UPDATE: Leah is in recovery and did well during surgery. I'll update more when I know. That's all I've got right now.
I've had a lot weighing on my heart lately, but didn't want to share until after Christmas as to keep the bummage to a minimum.
We've had two losses (that I know of) in the EB Community this month. One was a three month old baby with Junctional EB and the other was a six and a half year old little boy with Junctional EB. Baby L got a g-tube, developed an infection, and passed away in early December. The little boy, W, had been fighting severe Junctional EB for six years, and finally, his body just couldn't take it anymore. He died in his sleep on Christmas Eve. I can't tell you the sadness I've felt for their families, especially their mothers, whom I don't even know. And of course, I've had a certain amount of sadness over thoughts of losing Jonah. Maybe it's crazy to think of his death when he's doing so well. I don't know. I know I should focus on the positive, and I do most of the time, but sometimes this stuff - this cruel reality that is Junctional EB - just slaps you in the face. To think that he could be doing well now, but that we could lose him at six years old. I can't handle it. And I think about it. A lot. I just can't help it. And I cry and obsess and cry some more. And then I'm okay. And then I'm not. We were told that non-Herlitz could have a normal life span (with MANY difficulties and complications), but I think I only KNOW of two Junctional EB adults. To me, that just doesn't add up. Anyway, I was doing really well with all of it and then we lost L and W, and I'm in a low now... really struggling with focusing on the now rather than worrying about the what if.
And I guess the real reason I'm posting tonight is to ask for prayers for Leah and Tripp.
Leah (already with a trach) will be getting a g-tube and her teeth taken out tomorrow.
Tripp (already with a trach and g-tube) will be getting his teeth (ten in all I think) taken out on Thursday.
I hate what Courtney and Meg are having to go through. It is not fair that two such young, beautiful mothers have to deal with this. They are having to have their babies' teeth REMOVED because their teeth are tearing their mouths to pieces. That is so incredibly messed up. And please pray for Leah as she gets her g-tube. Thankfully she will not have to be intubated since she already has the trach, but please pray that she will resist infection while in the hospital.
Thank you for keeping all of our sweeties in your prayers. And if you are making any end of the year donations, please consider DebRA or the Epidermolysis Bullosa Medical Research Foundation. We are desperate for a cure! Please help if you can.
Tuesday, December 29, 2009
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30 comments:
My heart aches for these families!! I can't begin to imagine how emotionally and physically exhausting it is to care for a child with EB. There is only thing that is a sure thing...God and his power. I will pray for you specifically for strength and courage!!!
Prayers will go up for Leah & Tripp. I had read both of their mom's blogs earlier. You are so awesome a mom & individual..I will also lift up the moms & other family members of L & W. Losing a child can never be easy. Prayers are also being sent up for Jonah & you & Matt. As my mom has told me many,many times & she is almost 89 years old, you never quit worrying about your children, no matter how old they are.
I ask God to take you in His arms & give you the strength to face all your coming days. As I have said before, I truly believe that God is going to heal Jonah. He has shown so many many miracles in his life these past 10 months.
May God guide you & comfort you.
Love Wanda
I knew about W, but I guess I missed the baby. It just kills me to even think about any of it.
I HATE HATE HATE this disease!!!
Praying for you! I can't image what you go through...
I hardly know what to say. This disease is terrible and wages its pain and ruin on the littlest among us. I will continue to pray for courage and strength for you and Matt as you walk daily through this trial.
With love,
WendyBee
Hi Patrice-
I'm so sorry for these losses - my heart breaks for the families, and I'll lift them up in prayer. I'm also praying for Tripp and Leah. This is such a horrible disease, and I take for granted all the little things that EB children have to endure. Like having a trach. Or having to have BABY teeth removed. I know this sounds strange, but thank you (again) for being so open and detailed with your posts. It reminds us all of the harshness of EB - and it reminds me to pray daily for God to provide the cure.
As always, I'm praying for sweet Jonah. And for you and Matt - may God give you peace and wisdom and strength every day. If there's anything else we can do, I'm happy to help (yes, even from TX!)
Love,
Laura
Oh, my heart aches for these families and Patrice, yours as well. You have a lot to think about when news like this comes up. I will pray that God give you the peace you need now and for Jonah to continue to do well. I will also pray for Leah and Trip. I have been already! Take care, Dear!
Oh, how heart wrenching. My prayers will include them. Thank you for telling us about these children.
Beckie in Brentwood, TN
Such sad news :( It's so hard not to obsess over things, and I can't blame you for feeling sad and fearful. Please take comfort knowing that we are praying like crazy for Jonah. I also do pray for Leah and Tripp. All of them are such sweet little babes, and it breaks my heart to think of all they've endured in their short lives.
~Amy
Praying for these little ones. I have a 6 month old and am relating to how you go from ok to freaked out to panicked to obsessed. This is my 3rd kid and I struggled for months with thinking and staying awake worrying about the what ifs. It was awful, robbed my joy, and crippled me. I did the beth moore study believing god a few yrs ago. It changed the way I do life because I choose to believe him, not just in him. I cling to those promises. Praying for your mind and heart to believe him...who he says he is, what he says he can do, and who you are in him. He is so believable: )
I'm not sure what I can say except that you will all be in my prayers.
Tears streaming, my prayers are with you Partice and all the other families. My heart breaks and aches for you. Praying.
Love, Mari
Praying with you, Patrice.
Cxx
I could never imagine the ups and downs you go through on a daily basis. Thank you for sharing and being real about how you feel. Even something as small as getting teeth can be life threatening. That is crazy. It makes my heart hurt for you and these families. I hope that in a few years we will get to celebrate that a cure has been found.
