Monday, October 6, 2008


When I think of this word the first thing that comes to mind is death. The truth is we grieve so many things in life. When Alex was born I grieved the loss of that moment, the moment when I was supposed to hold him for the first time, quiet his cry. I couldn't even touch him because babies with pulmonary hypertension need to be left alone. I grieve those moments, the newborn moments the gurgles, the kitten cry, the funny faces, the sleeping smiles. I missed all that.

Then I grieved the loss of the typical child, each week a milestone should have been met, and we weren't even out of the hospital. The hopes you have for your typical children, succeeding in school, sports, marriage.

I grieved my freedom, caring for a special needs child takes up all of your time, if you aren't physically doing something, you are planning for the next event of the day. Tube feeds, breathing treatments, therapy, reflux, doctor appointment.

I grieved over the doctors words, "may never speak", "may not look like he belongs in your family", "mental retardation".

This year has been full of grief for me, full of anger, fear. Not so much a "why me God", but "where are you God?" I have had moments of being so consumed by grief, I absolutely could not go on, my heart kept beating though so forward I went. I had moments of feeling so isolated and alone, no one could possibly understand what my hour by hour life involves. They are planning parties, I am inserting an NG tube into my sons nose. They are Christmas shopping I am in the hospital again.

It took a little less than a year, the grief is gone.
I still wonder about the future, but I don't grieve it.
I still look at typical babies, but I don't grieve it.

I love Alex for everything that he is. He hasn't said his first word yet,( at least in English), but he has taught me more than any English speaking teacher I ever had.
In his first year of life he has touched people around the world.

I love you Alex, and my heart is not broken. My heart beats stronger than it ever did.


ANewKindOfPerfect said...

It is an amazing day, when you realize that you have not grieved today. Or for the last week. Or month. And that you are no longer grieving over what "should have been could have been", but rather are celebrating what IS. And the amazingness that IS your beautiful child.

I hope you enjoy your support group meeting. I run a support group here, for parents of special needs children. It is an AWESOME group, and some months it is all that keeps me going!

Connie said...

He sure has touched people around the world. And so have you, by the way, Jessica. Cathy & I email each other sometimes about the things you've posted about. I learn a lot from you (and not just that a broom hanger does really well as a 60cc syringe holder for gravity feedings).

I'm so grateful for Alex and for you.

Cindy said...

Congratulations! Does this mean you've finally arrived in Holland? :)

Great job starting a support group!

Shari said...

I just came across your blog last week sometime. I read and read and kept reading about your baby boy! He is amazing! I went thru something similar when we found out our son had permanent brain damage as an infant. Isn't it just a blessing when we can get to the point of not grieving each day and rejoice in the milestones and happiness of the child? I know it was a huge milestone for me to get to that point. Thank you for sharing. I have learned so much from you!

Laurie said...

Alex sure has touched my life and I want to thank you for sharing him here with us Jessica. I have watched God bring you through the grief this past year into the joy that now beats in your heart. The blessings Alex has for you and all of us has just begun. I hope his first "English" word will be Momma, a reward for all the love you pour into him every moment of every day. I love this little guy big time!!!

Hugs, Laurie in Ca.

mrsrubly said...

aww! your lil alex is just adorable! i will keep praying for your mommy heart. my heart aches that that your family like others, has to go thru these things. PS i love his 1YO pics. so cute. his eyes and smile just tug @ my heart!

Mamapants said...

He is really sweet, I hope that he continues to do well and thrive.

The VW's said...

I can so relate to these words! I have also thought of these feelings as another form of grief. I still have days where I grieve the boy that I planned on having; the boy that I thought would walk and talk. Although I still grieve some days, the grief is just fleeting and I can actually say that I'm a happier and more well rounded person for having the boy that was brought to me!

I pray that Gavin will be able to walk and talk some day, but I know that if he doesn't he and I will be just fine! I wouldn't change having him in my life for anything and feel very blessed to have him just the way he is!

I also feel blessed having the privelege of 'knowing' you and your precious Alex! Thank you!

angie said...

I understand everything that you said. Your writing always inspires me. It is such a journey to get to the point where you are. Our children are amazing miracles, and as a mom we will do whatever it takes. You are doing a fantastic job with Alex. I absolutely LOVE the pictures of him. He is growing up...he looks more like a toddler now than a baby:).

nola said...

What a long way God has brought you in just one year. You have learned so much and now you are sharing with others who need you so desperately. God has given you insight and wisdom and a heart for service to others. Bless you as you continue to reach to so many who need you. Alex is truly been a joy-giving teacher. How blessed you are to have him in your life and in your family. He is a wonder - he is a miracle.

Jeff Goins said...

good thoughts. i love your blog topic, by the way. henri nouwen writes some good things on "grieving the seasons of our lives." for the longest time, i thought that grief was only for wimps. then i realized that you can not enjoy the next season of your life until you've grieved the prior one. thanks for putting it out there.

Rachel said...

Thank you for posting this heartfelt message.

I can relate - and to the feeling of grieving something that you "thought" was supposed to be.

So glad that your kids have brought this strength to you.

Thank you again.

Finding Normal said...

What a beautiful post! Do you look back with regret, wishing you'd enjoyed the early days more? I knew I should have, I knew it at the time, but it was so so hard to get past the pain to the joy.
Thank goodness we're in joy all the time now!