Re: Zipporrah Klein update

[Guest guest]

So sorry to hear that Zipporrah is not doing so well. I will keep her in my mind, and hopefully she can recover from some of the damage. Have you taken her to the doctor about this? What do they say? I thought there was some type of medication to help reverse some damage due to strokes, if taken soon after the stroke. I don't know if this is possible for her type. Just maybe a thought of hope. Best wishes.

[Guest guest]

So sorry to hear that Zipporrah is not doing so well. I will keep her in my mind, and hopefully she can recover from some of the damage. Have you taken her to the doctor about this? What do they say? I thought there was some type of medication to help reverse some damage due to strokes, if taken soon after the stroke. I don't know if this is possible for her type. Just maybe a thought of hope. Best wishes.

[Guest guest]

So sorry to hear that Zipporrah is not doing so well. I will keep her in my mind, and hopefully she can recover from some of the damage. Have you taken her to the doctor about this? What do they say? I thought there was some type of medication to help reverse some damage due to strokes, if taken soon after the stroke. I don't know if this is possible for her type. Just maybe a thought of hope. Best wishes.

[Guest guest]

Darla:

I am so sorry to hear about Zipporrah. I will keep her in my payers and hope she recovers soon. Keep us updated.

Tina

Mom to AJ (3yrs, Mito/SCAD)

Zipporrah Klein update

Zipporrah (5 months old now) had another small stroke episode with the current virus. On the 20th in the evening she was screaming for several hours (migraine-?) and then through the night had trouble sleeping. I began to notice her suck was very poor and light and noticed her mouth pulling toward the right side. By the next day I noticed decreased movement of her right arm as well. She tends to hold it closer to the body and doesn't like to reach out to toys as well since then. It isn't near as bad as the left-sided stroke episode was thankfully. She is displaying the same typical pattern Asenath has with the virus and screaming episode, followed by symptoms consistent with strokes. She is still battling the virus with wheezing and ! coughing and lower pulse-ox reading. We are trying to stay on top of the virus with neb treatments and steam shower treatments but is has been frustrating to see another stroke episode at such a young age. She has been having feeding problems while lying on her right side due to the cheek muscle weakness and NOW she is preferring that side to her right side because of the newest stroke episode hitting the right side. It has definitely been another wake-up call to see yet another stroke episode with the very next virus. I guess I am wondering if every virus will do the same thing. I am worried about tomorrow rather than today because I see Asenath falling farther and farther behind as she gets older. (I know, don't worry about tomorrow as today has enough problems of its own-Bible principle) I am trying to keep a positive outlook, but boy is it hard! Guess I just wanted to let you all know...

! & nbs p;

Darla: mommy to Asenath, Zipporrah, and the gang

Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

Please contact mito-owner with any problems or questions.

Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

[Guest guest]

Darla:

I am so sorry to hear about Zipporrah. I will keep her in my payers and hope she recovers soon. Keep us updated.

Tina

Mom to AJ (3yrs, Mito/SCAD)

Zipporrah Klein update

Zipporrah (5 months old now) had another small stroke episode with the current virus. On the 20th in the evening she was screaming for several hours (migraine-?) and then through the night had trouble sleeping. I began to notice her suck was very poor and light and noticed her mouth pulling toward the right side. By the next day I noticed decreased movement of her right arm as well. She tends to hold it closer to the body and doesn't like to reach out to toys as well since then. It isn't near as bad as the left-sided stroke episode was thankfully. She is displaying the same typical pattern Asenath has with the virus and screaming episode, followed by symptoms consistent with strokes. She is still battling the virus with wheezing and ! coughing and lower pulse-ox reading. We are trying to stay on top of the virus with neb treatments and steam shower treatments but is has been frustrating to see another stroke episode at such a young age. She has been having feeding problems while lying on her right side due to the cheek muscle weakness and NOW she is preferring that side to her right side because of the newest stroke episode hitting the right side. It has definitely been another wake-up call to see yet another stroke episode with the very next virus. I guess I am wondering if every virus will do the same thing. I am worried about tomorrow rather than today because I see Asenath falling farther and farther behind as she gets older. (I know, don't worry about tomorrow as today has enough problems of its own-Bible principle) I am trying to keep a positive outlook, but boy is it hard! Guess I just wanted to let you all know...

