Children visiting after Ali was born
February 2009
Last picture with all the children together before Ali died
Christmas 2010
Pool children today
February 2014
Birthday Cake today
Sunday, February 9, 2014
Celebrating and remembering Ali on her 5th Birthday...
Saturday, February 8, 2014
Memories of Ali
Thursday, January 30, 2014
Alegria Elizabeth - 2/9/09-5/18/11
I had written this post close to a year ago now, but continued to put off posting it as it is just too hard. I thought I was ready to finish Ali's blog and this was to be my good-bye and final post.
I thought that I could say that although we shall never forget our precious Ali, this chapter in our lives has come to an end. I intended to leave the blog open here for both my own memories and for any one who it might benefit from it in the future, but that I would be done writing here and instead take up writing again on my other blog But Joy Cometh.
But I am still not quite ready for all that.
Instead I decided to post this more as a summary of all that happened over the last five years. A summary for both new friends and old...
~~~~~
I would like to thank all of you who have supported us, prayed for us, rejoiced with us, and mourned with us throughout this journey. Thank you all for taking the time to care and to read this blog. It has always been a tremendous encouragement to me.
This blog has been basically my journal of the life of our precious Alegria. I spent 3 years with her here on this earth (the nine months I carried her in my womb plus the 27 months we carried her in our arms).
This is her story. This is also the story of how God used her to teach me so much during that brief time with her. And in closing, I would like to quickly recap the life of our sweet Alibaby.
We had no idea there were any genetic issues when Alegria was born. As I had not had an ultrasound, it was a complete shock that Ali was born with a cleft lip and palate. Within a few days we learned that she also was born with congenital heart defects (Bicuspid pulmonary valve, PDA, and PFO). She also developed temporary but severe Pulmonary Hypertension. She spent her first 10 days in the hospital having been transferred to the NICU at Ft. Wayne Lutheran. Eventually we were discharged with very little knowledge of what the next 27 months would hold. She had low muscle tone and she was unable to eat much by mouth. She was fed via a tube her entire life (first a ng-tube and later via a g-tube).
By the time she was 3 months old, she had had 2 major apnea episodes. Both requiring CPR. It was diagnosed that Ali was born with a genetic condition called Trisomy 13. Thankfully by the time she was diagnosed with T13, she had already lived past most of the terrible medical statistics.
By her first birthday, things seemed to settle down significantly. When she got sick, she got very sick. But when she was healthy, she was so full of energy and life. She was such a delightful and joyful little girl. Her huge smile literally lit up the entire room.
We spent 27 months with Ali enjoying every minute. She was such a blessing to our family! And she is certainly missed.
The Lord giveth and the Lord taketh away. Blessed be the name of the Lord.
Saturday, August 17, 2013
Working through illogical fears and suppressed grief...
From splinters and bloody cuts on the forehead to concussions and smashed toes, with 10 children we have seen a lot of various injuries. From an outsiders perspective, I handle most medical emergencies with calm confidence. I can understand and communicate in the medical jargon. I love medicine. I always have. From the time I was in 2nd grade I KNEW I wanted to be a doctor when I grew up (although God had different plans for that passion). I would go to library and check out medical texts at 9 years old and come home and ask my mom to give me a list of symptoms to research. But I know (and my husband too) that underneath that calm facade and genuine love for medicine, there is far more turmoil there now than there ever was before. That struggles leads back to Ali and my grief.
I honestly do not blame myself for Ali's death. I know there was nothing else that *I* could have done to save her. I genuinely trust God's perfect plan for her life and mine, but occasionally I do still consciously wonder "What If?" I just didn't realize how much those thoughts really still affected me though until after Amarissa's birth. This new little rainbow has brought a lot of subconscious, possibly suppressed emotions to the forefront which I still need to work through.
It was just a cough... But it was likely that same infection which started with just a cough which eventually attacked Ali's heart. What if she had seen a doctor sooner? Was it strep? What if they had prescribed antibiotics? Maybe it wouldn't have attacked her heart? Maybe a doctor would have been able to prevent what I could not have.
