Saturday, January 9, 2010

Hanging in there

Hi everyone.  Sorry I haven't posted anything for awhile.  Apparently I've been making some people worry by being invisible on here. 

We're doing OK.  We are just trying to stay busy - getting the house organized and clean. 

I think Leah's ashes will be available for us to go and get today.  My pendant and her urn are not here yet but I don't care - it'll be so nice to have part of her here again, close to me. 

I know a lot of people are still worried about us --- and I don't know how to make everyone understand how we feel.  I know that to the outsider, the situation is: they lost their 10 month old child.  But to us it's: our 10 month old daughter who was in enormous pain, is finally pain free.  She will never feel the pain of her skin blistering at the slightest touch or pressure.  Her teeth will never cause her pain again.  She can breathe freely without an uncomfortable tube in her throat. 

And yes, part of our pain is that: our daughter is gone - but the fact that she is happy and pain free trumps all of that. 

Yes, I want to hold her again ........... but I'd be worried about hurting her.
Yes, I want to see her again ............ but my heart would be breaking to see her in pain.
And I know someday I will hold her and see her again -- and she will be completely happy, and she'll have so many things to show me and tell me.  And I can wait for that day - and rest assured that she is in good hands until then. 

So yes, it is hard --- hard for me, hard for Jeff --- but Leah is enjoying unimaginable rewards in Heaven right now -- and that's all that matters.  As I wrote before, yes my heart is broken, yes I am devastated - but I - Don't - Care. Every single thing I've done since I found out I was pregnant with Leah has been for Leah.  So how can I feel horrible when she is the happiest she's ever been?  She wouldn't want me to stay in bed, crying for her.  I didn't do that when this 'special' baby was given to me by God.  And believe me, I didn't have the foggiest idea how to care for her - and I was terrified. 

I stayed right by her side, learning all I could from her, finding out how to take the very best care of her - and now she'll stay right by my side - helping me to continue on and live to honor her and God. 

And I know if your heart isn't filled with faith then it seems like all this is just 'how I get through the day'.  But it is the truth.  I know it is.

Pastor Tom stopped by the house yesterday to talk and pray with us and he talked about how many peoples lives Leah touched in just 10 short months.  And it's true - some people live for decades and don't make any impact.  Leah couldn't walk or talk and still changed the lives of countless people.  She made people grateful for the blessings of good health for themselves and healthy children, and thankful for the small things in life that most take for granted.  I know that a lot of people read about Leah's passing and went and hugged their own children - with a realization that they need to appreciate and love them more - and that makes me smile.

Leah always had the best disposition.  When she cried, she'd calm herself down in seconds.  When she fussed, it wasn't for long.  When she was in a lot of pain, she would just sit quietly - like she knew that this pain was just temporary - and that soon she'd be relieved of it all and become the angel she was born to be. 

All of these things make her passing ...... well, not OK ........ but bearable, I guess is a good word.  As a mother I miss her terribly, but as her mother I am very proud of her life, struggle, and the impact she made in her very short time here.  I'm honored to have been chosen as her mother and am proud to have her as my guardian angel now. 


Anonymous said...

thinking of you and praying for you daily.

Linda said...

Hi Love:
Knowing that she is finally pain free and without this terrible EB does make it Bearable. I love the way you love Leah, and yes, she is with you all the time.
We all need a guardian angel, and you have the best.
Love you so much and will keep praying for you and Jeff to continue to feel God's Grace and his Love. All my Love Mom

Anonymous said...

beautifully written. Thanks for your honesty. Leah was and is a precious little girl. Our children prayed for her and now we rejoice she is no longer in pain. You are incredible parents and amazingly selfless.

Tracie said...

I "know" how you feel. When the dr told us that our preemie son would never talk, walk, run, or even know he was here...well, let's just say we knew that he deserved better than that. The pain is still so strong but we know that he is in Heaven...talking, walking, running, and he knows he is loved.
Hang in there. Still sending prayers.

jenniferO said...

You are so strong and wise. I'm praying for you and your future, whatever God may have in store for you.

Anonymous said...

Your thoughts were so beautifully expressed and reflect such a loving and wise perspective. Praying that God will continue to strengthen and sustain you and your family.

A friend in NC

Anonymous said...

It's good to hear that you are doing okay, and have the reassurance of seeing and holding Leah again. I continue to pray for you as you figure out life now.

I am one of those people who Leah (and you) had an impact on. Reading her story has given me such an appreciation for the gift of health. Just because we decide to get pregnant and have a child does not mean we are promised a healthy baby. Nothing is guaranteed and we shouldn't take it for granted when we do have a healthy baby. It truly is a gift from God.

You also taught me how to be a good mom. My 2 kids only require the daily, mundane things and at times that feels overwhelming, but when I look at all you did for Leah it was humbling to me. Not only did you do all of her medical stuff, you made such an effort to do extra special stuff for her. Stuff that I think I wouldn't have time to do, or energy. Even though you had so much of an extra burden in caring for her you truly made her 10 short months the most meaningful, special time for her.