! & nbs p;

Darla: mommy to Asenath, Zipporrah, and the gang

Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

Please contact mito-owner with any problems or questions.

Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

[Guest guest]

Dear Darla,

I am very sorry to hear the news about Zipporrah. I will pray for you

for the fear about next time she has a virus, as I can relate with that

one all so well, and will be praying for Zipporrah that she will have a

quick return & recovery and that she won't have another stroke episode.

Shirley mom to and Jordan

>  

>  

>

>      Zipporrah (5 months old now) had another small stroke episode with

> the current virus.  On the 20th in the evening she was screaming for

> several hours (migraine-?) and then through the night had trouble

> sleeping.  I began to notice her suck was very poor and light and

> noticed her mouth pulling toward the right side.  By the next day I

> noticed decreased movement of her right arm as well.  She tends to hold

> it closer to the body and doesn't like to reach out to toys as well

> since then.  It isn't near as bad as the left-sided stroke episode was

> thankfully.  She is displaying the same typical pattern Asenath has

> with the virus and screaming episode, followed by symptoms consistent

> with strokes.  She is still battling the virus with wheezing and

> coughing and lower pulse-ox reading.  We are trying to stay on top of

> the virus with neb treatments and steam shower treatments but is has

> been frustrating to see another stroke episode at such a young age. 

> She has been having feeding problems while lying on her right side due

> to the cheek muscle weakness and NOW she is preferring that side to her

> right side because of the newest stroke episode hitting the right

> side.  It has definitely been another wake-up call to see yet another

> stroke episode with the very next virus.  I guess I am wondering if

> every virus will do the same thing.  I am worried about tomorrow rather

> than today because I see Asenath falling farther and farther behind as

> she gets older.  (I know, don't worry about tomorrow as today has

> enough problems of its own-Bible principle)  I am trying to keep a

> positive outlook, but boy is it hard!  Guess I just wanted to let you

> all know...

>                                                 

> Darla: mommy to Asenath, Zipporrah, and the gang

>

>

>

> Get more from the Web. FREE MSN Explorer download :

> http://explorer.msn.com

>

>

>

>

>

> Please contact mito-owner with any problems or

> questions.

>

>

>

>

[Guest guest]

Dear Darla,

I am very sorry to hear the news about Zipporrah. I will pray for you

for the fear about next time she has a virus, as I can relate with that

one all so well, and will be praying for Zipporrah that she will have a

quick return & recovery and that she won't have another stroke episode.

Shirley mom to and Jordan

>  

>  

>

>      Zipporrah (5 months old now) had another small stroke episode with

> the current virus.  On the 20th in the evening she was screaming for

> several hours (migraine-?) and then through the night had trouble

> sleeping.  I began to notice her suck was very poor and light and

> noticed her mouth pulling toward the right side.  By the next day I

> noticed decreased movement of her right arm as well.  She tends to hold

> it closer to the body and doesn't like to reach out to toys as well

> since then.  It isn't near as bad as the left-sided stroke episode was

> thankfully.  She is displaying the same typical pattern Asenath has

> with the virus and screaming episode, followed by symptoms consistent

> with strokes.  She is still battling the virus with wheezing and

> coughing and lower pulse-ox reading.  We are trying to stay on top of

> the virus with neb treatments and steam shower treatments but is has

> been frustrating to see another stroke episode at such a young age. 