My father's side of the family is extremely logical and analytic. It has always been one of the defining characteristics in my family, myself included, but this grief completely clouds my mind. When dealing with sickness or injury in my children it is like I see a flow chart of symptoms, diagnoses, and outcomes in my mind's eye, now instead of working through the scenarios logically I often jump straight to worse case scenario... death, and it paralyzes me. And then I can no longer get past my emotions to be able to look logically at the situation. I no longer have confidence in my knowledge or ability to assess my children's medical needs. And I am afraid that if I make one mistake it could cost me everything especially because I know how fragile life is and how quickly everything can change. I know how very painful it is to bury a child; I have done that twice and I hope to NEVER face that pain again. I am petrified of death.
Amarissa developed transient tachypnea (intermittently rapid breathing) about 24 hours after she was born. Another of our daughters (Annabelle) did the same thing 8 years ago. 8 years ago was BEFORE Ali. Back then, when my midwife told me it was not something to worry about and Annabelle would grow out of it in a few days, I accepted that and wasn't concerned. Amarissa on the other hand was an entirely different story. I watched her like a hawk. I got out Ali's apnea monitor just to calm my fears and let me rest, but it only made it worse when her oxygen levels started dropping into the 80s. My midwife had me bring Amarissa in to her office on Saturday because I was so concerned. She asked me one very poignant question... If Amarissa had done this BEFORE Ali would I be concerned??? The honest answer was NO. If this was before Ali, I would trust my midwife and doctor's instincts. Now instead my mind was racing with unknowns and what ifs. This realization was such an eye opener for me. It helped me recognize the underlying issues but I still have yet to completely work through them. Even though, the transient tachypnea passed weeks ago, I still find myself occasionally checking on her breathing while she is sleeping... just like I did with Ali.
Two weeks ago, we had another medical crises. Another of our daughters (Anica) injured the back of her throat with her older sister's crochet hook (how she managed to do that is a whole other story)... I talked with the doctor and he thought she would be fine since she was breathing, talking, and swallowing normally. So I watched her over the weekend and honestly I worried about the unknowns. And again that worry clouded my mind. By Sunday evening, she had new symptoms: a cough and foul breath but no fever. I couldn't think though. Finally on Monday morning, I decided to make a doctor's appointment as soon as they opened. While I waited, the fog of worry lifted and I decided to research what the problem was. It was so obvious once I calmed down. She had a swollen tonsil, foul breath, and a stiff neck... her tonsil was infected. The doctor's appointment later that day confirmed the infection and she was prescribed an antibiotic. And the overwhelming worry confirmed that I still had not dealt with my underlying fears.
What I finally realized then was that I do not need to have all the answers or medical knowledge because I know the One who does. He IS sufficient. And when I am weak He promises that He is strong. I merely need to trust Him and continue trusting Him who works all things for my good and His glory. Why do I always seem to so often take my eyes off him?
I honestly do not blame myself for Ali's death. I know there was nothing else that *I* could have done to save her. I genuinely trust God's perfect plan for her life and mine, but occasionally I do still consciously wonder "What If?" I just didn't realize how much those thoughts really still affected me though until after Amarissa's birth. This new little rainbow has brought a lot of subconscious, possibly suppressed emotions to the forefront which I still need to work through.
It was just a cough... But it was likely that same infection which started with just a cough which eventually attacked Ali's heart. What if she had seen a doctor sooner? Was it strep? What if they had prescribed antibiotics? Maybe it wouldn't have attacked her heart? Maybe a doctor would have been able to prevent what I could not have.
My father's side of the family is extremely logical and analytic. It has always been one of the defining characteristics in my family, myself included, but this grief completely clouds my mind. When dealing with sickness or injury in my children it is like I see a flow chart of symptoms, diagnoses, and outcomes in my mind's eye, now instead of working through the scenarios logically I often jump straight to worse case scenario... death, and it paralyzes me. And then I can no longer get past my emotions to be able to look logically at the situation. I no longer have confidence in my knowledge or ability to assess my children's medical needs. And I am afraid that if I make one mistake it could cost me everything especially because I know how fragile life is and how quickly everything can change. I know how very painful it is to bury a child; I have done that twice and I hope to NEVER face that pain again. I am petrified of death.
