Thursday, June 4, 2009

Keep Climbing

Just when I feel I am getting the hang of life right now, things seem to change. Even if they are subtle changes, it seems that it just throws a rift into everything. Like my whole outlook or focus changes because of a slight detour down the path I thought I was following.

So, last I told you, we had talked to Dr. Connolly. I have been wanting to type about our conversation, but part of what has kept me from it was the hope that I would have better news for you than I do. Everyone wants to help us with "treatment" for Ryan, or make sure we have the latest and not so greatest news on research trials, etc. I am open to and thankful for those who have been brave enough to call or email me with these suggestions. You all must know that your desire to help Ryan is appreciated but there is no desire greater than our own. But, in the event that I don't know, you brave the phone call or email, just to be sure, a difficult thing to do when a situation seems so grim. Dr. Connolly has advised us on many of these subjects and is a highly recommended physician from around the country. I know we are in capable hands and that she, if anyone, will know how to advise us best.

Which brings me to her advice. There truly isn't much we can do. Ryan's case is not like all other type 1 cases because truly, there are no two alike and no standard of treatment for these kids. Because all options stink, there are no good options. The choices we are to make are based on our own values. There is no right or wrong way. Much of the professional literature (i.e. "standards of care for SMA") states this very clearly. The "standard of care" written for SMA is strictly guidlines as this disease is so severe and no clinical trial or data has been able to change the probable outcome that we have already shared with you. Ryan's situation is unique in that he seems to be one of the "sicker" type 1 cases and because he has already been affected so significantly with his respiratory function and he is tiny. Many treatment options such as bi-pap, cough machines, experimental drugs, are not suitable for him and could possibly cause more damage and shorten his life even further.

I had a long talk with Ryan's new pulmonologist at Children's today and we will be seeing him in the hospital tomorrow for him to examine Ryan. I do feel that this physician will play a key role in the remainder of this difficult time for our family and got a good feeling from him that he will be there to support our decisions. I do think he has seen enough children with SMA to advise us confidently. That is what we need, someone who has helped and has experience with the care of SMA type 1 and we will also be leaning on the experiences and knowledge of the Wing's Nurses who are very expereinced with the daily care that works best Ryan. Because there is so much unclear and controversial information about SMA out there, this will be very important for Chris and I and to be sure that Ryan's "team" understands that our priority for him is for his days here to be the best they can be and when they days get difficult and unpleasant for him, that we help him through that and make him as comfortable as we can.

I fear this time so much. I fear that we are headed there sooner than I thought we would be. Ryan has already shown signs that his disease has worsened in the short 3 weeks we have been home. He requires more suctioning, what was once an every few days thing has become multiple times per day. He is more intolerant of positioning, especially in his car seat, which we are going to have to come up with a solution for and is not comforted by holding, unless cradled tummy down, facing outward. He also seems to have more frequent irritable periods, but each day is different and he seems to be physically working harder to breathe.

On a positive note, he does love his bouncy chair and enjoys playing with his toys, and is soothed with a pacifier if I hold it in for him. Another favorite pass time for both children is Charlotte pushing Ryan in his swing. They both are so happy most of the time when doing this activity. I love seeing them interact together.

I just don't like this feeling of suspension that we are in. We have jumped off the cliff, into the unknown. We know there is a bottom and don't know when we will get there, but it is the moments before, when you know you will hit that is frightening. Chris and I pray that Ryan does not feel that feeling. That feeling of fear or anxiety. That he already knows that there is a life so much better than the one he is living right now, in heaven. That God has already had a one-to-one talk with him and that he just knows, there is more to come. But then for us, as parents, we somehow pray that our last days with Ryan are good days, days when we would be completely taken by surprise if Ryan was called home because we had such a great day. We pray that those memories are what remain, not days of uncertainty, anguish for our son's struggle. We pray that he slips away peacefully and that his battle is not long and drawn out. Because what matters most to us that Ryan's quality of life is the best it can be. Quantity is not a concept that has importance anymore. Of course we want him here as long as possible, but our reasoning for wanting those days to be good may seem selfish at first, because it is harder on us when they are bad. But bad days for us are bad days for Ryan and if we are hurting, he is hurting. The two go together.