> She has been having feeding problems while lying on her right side due

> to the cheek muscle weakness and NOW she is preferring that side to her

> right side because of the newest stroke episode hitting the right

> side.  It has definitely been another wake-up call to see yet another

> stroke episode with the very next virus.  I guess I am wondering if

> every virus will do the same thing.  I am worried about tomorrow rather

> than today because I see Asenath falling farther and farther behind as

> she gets older.  (I know, don't worry about tomorrow as today has

> enough problems of its own-Bible principle)  I am trying to keep a

> positive outlook, but boy is it hard!  Guess I just wanted to let you

> all know...

>                                                 

> Darla: mommy to Asenath, Zipporrah, and the gang

>

>

>

> Get more from the Web. FREE MSN Explorer download :

> http://explorer.msn.com

>

>

>

>

>

> Please contact mito-owner with any problems or

> questions.

>

>

>

>

[Guest guest]

Darla,

Sorry to hear about sweet little Zipporah. I'm praying for a quick recovery and no more set-backs.

Kim - Mom to and Lindsey (2) Partial Complex I

Zipporrah Klein update

Zipporrah (5 months old now) had another small stroke episode with the current virus. On the 20th in the evening she was screaming for several hours (migraine-?) and then through the night had trouble sleeping. I began to notice her suck was very poor and light and noticed her mouth pulling toward the right side. By the next day I noticed decreased movement of her right arm as well. She tends to hold it closer to the body and doesn't like to reach out to toys as well since then. It isn't near as bad as the left-sided stroke episode was thankfully. She is displaying the same typical pattern Asenath has with the virus and screaming episode, followed by symptoms consistent with strokes. She is still battling the virus with wheezing and ! coughing and lower pulse-ox reading. We are trying to stay on top of the virus with neb treatments and steam shower treatments but is has been frustrating to see another stroke episode at such a young age. She has been having feeding problems while lying on her right side due to the cheek muscle weakness and NOW she is preferring that side to her right side because of the newest stroke episode hitting the right side. It has definitely been another wake-up call to see yet another stroke episode with the very next virus. I guess I am wondering if every virus will do the same thing. I am worried about tomorrow rather than today because I see Asenath falling farther and farther behind as she gets older. (I know, don't worry about tomorrow as today has enough problems of its own-Bible principle) I am trying to keep a positive outlook, but boy is it hard! Guess I just wanted to let you all know...

! & nbs p;

Darla: mommy to Asenath, Zipporrah, and the gang

Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

Please contact mito-owner with any problems or questions.

Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

[Guest guest]

Darla,

Sorry to hear about sweet little Zipporah. I'm praying for a quick recovery and no more set-backs.

Kim - Mom to and Lindsey (2) Partial Complex I

Zipporrah Klein update

Zipporrah (5 months old now) had another small stroke episode with the current virus. On the 20th in the evening she was screaming for several hours (migraine-?) and then through the night had trouble sleeping. I began to notice her suck was very poor and light and noticed her mouth pulling toward the right side. By the next day I noticed decreased movement of her right arm as well. She tends to hold it closer to the body and doesn't like to reach out to toys as well since then. It isn't near as bad as the left-sided stroke episode was thankfully. She is displaying the same typical pattern Asenath has with the virus and screaming episode, followed by symptoms consistent with strokes. She is still battling the virus with wheezing and ! coughing and lower pulse-ox reading. We are trying to stay on top of the virus with neb treatments and steam shower treatments but is has been frustrating to see another stroke episode at such a young age. She has been having feeding problems while lying on her right side due to the cheek muscle weakness and NOW she is preferring that side to her right side because of the newest stroke episode hitting the right side. It has definitely been another wake-up call to see yet another stroke episode with the very next virus. I guess I am wondering if every virus will do the same thing. I am worried about tomorrow rather than today because I see Asenath falling farther and farther behind as she gets older. (I know, don't worry about tomorrow as today has enough problems of its own-Bible principle) I am trying to keep a positive outlook, but boy is it hard! Guess I just wanted to let you all know...

! & nbs p;

Darla: mommy to Asenath, Zipporrah, and the gang

Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

Please contact mito-owner with any problems or questions.

Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

[Guest guest]

Darla,

Sorry to hear about sweet little Zipporah. I'm praying for a quick recovery and no more set-backs.

Kim - Mom to and Lindsey (2) Partial Complex I

Zipporrah Klein update

Zipporrah (5 months old now) had another small stroke episode with the current virus. On the 20th in the evening she was screaming for several hours (migraine-?) and then through the night had trouble sleeping. I began to notice her suck was very poor and light and noticed her mouth pulling toward the right side. By the next day I noticed decreased movement of her right arm as well. She tends to hold it closer to the body and doesn't like to reach out to toys as well since then. It isn't near as bad as the left-sided stroke episode was thankfully. She is displaying the same typical pattern Asenath has with the virus and screaming episode, followed by symptoms consistent with strokes. She is still battling the virus with wheezing and ! coughing and lower pulse-ox reading. We are trying to stay on top of the virus with neb treatments and steam shower treatments but is has been frustrating to see another stroke episode at such a young age. She has been having feeding problems while lying on her right side due to the cheek muscle weakness and NOW she is preferring that side to her right side because of the newest stroke episode hitting the right side. It has definitely been another wake-up call to see yet another stroke episode with the very next virus. I guess I am wondering if every virus will do the same thing. I am worried about tomorrow rather than today because I see Asenath falling farther and farther behind as she gets older. (I know, don't worry about tomorrow as today has enough problems of its own-Bible principle) I am trying to keep a positive outlook, but boy is it hard! Guess I just wanted to let you all know...

! & nbs p;

Darla: mommy to Asenath, Zipporrah, and the gang

Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

Please contact mito-owner with any problems or questions.

Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

[Guest guest]

Darla, as always you and the girls are in my thoughts and prayers!!! Please keep us posted on how sweet Zipporrah is.

All my love, thoughts and prayers,

Wayne and BlockMommy and Daddy of ~Gentry Hope~ Healthy & ~Aspyn Remar~ Unknown Mitochondrial Disease, Lactic Acidosis, and CardiomyopothyNovember 14, 2001 to July 15, 2002Please visit Aspyn at www.aspynblock.com or http://www.amandabowden.pwp.blueyonder.co.uk/aspyn.htm

Zipporrah Klein update

Zipporrah (5 months old now) had another small stroke episode with the current virus. On the 20th in the evening she was screaming for several hours (migraine-?) and then through the night had trouble sleeping. I began to notice her suck was very poor and light and noticed her mouth pulling toward the right side. By the next day I noticed decreased movement of her right arm as well. She tends to hold it closer to the body and doesn't like to reach out to toys as well since then. It isn't near as bad as the left-sided stroke episode was thankfully. She is displaying the same typical pattern Asenath has with the virus and screaming episode, followed by symptoms consistent with strokes. She is still battling the virus with wheezing and coughing and lower pulse-ox reading. We are trying to stay on top of the virus with neb treatments and steam shower treatments but is has been frustrating to see another stroke episode at such a young age. She has been having feeding problems while lying on her right side due to the cheek muscle weakness and NOW she is preferring that side to her right side because of the newest stroke episode hitting the right side. It has definitely been another wake-up call to see yet another stroke episode with the very next virus. I guess I am wondering if every virus will do the same thing. I am worried about tomorrow rather than today because I see Asenath falling farther and farther behind as she gets older. (I know, don't worry about tomorrow as today has enough problems of its own-Bible principle) I am trying to keep a positive outlook, but boy is it hard! Guess I just wanted to let you all know...

Darla: mommy to Asenath, Zipporrah, and the gang

Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

Please contact mito-owner with any problems or questions.

Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

[Guest guest]

Darla, as always you and the girls are in my thoughts and prayers!!! Please keep us posted on how sweet Zipporrah is.