Amarissa developed transient tachypnea (intermittently rapid breathing) about 24 hours after she was born. Another of our daughters (Annabelle) did the same thing 8 years ago. 8 years ago was BEFORE Ali. Back then, when my midwife told me it was not something to worry about and Annabelle would grow out of it in a few days, I accepted that and wasn't concerned. Amarissa on the other hand was an entirely different story. I watched her like a hawk. I got out Ali's apnea monitor just to calm my fears and let me rest, but it only made it worse when her oxygen levels started dropping into the 80s. My midwife had me bring Amarissa in to her office on Saturday because I was so concerned. She asked me one very poignant question... If Amarissa had done this BEFORE Ali would I be concerned??? The honest answer was NO. If this was before Ali, I would trust my midwife and doctor's instincts. Now instead my mind was racing with unknowns and what ifs. This realization was such an eye opener for me. It helped me recognize the underlying issues but I still have yet to completely work through them. Even though, the transient tachypnea passed weeks ago, I still find myself occasionally checking on her breathing while she is sleeping... just like I did with Ali.
Two weeks ago, we had another medical crises. Another of our daughters (Anica) injured the back of her throat with her older sister's crochet hook (how she managed to do that is a whole other story)... I talked with the doctor and he thought she would be fine since she was breathing, talking, and swallowing normally. So I watched her over the weekend and honestly I worried about the unknowns. And again that worry clouded my mind. By Sunday evening, she had new symptoms: a cough and foul breath but no fever. I couldn't think though. Finally on Monday morning, I decided to make a doctor's appointment as soon as they opened. While I waited, the fog of worry lifted and I decided to research what the problem was. It was so obvious once I calmed down. She had a swollen tonsil, foul breath, and a stiff neck... her tonsil was infected. The doctor's appointment later that day confirmed the infection and she was prescribed an antibiotic. And the overwhelming worry confirmed that I still had not dealt with my underlying fears.
What I finally realized then was that I do not need to have all the answers or medical knowledge because I know the One who does. He IS sufficient. And when I am weak He promises that He is strong. I merely need to trust Him and continue trusting Him who works all things for my good and His glory. Why do I always seem to so often take my eyes off him?
Monday, August 12, 2013
Rainbows
In the culture of grieving parents, the first baby born after the death of their sibling is typically called a rainbow baby. I think it is called this because with its arrival this new child brings with it such beauty and joy and hope and promise after the dark storm of grief.
In many ways Ariel was a rainbow baby to us. She wasn't born after Ali died but she was only 5 months old when Ali died. She brought such joy and hope and healing to this entire family amidst our grief. I also thought I had worked through the grief of losing Ali and was for the most part beyond it, and so I didn't anticipate all of the emotions tied to Alegria when this newest little rainbow arrived.
I did have a lot of fears surrounding this upcoming birth but I hadn't consciously acknowledged them all. Our last home birth with Ariel 2 1/2 years ago was one of my hardest recoveries because I had lost so much blood during delivery. I was scared what if this happened again...
And then 5 short months later, we buried Ali. And we grieved hard.
10 months after burying Ali we found out we were expecting again, and we were so excited... only to miscarry this child whom we named Taavi only a couple of weeks later...
It was hard not to worry something bad would happen again with the birth of this newest blessing. We had suffered so much loss the past few years.
Thankfully Amarissa was born healthy and strong and her delivery went very well. The birth of this sweet rainbow has opened my eyes in a new way to the amazing blessings of new life. Her birth has also reminded me of the immense pain of the storm of death. It has helped me to realize that I have a lot of subconscious grief and unconquered fears which I still need to face.
Introducing our newest little blessing...
Amarissa Izabel
born 7/16/2003 at 10:45pm
9 lbs 15 oz - inches long
Thursday, April 25, 2013
Jehovah Jireh
I have shared so much of our journey over the last 4 years here. I have shared my highs and lows and the joys and sorrows as we cared for and then grieved our Alegria.
There is one area where I have been very cautious about sharing though, probably partly due to pride and also largely because I did not ever want to come across as asking or begging for anything. That area was the area of our finances. I am ready to share more now because our need has been completely met and also because I think it is important to recognize how challenging finances can be for families caring for special needs children.
When Alegria was born, we were debt free except for the 2 houses we owed on. We didn't even have a single credit card. We also were self-pay, in other words we had no insurance, but we were a part of an amazing health care sharing ministry. We had our doubts as to whether or not the ministry would be able to completely cover Alegria's medical needs. We were strongly encouraged by the hospital to apply for government assistance. We honestly struggled trying to make the right decision. In the end, we choose to continue trusting God to meet Ali's needs through Samaritan Ministries. And He did so more abundantly than we could have ever possibly imagined. Through Samaritan God provided the funds needed to cover the almost $200,000 of medical bills we faced during Ali's 27 months.
