In Loving Memory Of

Jordan Howard

Aicardi Family,

I wish…..

I wish SO many things and one of the things I wish was that I had told you to go ahead and print Jordan’s picture and whatever story you wanted to print when Ande asked to include her on the web-site after her birthday. I didn’t have any problem at all with her picture and a letter being included on the web-site. I wanted her beautiful face included with the other Aicardi Angels. I just thought I would write something special, you know…spectacular to go with her picture…and I never got around to it.

I wish all this because Jordan will never have a place in the “Our Girls” area……her story will go to “In Loving Memory” and that along with everything else breaks my heart.

Jordan passed away in her sleep Sunday night (early Monday morning, October 13th.) Has it been 3 weeks already? It doesn’t seem possible, but it also seems so surreal and so very long ago. I decided to go to her neurologist to have her death certificate signed and as hard as that sounds, it was also so cathartic for me. I don’t think I realized how much I needed to see this group of people who had played such an important role in our lives for the past 13 years. Dr. Mathisen believes she most likely had a seizure and developed an arrhythmia. I think that is probably true, but I also think she was tired. It was unexpected, yet expected, at the same time. Our little angel had taught us as much as she could and her little body just couldn’t stay with us anymore. I just didn’t realize how very, very tired she had become. One thing that make me happy as I look back in retrospect was how happy she was the last 2 weeks before she died. I think she knew and God gave her an insight into what she had to look forward to. Maybe she smiled and laughed even though she was tired just for us, just so we would know. Maybe that’s why I was upset Sunday night and crying on her shoulder and talking to her (do any of you have a better listener?) I was upset and didn’t really know why, but I got so many kisses from her sweet little neck and cheeks…I miss that more than words can say. I miss how she smelled and how soft her skin oh and those beautiful eyes and rosy lips. I miss her so much. We miss her so very much.

I don’t miss seizures and all she endured to stay with us.

In that respect, I think it <b>makes it easier</b>. I KNOW she is being taken care of better than I could EVER imagine and she can do anything she wants. She has no limitations now and she will <u>NEVER, EVER</u> have another seizure again. I am so thankful for that. I also believe all the extra time and effort that goes into raising a child with special needs, needs that change your life more than you could ever imagine <b>make it harder</b>.

I know she’s in a much better place <i>in my head</i>, but there’s this hole <i>in my heart </i> that will never be filled back up.
I told the preacher I would have done anything, given anything to make her healthy. I would have freely given my life to make hers healthy. But, we don’t really get to choose that kind of thing, do we? In the same breath I also told him how much I would have hated to give up all that she taught me (and her brother, and her father, and everyone she ever came into contact with who took the time to open their eyes and their hearts to her.) It wasn’t that I was a “bad person” before, just a person who had a totally different perspective on what was important in life, a person who didn’t realize how strong I could be and most likely would have never realized that potential without a little push from my angel.

Jordan helped me more than I ever helped her.

I took all of these pictures of her on the Thursday before. I didn’t get them developed at first, and now I want to see them so bad. I want to see her. I hope and pray there is at least one very special picture in the lot. She was asleep with the new kitten lying on/by the side of her stomach.

I kept her home from school that day because it was getting harder and harder to get her ready, but I also admitted to her that day that I kept my little angel bug home with me just because I enjoyed being with her. I wonder if she had been waiting all these years to hear that from me. That I just accepted her for who she was and I loved her and her precious company. I could never have imagined that in just a few days I wouldn’t have her with me, physically, to steal kisses from, to talk to, and to hug.

It’s amazing the world keeps turning and doesn’t skip a beat when you feel as though it should stop.

You might think we would have been prepared …but whether your child is healthy and ‘normal'(whatever that is :o) or like Jordan and our other angels with health-care issues, I don’t think any of us can ever really be ready. Did you know that you have to call the paramedics so they can check for cardiac activity and pronounce a time of death? It makes sense now, but it made absolutely no sense whatsoever Monday morning. I cannot believe how fast everything goes…and how many decisions you have to make in so short a period of time.

But, you never stop being a mother, even through all the chaos. I don’t even remember a much of it, it’s God’s way of protecting us I suppose.

I do remember that I had to give her a sponge bath and put lotion on her and change her clothes and brush her teeth before the paramedics even got to our home. I did have to put a little bit of lipstick on her, because that was the one thing that bothered me about her appearance. The one thing that made it so real. But the one thing I didn’t have were panties…and there was no way I would ever put a diaper on her again because she would never again need a diaper.

Jordan didn’t have any panties though…I didn’t know what I was going to do because I ‘needed’ to put underwear on her. And then it hit me, Joshua has his boxers, and that made it o.k., actually even more special. We did buy a pair of panties for her to go with the beautiful skirt and top we bought.

I bought Jordan a new bra too…but we didn’t put it on her. I couldn’t think of going through eternity having to wear a bra :o) It’s really crazy the things you think. It’s kind of crazy all the toys I put with her. It’s crazy that some of the jewelry I put on her I knew she could never wear any other way, it’s as though I picked up things for her through out the years, without intention, to put on her when her physical body left us. The music box that I couldn’t let her play with alone… Crazy is a good way to describe everything, including the way I feel now.

