for our "normal" routine to stop.
no more quiet nights,
no more going to bed without a treatment first,
no more sneaking into bed and sleeping a little longer in bed all together,
no more quiet nights,
no more going to bed without a treatment first,
no more sneaking into bed and sleeping a little longer in bed all together,
no more waking up to a mask-less faced sweetheart
Instead cough assist will be before bedtime and one of the first things we do in the morning.
The bi-pap mask will become night time attire and the hum of the bi-pap will become the new background noise of the night. It kills me to have to start doing this, but I know all to well how it will help her. It is time to start. Little by little. And so we will.Maggie's a trooper, we pray that Jonas will be with her and teach her how to be brave, courageous, and learn to be resilient.
Wish us luck!
16 comments:
Ah honey...I am so sorry. So so sorry. I do know that Jonas will help her--she couldn't ask for a better angel helper.
We're behind you! We'll cheer for you with every post, and every minute in between. You wont need luck because of all the Angels that attend, but we'll wish you good luck nonetheless! I wish I had the words to say how much we care about what Maggie and your family is going through, and on a similar note, how much your experiences have touched and changes us for the better!
Your words brought back so many memories with the suction machine (13+ years ago!). We acquired one shortly before Jeffrey actually needed it, but I still remember my emotional state when I thought it was time to fire it up. The machine sounded like it was full of marbles so we had to wait on a replacement, but knowing we were moving down the 'list' so quickly produced sufficient tears. It didn't take long to see how thankful our little guy was for the relief it produced, though.
Your little Maggie is as beautiful as her big angel brother, who is surely letting her know she'll feel so much better!
Sending big hugs -
'Lucy'
Oh Maggie, you beautiful thing. I'm so sorry for her but am glad they have these machines to help her. Lucky for her she has the best parents on the planet and Jonas to love her through the tough moments.
Off topic: Whit looks so much like Jonas in the sleeping picture... Do you see it?
Linds,
I'm sure you hate starting all of this again. I'm sure it breaks your heart to see Maggie try to endure it. I will pray too that Jonas will be with her and help her every step of the way. I have no doubt that he is so close, especially to his dear little sister.
I think about Jonas every day and love to look at the pictures I have of him. He reminds me of what's most important in life and I will ever be grateful for him.
Love you all!
Ash
This might sound really stupid, but I wish that SMA were an actual person, so we could hire a hit man and take "him" out...!
If only it were that easy to get rid of this bully (that's a NICE way to put it) who goes after children and their parents.
Maggie is a darling and I miss Jonas so much. It seems so unfair that you are having to face the same decisions and the same trials. I hate it.
I think you are brave and wonderful and I am so thankful for you - and I hate SMA!!!!!!!! I pray that they will find a cure!!!!!!!!!!!
Cathy in Missouri
I agree with the comment above! Just remember Colemans, that so many families are like yours in our SMA community. And I'm sure every one is pulling for Maggie and you all.
WE love you and know Jonas is the bestest big brother EVER and he is totally there for her and you!!! It sucks so bad how something like bipap-in our case the ventilator-helps so much. Its something you learn to love because it keeps them with us and healthy and happy longer. Still its so hard to have to come to that "reality". Bla. Stupid SMA, makes us stronger but some days is soooo hard. We love you guys and and cheering you on!! Maggie is a superstar and we are all so impressed with her fighting spirit already! Smooches!
Is it "normal" for her to be on it already? Was Jonas on it at this point or earlier?
I know you will continue to be amazingly brave as you always have been!
Loves!
I am so SORRY!!! That breaks my heart.
I'm so sorry Linds! I don't know how you do it. You are a true inspiration to me! I had cords hooked up to my kiddos for a week with oxygen and suctioning treatments and masks for breathing and it killed me. I look up to you guys more than you know and know that little Jonas will help your sweet Maggie along the way. She is too precious for words.
just love her beautiful face!
No words...just prayers for Maggie. She is so beautiful!
Sending enormous hugs and thoughts to you both and your brave little girl!
Lots of love and prayers for you all!!
Your family continues to amaze me. As we fight our own SMA battle here, I think every mom knows you can only function by taking things one day at a time. Thank you for sharing so much of your life with us. I wish I lived close so I could meet you and your beautiful little girl!!! Dr. Swoboda is awesome and I am so glad you have her support. Much love to your family!
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