Fairly soon after Ali's birth though we applied for 3 credit cards. Money was tight. My husband had taken a significant pay cut and the work I did from home had completely dried up. Our annual income was cut by over 25%. My husband was also working close to 80 hour weeks. And now in addition to the needs of our large family of 9, we had just added a daughter with special needs which also meant more expenses. It wasn't the medical expenses that were challenging because as I said Samaritan Ministries covered those costs completely. It was all the non-medical costs that were challenging, from the special and expensive gluten-free, dairy-free diet that I went on to help her digestion to the technically non-medical needs of a hospital grade breast pump or her feeding tube supplies to the convenience/fast food purchases we made because neither Al or I had the time or energy to shop and prepare our typical home cooked meals to the simply unwise purchases we made simply because we were too overwhelmed and stressed... we started spiraling into credit card debt. For almost 4 years now we have struggled unsuccessfully to dig out from that burden of debt. It has been honestly very hard to accept this burden at times. Many times it felt as though there was no hope that we would ever be free from these debts. There have been many feelings of guilt and shame and frustration, but that never changed that we would have done anything for the opportunity to care for our Alegria Elizabeth. She was certainly worth it all!
I am so excited and thankful to be able to share that TODAY I paid the last of the credit card bills off! Jehovah Jireh our provider has provided abundantly for us. Our burden has been lifted. Praise be to our Awesome and Amazing God who does all things good in His perfect timing!
Now unto him that is able to do exceeding abundantly above all that we ask or think, according to the power that worketh in us, unto him be glory in the church by Christ Jesus throughout all ages, world without end. Amen. Eph 3:20-21
There is one area where I have been very cautious about sharing though, probably partly due to pride and also largely because I did not ever want to come across as asking or begging for anything. That area was the area of our finances. I am ready to share more now because our need has been completely met and also because I think it is important to recognize how challenging finances can be for families caring for special needs children.
When Alegria was born, we were debt free except for the 2 houses we owed on. We didn't even have a single credit card. We also were self-pay, in other words we had no insurance, but we were a part of an amazing health care sharing ministry. We had our doubts as to whether or not the ministry would be able to completely cover Alegria's medical needs. We were strongly encouraged by the hospital to apply for government assistance. We honestly struggled trying to make the right decision. In the end, we choose to continue trusting God to meet Ali's needs through Samaritan Ministries. And He did so more abundantly than we could have ever possibly imagined. Through Samaritan God provided the funds needed to cover the almost $200,000 of medical bills we faced during Ali's 27 months.
Fairly soon after Ali's birth though we applied for 3 credit cards. Money was tight. My husband had taken a significant pay cut and the work I did from home had completely dried up. Our annual income was cut by over 25%. My husband was also working close to 80 hour weeks. And now in addition to the needs of our large family of 9, we had just added a daughter with special needs which also meant more expenses. It wasn't the medical expenses that were challenging because as I said Samaritan Ministries covered those costs completely. It was all the non-medical costs that were challenging, from the special and expensive gluten-free, dairy-free diet that I went on to help her digestion to the technically non-medical needs of a hospital grade breast pump or her feeding tube supplies to the convenience/fast food purchases we made because neither Al or I had the time or energy to shop and prepare our typical home cooked meals to the simply unwise purchases we made simply because we were too overwhelmed and stressed... we started spiraling into credit card debt. For almost 4 years now we have struggled unsuccessfully to dig out from that burden of debt. It has been honestly very hard to accept this burden at times. Many times it felt as though there was no hope that we would ever be free from these debts. There have been many feelings of guilt and shame and frustration, but that never changed that we would have done anything for the opportunity to care for our Alegria Elizabeth. She was certainly worth it all!
I am so excited and thankful to be able to share that TODAY I paid the last of the credit card bills off! Jehovah Jireh our provider has provided abundantly for us. Our burden has been lifted. Praise be to our Awesome and Amazing God who does all things good in His perfect timing!
Now unto him that is able to do exceeding abundantly above all that we ask or think, according to the power that worketh in us, unto him be glory in the church by Christ Jesus throughout all ages, world without end. Amen. Eph 3:20-21
Monday, April 1, 2013
Unpublished
As I am trying to finish up Ali's blog, I came across quite a few unpublished posts. Many of them were half written or only contained a title or a few lines, but 3 of the complete yet unpublished posts really stood out to me.
I am not sure why I chose not to originally publish them, but they seem worth publishing now.
