, playing with his pull-string toy, talking to himself as he drifts off to sleep.

I remember that Jacob has Down Syndrome when the OT comes to work with him and shows me exercises to help him learn to crawl.....oh yeah, my other babies were trying to WALK at a year, not crawl. But we are so proud that he can sit so straight and tall and play with his toys, that I can't imagine that he's really not 'in the normal developmental range.'

I remember that Jacob has Down Syndrome when the Developmental Specialist comes to my house and exclaims with delight that Jacob has met all of his goals for the year and that we'll need to be setting new goals and what would I like those to be......well, I don't know, what should they be? I suppose I need to review what 'normal' one-year-olds should be doing at this point so that I know what 'goals' are appropriate for Jacob.

I remember that Jacob has Down Syndrome when I take him to the ENT and he exclaims in delight that the ear tubes are still in place and that he has had to dig out a lot of ear wax out of those 'extremely small' ear canals that are pertinent to Down's kids. And is Jacob a 'typical' Down Syndrome child, he wants to know? Whatever is that supposed to mean---how should I know, I've only had one of them!

I remember that Jacob has Down Syndrome when Primary Children's Hospital sends me a reminder that it is time to make an appointment with the Cardiologist to check Jacob's heart again to see if they can determine where that leak is exactly........oh yeah, we used to have to carry around an oxygen container wherever we went...that seems like another lifetime ago.


But when I hold Jacob this is what I see......

a sparkle in his eye when he catches my eye and starts doing 'patty cake' before me,

an arm wrapped tightly around mine, reminding me that I am someone special in his little life,

a sweet temperament that calms the whirlwind of boy noise and tumultuousness around our house,

a round little body warming my arms when I pick him up out of his crib in the morning, and he wriggles in delight,

the way he shows excitement with his whole body----tightening his cute little limbs, opening his eyes wide and panting excitedly as I quietly try to 'shush' him during church---even though I want to laugh at how funny he is,

the funny, questioning look in his eyes when he is babbling, "Da, Da, Da" and I say, "No, say, Ma, Ma, Ma"----he stops, looks at me and then continues his "Da, Da, Da" chorus with greater gusto,

the Light and Love that I feel from him every time I hold him in my arms and give him a squeeze----he is so pure, so completely filled with love and peace,

He is Jacob-----with funny, whispy hair; soft, meek eyes; softly grasping fingers; and a gummy smile that lights up my heart.

I don't know if this is Jacob, a child with Down Syndrome. To me he is simply Jacob, my darling little baby that has filled our house with love as only he can....just as each of his brothers has done before him, with their own unique personalities and sweetness. I want him to become all that he can, all that he is destined to be. But I don't want to 'fix' him..... I don't want to 'conquer' Down Syndrome. Instead, I want to walk hand in hand with it until I understand all that I can do to help Jacob be all that he is meant to be. But, for right now, he is my little Prince of peace and love.....and that is not 'normal' .........but it is perfect!

I love you, little Jacob! Happy Birthday, big boy!