I know God has special blessings for you. Leah was obviously the biggest blessing, but I know her story, and yours is not over yet and I hope you continue to let us be involved in your life so we can see the cool things He is going to do through you!


Shuggamom said...

Meg, Thank you for sharing your personal thoughts and being so honest !!!!
Leah will always be a BEAUTIFUL DOLL to everyone!!!!
Yes she is pain-free and happy beyond what we can comprehend !!!
I pray that GOD will continue to bless you and your husband with strength and courage and peace,moment by moment of everyday!!
Will keep checking in on you and praying!!


East Texas

Jill said...

Thinking about you. I came across your blog and wanted to say hi. I am so sorry for your loss. xo

Tiffany said...

Such a beautiful way to look at things. Thank-you for sharing your beautiful Leah with us.

Autumn said...

Love the way you see this as setting her pain free. Shows that you wanted what was best for her and aren't selfish. I know it is tough but glad you have found it bearable. She was a beautiful little girl and now has her sweet angel wings. Hugs

Carrie said...

I think that your feelings after the loss of your little girl is very similar to another family's experience.

If you have the time, here is the website

jaymie g said...

I think that you have expressed yourself beautifully. Leah lived a loved life whilst she was here. You are amazing, wonderful parents who gave her so much.

Thanks for sharing.

LoveLladro said...

Beautifully written... and beautifully honest.

My mom passed away 5 years ago after a long battle with breast cancer. My dad often says that the grieving process for terminally ill patients is drastically different than sudden unexpected deaths. You do your grieving while the person is still alive... so when they actually pass and that pain and struggle is gone... those left behind are already further along in the process than most people think.

I just felt the need to type that out. Praying for you and your family.

Courtney Roth said...

YOU ARE AMAZING. That's all I can say. I love and admire you so much for your strength. I understand so much what you are saying. I have NO clue what you must be feeling, but I totally get what mean by what you said. GOD CHOSE our babies to suffer for a reason. What a wonderful, inspiring, courageous person you are!!! He sure knew how to pick the best mommy for that little girl. I sure hope she flies over Tripp and I every now and then too :) I love you girl- you are an inspiration. And so is Leah.
Love, Courtney

Courtney Roth said...

YOU ARE AMAZING. That's all I can say. I love and admire you so much for your strength. I understand so much what you are saying. I have NO clue what you must be feeling, but I totally get what mean by what you said. GOD CHOSE our babies to suffer for a reason. What a wonderful, inspiring, courageous person you are!!! He sure knew how to pick the best mommy for that little girl. I sure hope she flies over Tripp and I every now and then too :) I love you girl- you are an inspiration. And so is Leah.
Love, Courtney

Coco said...

I have never met you and only followed Leah's story for a short time but yes, she has left an impact on my life as well. I am so glad that you have the faith that you do and that you are able to move forward with the peace of knowing she is pain free and waiting for you in Jesus' arms. It will never be easy, you will never forget her but I think that you are letting her peace be your peace and for that I am happy(?) for you. God Bless you all...

thorney said...

I am so amazed with your strength and the enormous love you have for your precious daughter Leah. She healthy and whole in the arms of Jesus waiting for Mom and Dad.

Keeping you in our prayers.

Blessings, Mari

Julie said...

Your words speak volumes about who Leah was and what an impact she had on people. Please know that you are in my prayers, that God will continue to comfort you always.

Debbie,mother of two said...

I understand what you are saying. To know that your child is the God and pain free and doing things that she could not do on this earth. Keeping you and your family in my prayers. Leah had wonderful parents that I thank God that she had this.

Anonymous said...

It's beautiful and humbling how you put your daughter before your grief.

Anonymous said...

Meghann, again I am Blessed by your testimony and am so proud of you and the Faith in God that you have displayed through all of this. Leah drew all of us closer to God and your words continue us on that journey. God Bless you!! Love you, Aunt Penny

Anonymous said...

My husband and I also lost a very sick baby. Thank you for your words. I understand! You are an encouragement and your little one will continue to touch lives! Praying for you!

Anonymous said...

Thanks so much for updating your blog... We all can't stop thinking of you. Just the fact that you take the time to keep us updated, shows you're truly a remarkable woman.
Once again I admire you...
I know you will cherish your necklace. Wear it with great comfort. Love ya!!!

asplashofsunshine said...

This is my first time to your blog, and I am in awe. What an amazing baby girl you have! I am glad you can find peace in her passing, and perhaps I am wrong, but it almost seems as if you are able to smile too. Peace to you, to your husband, and to your adorable baby girl!

Anonymous said...

Perfectly stated. I understand as one who has been there. Peace to your family. Amarillo Nana

Ani said...

Thinking of you and praying for Leah.

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