Most Days I Don't Think About It 1/28/10
I wanted 10 or maybe even 20... 6/13/11
I am not sure why I chose not to originally publish them, but they seem worth publishing now.
Most Days I Don't Think About It 1/28/10
I wanted 10 or maybe even 20... 6/13/11
Tuesday, March 26, 2013
The Hand of God - Part 7 - The End of the Beginning
We told the children the hard news first thing in the morning. The girls were very emotional and the boys were painfully stoic. They struggled with it individually each in there own way over the next weeks and months.
One of the hardest parts was coming home without Ali. It was extremely emotional. We turned on the local Christian radio station while we did the necessary clean up chores around the house. The song "Blessings" by Laura Story came on the station. I had never heard it before. I broke down as I listened to the words seemingly written for me that day...
'Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise.
As we prepared for the funeral so very many people reached out to us in our grief. I wish I could remember each and every detail, but unfortunately I can not.
There was a compassionate clerk at Burlington Coat Factory who helped me when I was totally overwhelmed looking for accessories for Alegria's funeral dress. I didn't even get her name.
My aunt and uncle made special arrangements with the monks at Abbey Caskets to have a specially made casket for Alegria. Ali needed a casket only slightly larger than infant casket. They custom made one just for her. And it was perfect!
A phone call to our hospital Financial Counselor Marcia ended up being about 2 minutes of business talk and the next twenty minutes was spent talking about Ali. Marcia told me how much Alegria and our family had touched her heart over the 27 months she had worked with us on medical bills. She told us how sorry she was for our family's loss and afterwards she took care of negotiating an another amazing discount on our large self-pay hospital bill.
Our church brought meals and ministered to us in innumerable ways.
The funeral home cut their cost significantly because it was a child's death. And then the funeral costs were completely taken care of by a donor who wished to remain anonymous.
The folks at Samaritan Ministries took up a collection and sent us a generous gift to help us cover our Samaritan share over the next few months.
We received an anonymous gift in the mail from a family we had never met who had heard about Alegria through an internet friend.
We received cards, emails, and prayers from literally all across the country. Friends came to the viewing and funeral that we hadn't seen for years.
As I said at the beginning of this series, looking back we have seen God's hand at work in all the details and that has brought us great comfort amidst this hard trial. God removed every single one of my fears.
I worried that she would die at home and I would be unable to help her. Instead God orchestrated the details so that she died in the PICU where she was under the care of great medical personnel.
I worried about being pressured to remove life support. Instead God worked out the details so that we never even received the EEG results. Looking back, it was probably a blessing that I wasn't allowed to even watch the EEG.
I worried that the doctors and nurses might withhold care from her because they wouldn't understand how valuable her life truly was. Instead God blessed us with an amazingly compassionate nurse Brittany and in the end Al and I watched as the entire team fought long and hard to save Alegria.
I worried that I might be blamed for her death by myself, my husband, or the medical personnel. Instead God brought 2 doctors I highly respected to tell me what a great job I had done in caring for Ali.
I worried how our marriage would survive this great loss and pain. But in God's grace we are closer now than ever before.
When the moments come when I struggle, I always try to focus on the blessing of the 27 months we got to spend with Ali here on this earth. Sadly many parents of children with trisomy 13 do not get weeks or even months with their children. We were blessed to get over 2 years with our amazing Alegria.
Praise God from whom all blessings flow.
One of the hardest parts was coming home without Ali. It was extremely emotional. We turned on the local Christian radio station while we did the necessary clean up chores around the house. The song "Blessings" by Laura Story came on the station. I had never heard it before. I broke down as I listened to the words seemingly written for me that day...
'Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise.
There was a compassionate clerk at Burlington Coat Factory who helped me when I was totally overwhelmed looking for accessories for Alegria's funeral dress. I didn't even get her name.
My aunt and uncle made special arrangements with the monks at Abbey Caskets to have a specially made casket for Alegria. Ali needed a casket only slightly larger than infant casket. They custom made one just for her. And it was perfect!
A phone call to our hospital Financial Counselor Marcia ended up being about 2 minutes of business talk and the next twenty minutes was spent talking about Ali. Marcia told me how much Alegria and our family had touched her heart over the 27 months she had worked with us on medical bills. She told us how sorry she was for our family's loss and afterwards she took care of negotiating an another amazing discount on our large self-pay hospital bill.
Our church brought meals and ministered to us in innumerable ways.