All my love, thoughts and prayers,

Wayne and BlockMommy and Daddy of ~Gentry Hope~ Healthy & ~Aspyn Remar~ Unknown Mitochondrial Disease, Lactic Acidosis, and CardiomyopothyNovember 14, 2001 to July 15, 2002Please visit Aspyn at www.aspynblock.com or http://www.amandabowden.pwp.blueyonder.co.uk/aspyn.htm

Zipporrah Klein update

Zipporrah (5 months old now) had another small stroke episode with the current virus. On the 20th in the evening she was screaming for several hours (migraine-?) and then through the night had trouble sleeping. I began to notice her suck was very poor and light and noticed her mouth pulling toward the right side. By the next day I noticed decreased movement of her right arm as well. She tends to hold it closer to the body and doesn't like to reach out to toys as well since then. It isn't near as bad as the left-sided stroke episode was thankfully. She is displaying the same typical pattern Asenath has with the virus and screaming episode, followed by symptoms consistent with strokes. She is still battling the virus with wheezing and coughing and lower pulse-ox reading. We are trying to stay on top of the virus with neb treatments and steam shower treatments but is has been frustrating to see another stroke episode at such a young age. She has been having feeding problems while lying on her right side due to the cheek muscle weakness and NOW she is preferring that side to her right side because of the newest stroke episode hitting the right side. It has definitely been another wake-up call to see yet another stroke episode with the very next virus. I guess I am wondering if every virus will do the same thing. I am worried about tomorrow rather than today because I see Asenath falling farther and farther behind as she gets older. (I know, don't worry about tomorrow as today has enough problems of its own-Bible principle) I am trying to keep a positive outlook, but boy is it hard! Guess I just wanted to let you all know...

Darla: mommy to Asenath, Zipporrah, and the gang

Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

Please contact mito-owner with any problems or questions.

Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

[Guest guest]

Darla, as always you and the girls are in my thoughts and prayers!!! Please keep us posted on how sweet Zipporrah is.

All my love, thoughts and prayers,

Wayne and BlockMommy and Daddy of ~Gentry Hope~ Healthy & ~Aspyn Remar~ Unknown Mitochondrial Disease, Lactic Acidosis, and CardiomyopothyNovember 14, 2001 to July 15, 2002Please visit Aspyn at www.aspynblock.com or http://www.amandabowden.pwp.blueyonder.co.uk/aspyn.htm

Zipporrah Klein update

Zipporrah (5 months old now) had another small stroke episode with the current virus. On the 20th in the evening she was screaming for several hours (migraine-?) and then through the night had trouble sleeping. I began to notice her suck was very poor and light and noticed her mouth pulling toward the right side. By the next day I noticed decreased movement of her right arm as well. She tends to hold it closer to the body and doesn't like to reach out to toys as well since then. It isn't near as bad as the left-sided stroke episode was thankfully. She is displaying the same typical pattern Asenath has with the virus and screaming episode, followed by symptoms consistent with strokes. She is still battling the virus with wheezing and coughing and lower pulse-ox reading. We are trying to stay on top of the virus with neb treatments and steam shower treatments but is has been frustrating to see another stroke episode at such a young age. She has been having feeding problems while lying on her right side due to the cheek muscle weakness and NOW she is preferring that side to her right side because of the newest stroke episode hitting the right side. It has definitely been another wake-up call to see yet another stroke episode with the very next virus. I guess I am wondering if every virus will do the same thing. I am worried about tomorrow rather than today because I see Asenath falling farther and farther behind as she gets older. (I know, don't worry about tomorrow as today has enough problems of its own-Bible principle) I am trying to keep a positive outlook, but boy is it hard! Guess I just wanted to let you all know...

Darla: mommy to Asenath, Zipporrah, and the gang

Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

Please contact mito-owner with any problems or questions.

Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

[Guest guest]

Darla, I am so sory to hear of Zipporah's recent SLE, I will surely keep her and the rest of you in my prayers! Hopefully, now that the worst of cold/flu season is over, you all will get a break from illnesses!