Daily I pray he feels our love, our committment to his needs, to being there when he hurts and being there when he is ready to smile and play. Oh how I hope he knows our love; that we would climb mountains for him and will climb this mountain with him. We will carry him to the peak to meet The Maker with the strength of Christ beside us. We will graciously pray for his life to be renewed in Heaven and that someday, the little boy that we love so much will greet us and say "Mommy, Daddy, I missed you. But look, I am well".



The Smith Family said...

God Bless you for having the strength to update us all. I wish I had anything else to say. We will continue to pray for Ryan's comfort. I have no doubt that he knows and feels every ounce of love you are all giving him. He will be your guardian angel in Heaven, fully restored and waiting to welcome you.
May God continue to hear your prayers. Much love is sent your way.

Justin, Amber & Nathaniel Smith

Michelle B said...

Jenn - I just wanted to let you know that I truely admire your courage and strength through all this. I am so thankful that you both know our good lord like you do. Ryan will be in his comfort until you guys see eachother again. I pray for some good fun play days for you all. Keep smiling and enjoy each moment......Michelle Begley

Nancy Keller said...

God bless you and Chris for being so strong. Thank you for writing to update everyone. I'm sure that Ryan feels your love and will be watching over you until you can join him in Heaven.

The Emersons said...

I don't know you, but have been following your blog for a while now. I have to tell you that I admire you and Chris! I have a seven month old girl and I could not imagine having the strength and courage that you have! You and your whole family are in my prayers. I know that Ryan must feel your love! I pray that God stays with Ryan and gives him comfort through the rest of his life!

Jennifer and Brian Emerson

Anonymous said...

You and Chris are the stongest people I know.And the best parents. God will never leave you and He will lead you through this. Ryan is a special angel and I pray for you all daily.I know he feels your love . I am always here if you need anything.
Kathy Glascock

Andrea said...

You remain in my prayers constantly.

Anonymous said...

I don't know you but follow your blog. My prayers are with you. I can't imagine having to go thru something like this with my children. I guess you somehow find the strength in what life throws you but no one could prepare you for something like this.

Anonymous said...

Dear Jenn,

We are praying prayers of strength and comfort for you. May God hold your little family so close and give you peace for the anxieties and fears that you face every moment. Ryan is God's precious child, as are you, Chris, and Charlotte. I hope that you can feel His love and His comfort.

God bless you and keep you (Numbers 6:24-26)

Anonymous said...

As always your family is in our prayers daily. You, like Debbie J, have more strength then you know and you both are a constant inspiration to all of us on L&D. Thanks for keeping us updated. I can't imagine what all you're going through, but pray for your strength and love to keep you going. You are wonderful parents and I know Ryan feels your love for him.
God Bless,
Karen Timpe

Anonymous said...

Jenn & Chris - I listened to this today in the car - it seemed to say so much of what I am feeling as your mom and Ryan's grandma. I know you must feel just the same as Ryan's parents. I love you both - Mom

If I Could
Celine Dion/Miracle

If I could
I'd protect you from the sadness in your eyes
Give you courage in a world of compromise
Yes, I would

If I could
I would teach you all the things I've never learned
And I'd help you cross the bridges that I've burned
Yes, I would

If I could
I would try to shield your innocence from time
But the part of life I gave you isn't mine
I've watched you grow
So I could let you go

If I could
I would help you make it through the hungry years
But I know that I can never cry your tears
But I would
If I could

If I live
In a time and place where you don't want to be
You don't have to walk along this road with me
My yesterday
Won't have to be your way

If I knew
I'd have tried to change the world I brought you to
And there isn't very much that I can do
But I would
If I could...
Oh baby... mummy wants to protect you
And help my baby through the hungry years
It's part of me
And if you ever... ever need
Sad shoulder to cry on
I'm just someone to talk to
I'll be there... I'll be there
I didn't change your world
But I would
If I Could!

Ellen said...

You and your family have such an army of prayers behind you wherever you go, and we are all so incredibly proud of you and your strength. I'm blessed to work with Charlotte, your love for your kids radiates through her!

Lindsay F said...

Even though I'm so far away, I feel close to you and what you're going through by reading your blogs. Thank you for faithfully writing to all of us!

I pray regularly that you keep receiving God's strength and wisdom to do what's best for Ryan. Everything you wrote in your last paragraph describes my hopes and desire as Aaron and Natalie's mom, and they aren't sick. I don't want to see them struggle when another kids makes fun of them, but it will happen and we will have to deal with it together. I don't want to see them fall down and hurt themselves but they will and we'll get through it together.

I love you so much and hope you know that!