The funeral home cut their cost significantly because it was a child's death. And then the funeral costs were completely taken care of by a donor who wished to remain anonymous.
The folks at Samaritan Ministries took up a collection and sent us a generous gift to help us cover our Samaritan share over the next few months.
We received an anonymous gift in the mail from a family we had never met who had heard about Alegria through an internet friend.
We received cards, emails, and prayers from literally all across the country. Friends came to the viewing and funeral that we hadn't seen for years.
As I said at the beginning of this series, looking back we have seen God's hand at work in all the details and that has brought us great comfort amidst this hard trial. God removed every single one of my fears.
I worried that she would die at home and I would be unable to help her. Instead God orchestrated the details so that she died in the PICU where she was under the care of great medical personnel.
I worried about being pressured to remove life support. Instead God worked out the details so that we never even received the EEG results. Looking back, it was probably a blessing that I wasn't allowed to even watch the EEG.
I worried that the doctors and nurses might withhold care from her because they wouldn't understand how valuable her life truly was. Instead God blessed us with an amazingly compassionate nurse Brittany and in the end Al and I watched as the entire team fought long and hard to save Alegria.
I worried that I might be blamed for her death by myself, my husband, or the medical personnel. Instead God brought 2 doctors I highly respected to tell me what a great job I had done in caring for Ali.
I worried how our marriage would survive this great loss and pain. But in God's grace we are closer now than ever before.
When the moments come when I struggle, I always try to focus on the blessing of the 27 months we got to spend with Ali here on this earth. Sadly many parents of children with trisomy 13 do not get weeks or even months with their children. We were blessed to get over 2 years with our amazing Alegria.
Praise God from whom all blessings flow.
Monday, March 25, 2013
The Hand of God - Part 6 - Blessed Be the Name of the Lord.
As I sat holding Ali's now lifeless body, both the pulmonologist and the charge nurse each offered us their condolences telling us how terribly sorry they were. The charge nurse had tears in her eyes. She had fought so hard for Ali. Then the pulmonologist spoke the most consoling words that God knew I needed to hear and remember when the flood of doubts would come. He told us that it was obvious that Ali had lived as long as she did because of the wonderful care she had received at home. There was no condemnation, no second guessing, no if only you had... just merely the acknowledgement that I had done my best with the help of God and that our care and love for Alegria clearly showed. Our family doctor also said something very similar at her viewing. God knew I needed to be reminded it wasn't my fault and that I had done my best and it was good enough.
We never did receive those dreaded EEG results. What a blessing and answer to prayer! We never had to make any tough choices either. We fought for her until the end. And in the end, it was clear that there was nothing else left we could do.
After Ali had died, all I could honestly think about was getting home to my other children. We were an hour and a half away at my mom's house. And I wanted to be there when they got the news. I also knew my mother would have an extremely hard time hiding her emotions from the children. We decided we would not publicly announce it until the children knew first.
I did want to make sure that we made molds of Ali's hands and feet while we were still there in the PICU. It seemed like it took forever. We had to wait until the coroner confirmed there would be no need for an autopsy before we could do anything. Eventually we were able to make the impressions and hand and footprints too. These both meant so much to me later. Brittany stayed there until after we left way past the time her shift was over. I honestly have no real idea of what time we left. I think we made it back to my mom's house somewhere around 1pm. It was a long hard drive home, but I couldn't wait to get to my other children. We decided not to wake the children and instead to wait until morning to tell them.
To be continued...
We never did receive those dreaded EEG results. What a blessing and answer to prayer! We never had to make any tough choices either. We fought for her until the end. And in the end, it was clear that there was nothing else left we could do.
After Ali had died, all I could honestly think about was getting home to my other children. We were an hour and a half away at my mom's house. And I wanted to be there when they got the news. I also knew my mother would have an extremely hard time hiding her emotions from the children. We decided we would not publicly announce it until the children knew first.
I did want to make sure that we made molds of Ali's hands and feet while we were still there in the PICU. It seemed like it took forever. We had to wait until the coroner confirmed there would be no need for an autopsy before we could do anything. Eventually we were able to make the impressions and hand and footprints too. These both meant so much to me later. Brittany stayed there until after we left way past the time her shift was over. I honestly have no real idea of what time we left. I think we made it back to my mom's house somewhere around 1pm. It was a long hard drive home, but I couldn't wait to get to my other children. We decided not to wake the children and instead to wait until morning to tell them.
To be continued...
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