On another note, I was doing some oral stim with Chelsesa yesterday, and was watching how she responded. She has always shown weaker tone in her left side, and it is also apparent in her face. When I put the brush in her rt cheeck and press out, she will pull her lip in, as she is supposed to, but I am seeing no resonse on the left side. She will move her tongue to either side, but does not cup the brush very well. The funny thing is, she has ptosis and it is her rt eye that is always droopier!

If you would like, I could take some pics of some of her OS techniques I do with her. They do seem to help, especially now that she is being weaned off phenobarb and I have been hearing her swallow more (she has also been coughing and gagging on her secretions more). Also, dipping the brushes in icy water or keeping them in the freezer has more of a stimulating effect, I believe her therapists called it Thermal Oral Stim. Frozen teethers would be just as good as well.HTH

Hang in there!

[Guest guest]

Darla, I am so sory to hear of Zipporah's recent SLE, I will surely keep her and the rest of you in my prayers! Hopefully, now that the worst of cold/flu season is over, you all will get a break from illnesses!

On another note, I was doing some oral stim with Chelsesa yesterday, and was watching how she responded. She has always shown weaker tone in her left side, and it is also apparent in her face. When I put the brush in her rt cheeck and press out, she will pull her lip in, as she is supposed to, but I am seeing no resonse on the left side. She will move her tongue to either side, but does not cup the brush very well. The funny thing is, she has ptosis and it is her rt eye that is always droopier!

If you would like, I could take some pics of some of her OS techniques I do with her. They do seem to help, especially now that she is being weaned off phenobarb and I have been hearing her swallow more (she has also been coughing and gagging on her secretions more). Also, dipping the brushes in icy water or keeping them in the freezer has more of a stimulating effect, I believe her therapists called it Thermal Oral Stim. Frozen teethers would be just as good as well.HTH

Hang in there!

[Guest guest]

Darla, I am so sory to hear of Zipporah's recent SLE, I will surely keep her and the rest of you in my prayers! Hopefully, now that the worst of cold/flu season is over, you all will get a break from illnesses!

On another note, I was doing some oral stim with Chelsesa yesterday, and was watching how she responded. She has always shown weaker tone in her left side, and it is also apparent in her face. When I put the brush in her rt cheeck and press out, she will pull her lip in, as she is supposed to, but I am seeing no resonse on the left side. She will move her tongue to either side, but does not cup the brush very well. The funny thing is, she has ptosis and it is her rt eye that is always droopier!

If you would like, I could take some pics of some of her OS techniques I do with her. They do seem to help, especially now that she is being weaned off phenobarb and I have been hearing her swallow more (she has also been coughing and gagging on her secretions more). Also, dipping the brushes in icy water or keeping them in the freezer has more of a stimulating effect, I believe her therapists called it Thermal Oral Stim. Frozen teethers would be just as good as well.HTH

Hang in there!

[Guest guest]

Darla-

I am worried about tomorrow rather than today because I see Asenath falling farther and farther behind as she gets older. (I know, don't worry about tomorrow as today has enough problems of its own-Bible principle) I am trying to keep a positive outlook, but boy is it hard.

``````````````````````````````````````````````````````````````````````````````````

It is very hard to not worry. Our children represent tomorrow, the future. When your child's future is so unknown .... it is a very difficult task to remain positive.

I remember rubber banding in my emotions from moment to moment almost. Feeling over whelmed with the despair and fear for what setbacks loomed out there, and the panicked feelings triggered by a fever. Other times I could be filled with such joy that I had my sweet Lily in my life with my arms wrapped around her, breathing her in. That ping ponging of emotions is exhausting in itself.

Some of that fear/worry of the future was based simply on the grief I had for her loss of her future. The "regular" future. The full potential future. I though that because her future was different than the other kids that it was "less positive-less full".

Now with reflection I can see how wrong I was. Maybe Lily's future here as an earthly being was short but it certainly was not "less positive". She lived to her full potential and pushed us as a family to also do the same.

Your spirtual faith is the best life boat there is. I found as I was tested repeatedly and especially in those dark days after she had died, that I thought I was in a little dingy but with each crashing way of fear and despair my raft grew and grew. My trust in God is absolute-WOW! that's some gift from a child with a "less full" potential.

Oh this always happens when I write to you-I have one thing in mind when I start writing and something else comes out. Sorry! What I wanted to say is "YES" it is difficult. Allow yourself to grieve for the "different" future that Asenath and Porrah hold. And then accept their many gifts that come with that different future. There are many-seek them....and give thanks.

Blessings to you,

[Guest guest]

Darla-

I am worried about tomorrow rather than today because I see Asenath falling farther and farther behind as she gets older. (I know, don't worry about tomorrow as today has enough problems of its own-Bible principle) I am trying to keep a positive outlook, but boy is it hard.