The best thing was the music (which Jordan loves so much.) Steve and I take guitar lessons from Rush (who is an aide at Jordan’s School and knows and loves her.) The beginning of the summer he played “Tears in Heaven” for me because he wanted to include the acoustical version of it on his band’s next CD. That was the first thing I knew I wanted for her, for us. His sister Mildred is also an aide at the Burkett Center and was Jordan’s aide for about 2 years. Mildred sang “Amazing Grace” with Rush accompanying her on the guitar. It was so beautiful and was made even more beautiful because they knew and loved Jordan. I do not see how Mildred was able to sing, but she told me she was honored to do it. She was able to hold it together because of her love for us and of Jordan and that is so incredible.

Jordan has blessed us and continues to bless us in so many ways. We have met so many wonderful people. I don’t know that we would have had the opportunity to meet them had it not been for Jordan. I’m trying to hold onto all of these positive things…

Our family is hanging in there, it just seems so unreal and our life feels so weird, especially our immediate family life. That is the only word I can think of to describe it, weird. It as though none of us have a rhythm anymore, we don’t know what to do with ourselves. I say we to include our son Joshua who has never known life without his sis. If everything else didn’t already do it, that is the one thing that totally breaks my heart. I’ve thought to myself, why has he had to go through all of this (and I mean all.) And then I think, no, he is SO BLESSED to have Jordan as his sister for the last 11 years. She will continue to bless him for the rest of his life.

He knows more about life at 11 years of age than I did at 24.

Steve, Donna & Joshua, the family of
Jordan Howard
03-06-90 until 10-13-03

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<img src=”./meetus/images/Jordan-Howard/jordan20.gif”>
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“This was no ordinary LIFE. This was a life well-lived and well loved, a life that will be deeply missed.”

I’m going to include a few pictures of Jordan and our family. Oh, and the lyrics to a beautiful song that I happened upon a few days after Jordan passed away. I believe that it is a universal love song and I’ve sung it to Jordan so often since… Sometimes I cry, other times I just “SMILE.”

<u>SMILE</u>
<table>
<tr><td>Sitting here thinking about the times we shared</td></tr>
<tr><td>The love you gave so freely lets me know you care</td></tr>
<tr><td>In spite of all the things we’ve been through I know it was only a test</td></tr>
<tr><td>And now I wish that you were here with me to cure my loneliness </td></tr>
<tr><td> </td></tr>
<tr><td>I’ll just smile when I think of all the good times</td></tr>
<tr><td>I just smile when I think about all the joy you bring</td></tr>
<tr><td>When I think about how you touched my life</td></tr>
<tr><td>And how you set my spirit free</td></tr>
<tr><td>I just smile when I think about all you’ve done for me</td></tr>
<tr><td> </td></tr>
<tr><td>I never knew before we met what love could do for me</td></tr>
<tr><td>And when we were together I saw how strong I could be</td></tr>
<tr><td>With all the space between us I still feel you are here</td></tr>
<tr><td>And all the love that’s in my heart keeps you near</td></tr>
<tr><td> </td></tr>
<tr><td>I’ll just smile when I think of all the good times</td></tr>
<tr><td>I just smile when I think about all the joy you bring</td></tr>
<tr><td>When I think about how you touched my life</td></tr>
<tr><td>And how you set my spirit free</td></tr>
<tr><td>I just smile when I think about all you’ve done for me</td></tr>
<tr><td> </td></tr>
<tr><td>
“This world is supposed to be about love.” <u>Robert Randolph and the Family Band</u>, “Unclassified”</td></tr></table>

<hr> The most visible creators I know of are those artists whose medium is life itself. The ones who express the unexpressible – without brush, hammer, clay or guitar. They neither paint nor sculpt – their medium is being. Whatever their presence touches has increased life. They see & don’t have to draw. They are the artists of being alive…
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<br>~Jane Stone~</center>
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<h2>coping</h2>
Christmas stockings seem to be one of the hardest things for me and I wasn’t going to put one up for Jordan. I talked to a friend today who lost her brother when we were about 20 and he was 15. They put out his stocking every year, but each of them writes Craig a note and puts it into the stocking. Carla said it helped initially just writing something to him and it still does….but now she is able to look back and see how far she has come.

It was meant for her to call me today, I’m so happy to have a reason to put up Jordan’s stocking and I’m also thinking this will help our family deal with our grief a little bit. It can become sort of a tradition – a memory stocking.
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<a href=”http://www.myspace.com/ibdonna”>Visit Donna on MySpace</a>

1 thought on “Jordan Howard”

  1. Becky Carapia

    Thank you for that beautiful story. I’m a NICU nurse so I’ve seen little ones go too soon. It gives me comfort to know that they, and I’m sure your Jordan and my Juliana will only know love in their short lives. That’s a gift. All mamas want their kids to be healthy and would take on any hurt that would come their way. We didn’t get that but our kids were/are happy. I shouldn’t have read this at work since I’m now a puddle of mush but please know that your story touched my heart and your strength gives me comfort. Thank you

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