I ache for children in pain and suffering and I ache for there families. I am in awe of jonah and you guys as parents for your strength and probally most of all the faith that you show even when it's tough!! I grateful for the faith that i have and it is wonderful to know that we can see our loved ones again someday even if those families are hurting tremendously right now! God is good and he knows us best. Hé knows what we can handle and he chooses carefully who he sends these very choice spirts to. Mine were healthy, the normal kind, I guess i wasn't strong enough for other. Hold fast and never lose your faith even if you have to lean on others sometimes. We pray in our family for Jonah and for other children in need. Lot's of holiday hugs to you all and especially a big feather hug to Jonah!! Kristin
Hi Patrice: Thanks for the prayer request for Leah. I told Meg that you posted a prayer request on your blog and she was very touched. She has been through soooo much. I ache for her and especially Leah. I know that this surgery is the best thing for her. Will keep you posted on everything. Prayers for all the EB kids out there. What a terrible, awful disease. Take care and talk to you soon. Love you guys. Love Leah's Nana
my daughter was a preemie and when she was litte (especially when she was still in the NICU) and another preemie would loose there battle i would cry like a mom. i felt like i was loosing part of my baby. i knew how easily it could have been my precious blessing
My heart breaks for those families...I know it is hard to NOT have the thoughts you are having....It is easier said than done, but try to focus on the present, today's blessings, for it is a priceless gift that cant be overlooked....I will be keep all the families in my prayers. Keep us posted on Leah and Tripp. (((HUGS)))
Patrice I am sending extra prayers for these children and for you to have strength and peace. Please try to just enjoy each day with sweet Jonah as I am sure you do. None of us knows what our future will bring, but you should not have so many worries and difficulties. It often seems that life is not fair. You are an awesome mother and wife and many people are praying for the three of you. I hope that Jonah will have many , many happy years as he grows up and will continue to bring you much joy.
My heart aches. I'm at a loss for words.
My heart is just breaking. I, too, have lost a child and I am so sorry when any mother feels the pain that I endure. So many prayers go up for Leah, Tripp, and Jonah every day.
awww Patrice I cannot even imagine. I am so sorry for the EB communities loss and for your stress and your understandable fears.
I will pray for you!
Prayers going up for Leah and Tripp... My heart aches at the thought of what these little souls have to endure. Their mommies and daddies are the best parents in the entire world.
Blessings to you all and Happy New Year.
Even though I don't comment often, I read your every post and think about you and your family often. You are in my prayers. I wish I had something amazing to say that would take all your fears away, but I am left with an achy heart for your pain and I don't think there is anything that can be said to take any of that pain away, except that God has granted a cure. And I try to remember that He has, one day Jonah will be perfected and renewed before God, hopefully (by way of a cure) one day very soon on Earth but if not, we trust it will be so one day hopefully very very far off in heaven when Jonah is with his brother long after you and Matt have already met him there. Praying for a cure.
Oh this is so sad and yes it is ALOT for you to deal with. I am praying for you and the families and children that you mentioned.
Patrice, I have read your blog for many months now and have never commented. Even though several of your posts have truly hit home, this one is the same way I am feeling right now. You see, I have 2 children with RDEB, Rachel is 11 and Matthew is 9 yrs. old. It devastates me to no end to see many of these children succumb to this awful disorder. I have been a basket case over the last week and having terrible panic attacks. Most days, like you, I can handle my emotions but there are days that the "what if's" just consume you and you feel like you're drowning. I'm not sure how to handle those days or even how to get through them at times. But, I just wanted you to know that you're not alone and somehow we must fight this fight and hopefully with a lot of prayer and maybe even a miracle or 2 we will come out on the winning side. Let me know if you ever need to talk, maybe we can help each other out.
I think W was from my hometown. For some reason, when my mom and I were reading the paper on the 26th, we happened to notice his obituary. My mom said, "Oh, that poor family lost their little boy on Christmas Eve!" As we read his obit, she realized that she'd read your blog. We stopped and prayed for W's family and your family.
I'll continue to pray for you.
my heart hurts for all of you. So many babies and families going through so much right now.
((hugs))
Oh what a heavy heart I have right now but it is good to be burdened with prayer. However, praying for you and for the EB kids/families you introduce us to is not a burden. Instead, it is a priveledge. One thing I want to say is that we are (none of us) promised tomorrow. I have had to think about loosing my son three times. Once at birth and twice to fire (one in his day care room and one right outside his bedroom window). These are NOTHING compared to EB. I understand that and would NEVER say otherwise. I do want to say that it is NORMAL for you to be considering Jonah's death as you hear these stories even as he does so well. It does make you appreciate what you have and it does help add energy to your prayers.
You are a precious family and have become more special to me as time goes along. You share from your heart and I try to respond from my heart. Please know I will keep praying and that I know God is in the center of this storm. God is always present and always ready.
God continue to bless you and your family, Patrice.
Jennifer in Southeast, NC
I just can't imagine having to carry that kind of burden. Extra prayers for you and these families today!
Just try to think positive as often and as much as you can - it's the only way you'll ever get through each day. Every day with your child no matter the circumstances is a true blessing. Jonah is absolutely gorgeous. My heart melts every time I look at a photo you've posted of him - he is just precious!!!! I know I'm not in your shoes, but that's the best advice I can give. I love your son and God knows YOU do. It's the best you can ever do... to love and to appreciate every day you have with your baby.
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