``````````````````````````````````````````````````````````````````````````````````

It is very hard to not worry. Our children represent tomorrow, the future. When your child's future is so unknown .... it is a very difficult task to remain positive.

I remember rubber banding in my emotions from moment to moment almost. Feeling over whelmed with the despair and fear for what setbacks loomed out there, and the panicked feelings triggered by a fever. Other times I could be filled with such joy that I had my sweet Lily in my life with my arms wrapped around her, breathing her in. That ping ponging of emotions is exhausting in itself.

Some of that fear/worry of the future was based simply on the grief I had for her loss of her future. The "regular" future. The full potential future. I though that because her future was different than the other kids that it was "less positive-less full".

Now with reflection I can see how wrong I was. Maybe Lily's future here as an earthly being was short but it certainly was not "less positive". She lived to her full potential and pushed us as a family to also do the same.

Your spirtual faith is the best life boat there is. I found as I was tested repeatedly and especially in those dark days after she had died, that I thought I was in a little dingy but with each crashing way of fear and despair my raft grew and grew. My trust in God is absolute-WOW! that's some gift from a child with a "less full" potential.

Oh this always happens when I write to you-I have one thing in mind when I start writing and something else comes out. Sorry! What I wanted to say is "YES" it is difficult. Allow yourself to grieve for the "different" future that Asenath and Porrah hold. And then accept their many gifts that come with that different future. There are many-seek them....and give thanks.

Blessings to you,

[Guest guest]

Darla-

I am worried about tomorrow rather than today because I see Asenath falling farther and farther behind as she gets older. (I know, don't worry about tomorrow as today has enough problems of its own-Bible principle) I am trying to keep a positive outlook, but boy is it hard.

``````````````````````````````````````````````````````````````````````````````````

It is very hard to not worry. Our children represent tomorrow, the future. When your child's future is so unknown .... it is a very difficult task to remain positive.

I remember rubber banding in my emotions from moment to moment almost. Feeling over whelmed with the despair and fear for what setbacks loomed out there, and the panicked feelings triggered by a fever. Other times I could be filled with such joy that I had my sweet Lily in my life with my arms wrapped around her, breathing her in. That ping ponging of emotions is exhausting in itself.

Some of that fear/worry of the future was based simply on the grief I had for her loss of her future. The "regular" future. The full potential future. I though that because her future was different than the other kids that it was "less positive-less full".

Now with reflection I can see how wrong I was. Maybe Lily's future here as an earthly being was short but it certainly was not "less positive". She lived to her full potential and pushed us as a family to also do the same.

Your spirtual faith is the best life boat there is. I found as I was tested repeatedly and especially in those dark days after she had died, that I thought I was in a little dingy but with each crashing way of fear and despair my raft grew and grew. My trust in God is absolute-WOW! that's some gift from a child with a "less full" potential.

Oh this always happens when I write to you-I have one thing in mind when I start writing and something else comes out. Sorry! What I wanted to say is "YES" it is difficult. Allow yourself to grieve for the "different" future that Asenath and Porrah hold. And then accept their many gifts that come with that different future. There are many-seek them....and give thanks.

Blessings to you,