Monday, April 6, 2009

Choosing Among Children

This weekend I held Justin as he struggled to breathe. He smiled whenever I kissed his amazingly smooth cheeks (he always smiles--he's one of the smiliest little guys I've ever seen). His blood pressure was dropping, and I knew he had to get to the hospital fast. Grace is a neurological mess--I'll post a video later of her tossing her head and slapping her neck. Grace is on a cocktail of epilepsy meds that make Justin's look like cough drops. Annie continues to have difficulty swallowing. Endoscopy showed no abnormalities. She's dropped four kgs in six weeks.  Annie is Hep B positive. So is Paula. So is Jasper.

They're all in Hyderabad today, but I'm not.  I'm in another state, at my eldest daughter Simona's boarding school, coming from her swim meet. She came in second overall in the junior girls division. She looks wonderful and is very happy. Going to her variety show tonight, and her parent-teacher conference tomorrow.  Then taking all of my kids to the amusement park for Shayna's birthday, and then taking Simona home for spring break.  

Annie's getting a g-tube placed tomorrow. Thank the Lord. But the doctor called me and said, "Get here tomorrow. I can't have an intelligent conversation with these ladies about what needs to be done." I begged him to accept my authorization over the phone and he finally agreed (Wanna help? We need $200.) Bless you, Maudie.
The doctors dismissed my suspicion of thalassemia for Justin and want to UP his gardenal. 
Grace has an arachnoid cyst on the brain, but "there would be no real improvement with surgery" (contrary to my research). 
Jasper's condition was not taken seriously. 
Nathan had an EEG ordered, so we'll see there. I've decided to have them all seen at a newer hospital I've used a few times. 

My heart's in two places--is that wrong? Does the choice (family over "work" or "ministry") seem clear-cut?  It would be if it were a congregation in which no one would die if a special speaker were called for a Sunday.  It might be if I were an employee of a children's home.  

But it wouldn't be so easy for an adoptive mom to make that decision, would it? 
If I didn't feel so much like an adoptive mom, it wouldn't be so hard. At this point at least, I'm the only mother that ANY (Sim, Shayna, & Amira included) of these children have.

14 comments:

Claire said...

People with learning disabilities are so frequently not taken seriously. Even in the UK there are currently at least 6 cases being investigated where people with LD died due to inadequate medical care. You are making a difference to these attitudes! It reminds be of the young man who acted in "Notes on a Scandal" he has Down Syndrome and performed with Chicken Shed Theatre Company to Judy Dench. She was so impressed that she head hunted him to work with her in the film!

I read an article that many public and private hospitals in India reuse needles routinely, and it made me concerned for your children. Auto-disable needles are the only way to be sure this won't happen. Good Luck with the surgeries.

Love Claire

Rachel said...

holy moly...did they do any tests do on justin to make that decision??? i would be ecstatic if he didnt have thalassemia, but i think it definately needs to be ruled out! is it that he thinks he doesnt deserve blood transfustions or something?? oh my...
with my kiddos who have various special needs, it is sometimes hard because one or the other has something going on and i have to leave the "flock" for a bit to help the other one...which is Jesus' example so it makes me feel a little better about that. you are doing a great job at a very hard job that many others have allowed to become so big in not treating these children. just do the best that you can. i know it must be so hard. it was hard on my kiddos when josie was in the children's hospital for so long. i missed thanksgiving christmas and new year that year because i was at the hospital with her. it did cause some behavior with the other kids, but now every one is back to normal.
i encourage you to try to find a second opinion for justin or beg the doctor to at least test him for thal. to rule it out before increasing his seizure medicines. will be interceding for this. hugs sarah.

Theresa said...

Sarah, I hear the dispair in your voice. It troubles me and I am filled with compassion for you. So is the Father.

Remember that you have a Head of the Family who has great plans to prosper you and all your children. When you are not beside them, He always is. He is the Great Comforter. Rest in His arms. Feel them comfortering you and know that they are surrounding not only the children, but the staff and the doctors also. I speak undeniable peace over you, in Jesus' name. Emotions be still, in Jesus' name. I release the joy of the Lord in this situation right now! Be strengthened by the love that is being poured into you right now, in Jesus' name. Walk in peace, love and joy!

Rachel said...

sarah. if justin is short of breath and having blood pressure problems he most likely needs a blood transfusion. i cant get it off my mind! when hemoglobin is low people can get very short of breath because the hgb is what carries the oxygen around to cells. low bp could be dehydration, or shock. beg that doctor, i wish i could be there to help you! praying for you all day.. rachel

Anonymous said...

Hang in there girl. Praying for peace for you and for healing for your kids. God knows there in only one of you....and He's their Daddy in Hyderabad.

Love, Maudie

P.S. I've got the G-tube covered.

Rachel said...

oh just saw that your having them seen at a newer hospital. AWESOME!

lorismusings said...

My heart hurts for you as you feel torn in so many directions with the kids. I can only imagine!

We continue praying.

Recovering Noah said...

My heart hurts for you, too. I really have no words of advice - but I can pray for you and the kids and let you know that so many people are thinking of Justin and Grace and Jasper - all of the children. They are all in our hearts.

For me, one of the hardest things about being a mom is the "Mommy Guilt" that goes along with it. Am I doing enough? Did I do enough? Did I pay enough attention? My grandad also tells me to "Let go and LET GOD". He's right - even though it is hard to do sometimes.

I hope that you are able to enjoy the next few days away from the homes and maybe regroup and refresh. I have no doubt that you'll probably dive nose deep into all the medical care as soon as you return - and it's really important to just take a breather sometimes and give control to God. You are doing nothing wrong by doing that.

We're praying.

Leslie

Anonymous said...

Hi, Sarah!

Praying for you and all your children, esp. the ones you've mentioned. Praying for wisdom and discernment and that God will go before you and make the way clear, and provide for you and His precious children in His all-sufficient and omnipresent way!

Lisa H

Tia said...

Sometimes as an adoptive mother, or any kind of mother, it is necessary to do the happy things and let others do the hard stuff. It's difficult; it goes against everything we learn and against those Mummy instincts, but building happy memories is as important as being there in the tough times. Especially when there are some children who are constantly sick, it is important to do things with those who are well. Call it balance, call it respite, call it a sanity break or building the family bonds. Every thing has its time, and the partying can be just as important as the nursing.

It doesn't make it any easier to walk away from the struggling ones though; even when you know you will be back soon.

Your whole family is important and it sounds as though you are finding that balance.

Take care,
Tia

Nikolyn said...

Sarah, I know you are feeling low but hang in there. You are not alone. Jesus said, "Come to me, all you who are weary and burdened and I will give you rest...". He loves these kids even more than you do so rest and receive the joy and blessing when you can. Celebrate your girls and lift your cares to the Father. I care that you are hurting and I reach out to you across the globe in sisterly love and support. Hang in there!

Julie said...

Please know we are all here lifting you and your kids in prayer. I have been there having to prioritize the needs of my kids even when all of them needed some really important things. Please continue to share your burdens and we will lift them up for you--we will be your stretcher bearers during these times.
Love, Julie

Julie Terry said...

God made this decision for you. If Sim, Shayna, and Amira were not meant to be your first priority, you wouldn't have them. I feel strongly about this.

I am not dismissing your feelings. I ache for you. But I am 110% sure that you are where you are supposed to be. This is such a delicate age for kids--trust me--you need to be there, enthusiastically supporting your growing-up girl.

David and Sarah said...

Praying for you.

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